tag:blogger.com,1999:blog-9837965201315756762024-03-04T20:54:19.427-08:00Pre Liver Transplant JittersI am a 31yr old Hispanic Female w/Cryptogenic Cirrhosis going through my Pre-transplant phase. This is for ALL out there who are suffering w/any kind of liver disease and wish to tell their story! You can contact me via Facebook or Twitter on the bottom toolbar. Also, be sure to click on the orange box that says "+Share" on the toolbar to share this page with your friends!Unknownnoreply@blogger.comBlogger37125tag:blogger.com,1999:blog-983796520131575676.post-70799706931943267862013-04-10T09:32:00.001-07:002013-04-10T09:32:02.172-07:00What's been going on...Well, it's been a long time since I've posted an entry here and that's because there's really nothing I have to say. No good news, in fact, quite the opposite. I've been taken off the list in NY cause I've missed my doctor's appointments. <br />
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This was no accident. At times, I feel like I want to get this over with, but as of late, I'm just really stressed out and have made some major changes in my life that take some getting used to. I'm going to go back to the transplant clinic and get re-listed but 'when' is the question. I feel fine & I'm in no hurry to get a major organ replaced and, very possibly, bring about a whole new set of health issues that are worse than what I'm dealing with now.<br />
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While I've made a fantastic accomplishment, and by that, I'm referring to the fact that I've been off methadone since January 31, 2013, making it almost 3 months now. Jeez...feels a helluva lot longer than that. I've made the transition to get on Suboxone, which for the first week, I thought I was going to die, but I'm now well adjusted on my dose. I get it from my PCP, so no BS clinic to go to, and I've started seeing a therapist, which I am hopeful of the outcome of that. However, I've been on a pretty destructive path as of late and I'm <i>really</i> trying to control it and I refer to drinking. At first, it was just a glass or 2 of wine on the weekends but it's now turned into a lot more, and that's just about the worse thing that I can be doing now.<br />
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So, instead of cutting me off from everything (by everything, I mean cigarettes, xanax, and the drinking) all at once, which would be extraordinarily stressful on me and could quiet possibly lead me to a very horrible relapse) I'm getting rid of one thing at a time. I'm going to cut down on everything, then one by one, cut it out altogether. I think that's the smart way to do it. I cannot go back to the Dr if there's alcohol in my system and I know that it takes FOREVER for my system to get rid of stuff, so I'd give it a week. <br />
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On a better note, I'm going to an awesome concert, family reunion and Puerto Rico this July. Since my son will be with me this summer, I'm very hopeful that by the time summer is over, I'll be rid of all these bad new habits. My son gives me the strength that I need, strength that no one else can give me, cause he's the one who needs me the most. Not that I'm unappreciative of well-wishers, but when it comes down to it, my death would mean nothing more than "Wow! It's a shame she died so young". But for my son, it would devastate his life forever and that's something that I just won't allow to happen.<br />
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Well, that's about all I've got to say as of right now. Till next time...Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-983796520131575676.post-67426279471757338432012-08-08T06:29:00.001-07:002012-08-08T06:29:47.996-07:00Cut my losses?I'm <i>extremely </i>disappointed at how things have turned out in the last few days. I'll fill you in on that now. I've done everything that I was asked to do, in order to get listed here in FL. I've done the colonoscopy, 2 mammograms, seen a Pulmonologist, got dental clearance, and saw a psychiatrist, yet again, to get psychiatric clearance. All of that has been done.<br />
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Finally, I go to get listed, and I'm now listed with my biological MELD of 8. What the surgeon is concerned about now, is the steady decline in my MELD score. The MELD usually gets higher, not lower, over time. He now wants to know if my PAH is due to the liver disease, if they're linked in any way, or if I have PPAH, and not APAH (Primary Pulmonary Arterial Hypertension, or Associated PAH). He's now telling me that since my MELD is getting lower, that there's no urgency to get a liver transplant. I do understand his viewpoint, however, it's pretty irrelevant, since it's already been determined that I do need a liver transplant. The whole 'when' point, is one that we're <i>seriously </i>butting heads on.<br />
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I may not be dying right now, and my liver is obviously still functioning in a limited capacity, but the heart of the matter is that I came to FL for the sole purpose of getting my transplant faster, as opposed to waiting in NY. I'm still listed with my upgraded MELD score of 22 in NY, and I'm actually due for another heart catheterization if I wish to stay listed in NY, and have my MELD upgraded, once again, to 25. I've asked Mt. Sinai if I was to get the heart catheterization here, if that would be sufficient to have my MELD upgraded again. <br />
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So, the surgeon here in FL, wants me to see a PAH specialist, which I've got no problem doing, but he's not going to even attempt to have my MELD upgraded here in FL. That's going to take, yet again, more time. I now have an HMO, so I must see my Primary Care Physician to get a referral to see the PAH specialist, and then I can make an appointment with the PAH specialist, where I'll be evaluated as to whether my PAH is Associated (which it most likely is) or if it's Primary (if it were Primary PAH, than I'd need to be on a lot more stronger medication. Mt. Sinai has accepted the fact that I have APAH, so that's good enough for me).<br />
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If it's PPAH, than a liver transplant can actually cause more harm than good. It can actually cause death during the transplant. I really wish that I know someone who's had PAH & a liver transplant, just to know what it is that they had to go through to get listed. Anyways, the way that I see it, is the PAH Specialist will, most likely, want another heart catheterization. If that's the case, than will I get listed with my upgraded MELD in FL? Probably not. I'd probably have to wait until the heart catheterization is performed and the results are in. The question that I've asked Mt. Sinai, is that if I get a heart catheterization here in FL, and if they fax the results to them, will that be sufficient to have my MELD upgraded yet again, in NY to 25? If so, than it's probably worth it to get the heart catheterization done here in FL, because not only will I finally get listed with an upgraded MELD, but I'll be listed in NY with an upgraded MELD, as well. The problem is: Can I tolerate staying here that long, alone? I'm not so sure anymore that I can. I told the surgeon that I was planning on being home in time for Thanksgiving and he said that's an unrealistic expectation.<br />
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What I see happening here is that the rules seem to be changing every time that I go to the transplant clinic. I was asked to see a Pulmonologist, and I did, and he said that I'm still medically cleared for surgery. Now, he wants me to see a PAH Specialist. I've got no problem doing that, but I'd rather get listed with my upgraded MELD score now, rather than later. I mean, what is the PAH Specialist going to tell this surgeon that he doesn't already know without performing numerous tests on me? Then what? I'll have to wait until all these tests get performed and the results come in? It's just something that I can see going on & on.<br />
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Regardless, I'm not leaving FL as of right now, due to the simple fact that I've already paid to have dental work done, and it's getting done as we speak. Rick Hirsch has been on vacation and will not be coming back until Monday, the 13th. I'd really like to have a little talk with him about all of this. I'll know a lot more in 2 weeks, as to what's going on and a better time frame of how long I would have to be here in FL until I get listed with my upgraded MELD, and once upgraded, how long will it take until I get called in for my transplant. I'm pretty much 50/50 as of right this moment. I'll know more in 2 weeks, and I'll write another post then. Till next time...Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-983796520131575676.post-23639554456500684022012-07-30T14:05:00.001-07:002012-07-30T14:05:25.676-07:00Seriously freaking out...Here's a little update from today's earlier entry. Broward General Medical Center just called me back, and I'm going in on August 8th, where I'll finally be listed. However, I'll be listed with my biological MELD score of 9, then, most likely by that Friday, I'll be listed with my upgraded MELD of 22.<br />
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This is all very nerve-wracking. Things are happening so fast. This means, that in just 2-3 short, little weeks from now, I could be undergoing the most important surgery of my entire life; one that any human being should never have to undergo, and one that very few people have undergone. <br />
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There's a vaccine that I must get, I think it's the pneumonia vaccine, but the coordinator told me that it's actually a vaccine that's given only to people who are going to be on immuno-suppressant medication, since my immune system will be suppressed, so that my body doesn't reject the organ. I also have to tell my dentist (and I'm certain that he's NOT going to be happy about this...possibly might tell me to get the hell out of his office) to write a letter, to the Transplant Clinic, stating that I have no loose teeth or open sores in my mouth. I asked why this is important, and I was told this: "During surgery, if there's any loose teeth in your mouth, they could get knocked out and get lodged in your lungs. The mouth is generally a dirty place to begin with, but if there's any open sores, than that infection will make it's way into your blood stream."<br />
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This is all so crazy! The emotional part of me is screaming 'Go home!! Get away while you can! WTF are you thinking?' and the more logical part of me is saying 'Good. Let's just get this over with already, before I change my mind'. <br />
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My whole life I've ran from problems. I've seldom looked a problem in the eye, so to speak, and just dealt with the consequences. It's almost like it's in my nature to run & hide. I'm not running & hiding, and this is totally going against everything that I've ever done in my life. If there was ever a time to 'run & hide', it would be now. This is serious business. I've had nightmares about this. My life's been seriously interrupted by my health problems, and I've grown accustomed to it. I try to think positively and tell myself that this is the beginning of a new life for me, a chance to start over. I feel too old to 'start over'. I've started over too many times already, put in half-hearted attempts at change, and for me especially, change is scary. Fact is, I don't know what life's going to be like once I get my transplant, and that's uncharted waters for me. <br />
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Regardless of what's going to happen, I've just got to suck it up, soldier on, and get this over with. I'll write another entry on next Monday. Till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-30644091391469138222012-07-30T08:16:00.001-07:002012-07-30T08:16:53.559-07:00All systems a go...I've seen the psychiatrist, here in FL on Saturday. He wrote a book, pretty much, but as I have said, he asked me "Why are you here? You've already got psychiatric clearance from NY." I agreed with his assessment, as it's true, but the surgeon insisted that I see a psychiatrist in FL, and even the psychiatrist, once I told him of my awful experience with the surgeon, agreed with me that this particular surgeon has absolutely no bedside manners, as a lot of surgeons do.<br />
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His conclusion is that I'm very well informed about my health condition, and I'm fully prepared to undergo surgery. So, psychiatric clearance has been, once again, granted. This was the last thing that was required of me to do prior to being listed. So, as of right now, all systems are a go!<br />
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As I've said in my previous entry, I will first be listed, here in FL, with my biological MELD score of 9 (which is nothing), and my case will be brought before the UNOS committee, and, legally, they've got 21 days to respond, however, the Transplant Coordinator, Rick Hirsch, said to me that he's never seen it take longer than 4 business days. Furthermore, he said that in my case, it'll be more simple for them due to the fact that my biological MELD score has already been raised in another state.<br />
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As luck would have it, Mr. Hirsch is on vacation until the 15th of August. There's someone filling in for him, but they're not fully abreast as to what Mr. Hirsch said to me, personally, but they can still do what needs to be done in his absence. What needs to be done, is basically having me see the wonderful (yes, I'm being facetious!) Dr. Selvaggi, again, showing that I've been granted (yet again) both medical & psychiatric clearance to get listed in the Great State of FL (again...I'm being facetious). I'll be listed, as of that day, only with my biological MELD of 9, and whoever is covering for Mr. Hirsch in his absence, will make the appeal to UNOS about having my MELD raised on the basis of my PAH condition. This should, hopefully, take no more than 5 business days after I'm listed. Once that happens (which will probably coincide with Mr. Hirsch's arrival back from vacation, then it's just a matter of getting that phone call.<br />
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I've been thinking a lot about that phone call. Whenever my phone will ring, my heart will skip a beat. I'm almost certain that those who've had transplants in the past have probably felt the same exact thing. I'll have a small bag packed with undergarments, a few personal effects, and toiletries, as well as medications (which are already in a big plastic bag). Then, I'll call a taxi, to go to the hospital where my life will change forever. On the way to the hospital, I'll call my mother, my boyfriend, and my very good friend. I've already decided that I won't call my son, as badly as I'd like to, for the simple fact that he's not in FL, there's absolutely nothing that he can do to help me, quite the contrary, he'll be unnecessarily traumatized. I'll call him after the surgery, to let him know that everything went all right, and that I'll be seeing him soon.<br />
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I've also thought about the whole '90 days' that I'm supposed to stay here, once I'm post-op, and I've decided that if I'm feeling better prior to these 90 days, then I'm going to go back home to NY. What can the hospital do? Take the liver back? I'm just so far from my family & friends that even my own mother told me "Do you know how hard it's going to be , for me, to just go home and leave you in FL while you're recovering?"<br />
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I don't know how hard it'll be, but having a child of my own, I can only imagine that it'll probably be the hardest thing that a parent can ever do. Perhaps not 'the hardest', but it's definitely one of the hardest. The simple fact remains though: I need this operation to save my life. There should be no weeping while I'm recovering, because my life is going to be so much better once it's all over. That's the way I see it, and I'd like to think that's the way my family & friends should be seeing it, too.<br />
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As for FL, I'd be lying if I said that I've grown accustomed to it here, because I certainly have not. Not to say, like my best friend told me, "NY is not the center of the universe. The more you travel & see other places, the more you realize that." However, NY is where my life is and there's no other place I'd like to be.<br />
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I'm waiting, at this moment, for the Transplant Clinic to call me back, to make the appointment to see Dr. Selvaggi again. The psychiatrist told me that they're going to have to type up all of his notes (which seems like quite a large task, since he wrote about 10 pages during the appointment) and once typed up, then he'll fax over his assessment of my psychiatric clearance. He told me this should be done by Tuesday, but I'm going to call today to see if it's possible for them to just fax a more basic letter today stating that I'm cleared for surgery, psychologically.<br />
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If all runs smoothly, then I should be listed, with my upgraded MELD of 22 by the 2nd week of August. It's exciting, relieving, and terrifying, all at the same time. It's out of my hands now, and into Gods hands, which is where it'll stay. Till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-34536520725440872872012-07-13T05:34:00.002-07:002012-07-13T05:34:53.228-07:00Seeing the surgeon...I finally saw the surgeon on Monday, and to be honest, I was <i>very</i> disappointed! He wasn't the nicest guy I've met, and everything was going so smoothly until I saw him, Dr. Selvaggi (the surgeon who came so highly recommended).<br />
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First off, the colonoscopy went well, I've got no polyps or anything like that, so that's fine. However, my mammogram didn't go as well. I have to get a second, more detailed mammogram done because my results came back abnormal, showing that I have calcification in my breasts. This is nothing to be concerned about, hopefully, but I can't really afford to dwell on that right now.<br />
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So, Dr. Selvaggi actually said to me "You're not the first person who came to FL shopping for an organ". I couldn't believe a doctor would actually say that! I've uprooted my entire life to come here, subjected myself to all of their tests and he was talking to me like I'm something stuck on the bottom of his shoe! <br />
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Regardless, he said that my psychiatric clearance was 'vague at best', which is SO untrue because I did get psychiatric clearance to be listed. I wouldn't be listed with UNOS if I didn't get psychiatric clearance! So, I've got to see a psychologist here, in FL, to get psychiatric clearance, once again, and I've also got to see a Pulmonologist so that they can overlook my recent heart catheterization results and confirm that Dr. Ajith Nair was correct in clearing me for surgery, which he is.<br />
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They referred me to these 2 doctors, and when I called them, not one of them took my insurance! So, I had to do A LOT of footwork, and finally found a Pulmonologist & Psychiatrist who will see me on the 17th & the 19th. The 19th is a Thursday, and I'm going back to the transplant clinic on the very next day, Friday, so that I can FINALLY get listed! But when I finally get listed, it's going to be with my biological MELD score of 6!! Then, they take my case to the UNOS (United Netword of Organ Sharing), requesting the MELD increase, just like Mount Sinai did. That'll take about 4 business days to do & once I'm listed with my MELD score of 22, that's when I'll be getting a call PRETTY QUICKLY. It could be a day, it could be a month until I get that call I've waited so long for. So, my surgery will probably take place in August.<br />
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Other than that, I've also had some tragic things happen. My 7 tooth bridge has fallen out, along with 3 of the 4 teeth that were anchoring it, so I now have NO front teeth! I went to the dentist yesterday, hoping that they'll just pull these 'teeth', that aren't even teeth, they're just roots of teeth, and the scheduled my appointment for the 18th, which is HORRIBLE because on the 18th at 2:30PM is when I have to see the psychiatrist! The appointment for the extractions is at noon, but I can get there at 11:30AM, but still, it's going to be horrible to go to see the psychiatrist, who has the power to NOT grant me psych clearance, with a mouth full of bleeding gums! <br />
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I've told the dentist that if anyone cancels their appointment, to call me ASAP & I'll take their appointment. I'm hoping that'll happen. If not, then I'm going to call the psychiatrist and explain to them what's going on, so maybe they can see me on the 20th instead. I highly doubt it, but it's worth a shot. I'm not going to call them until Monday, however, because I'm hoping that I'll get an earlier appointment for the dentist.<br />
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FL Medicaid is SO different than NY Medicaid & it SUCKS!! They barely pay for anything and they don't have many doctors that accept Medicaid, and worse still, is that I've got to pick an HMO. I'm going to try to call the Medicaid office to try to keep my straight Medicaid. However, I've already called the Medicaid Choice line and they said that I'm required to pick a plan, and since 2 of my doctors take a certain HMO, I might just go with that one. However, it won't become active until August 1st, and the dentist that I'm seeing does NOT accept any HMO plans, so I'd like them to charge everything before the 1st, like the extractions and the bottom denture.<br />
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That's the other thing. FL Medicaid doesn't require any authorization for a full denture, but they require an authorization for a partial denture, which takes 6-9 weeks!! There's NO WAY that I'm going to wait that long with no front teeth, so I've opted to pay for the upper partial, which is $750. Thankfully, my Mom & Sam are going to pay for it, so at least I won't have to worry about my teeth for a while. And I can still get dental implants once I get my liver transplant and get settled back in NY.<br />
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So, that's pretty much what's been going on. I'm pretty upset that it's taking so long to get listed, but that's the hardest part. Once I'm listed, then things will happen very quickly, and I should be listed by the beginning to mid August. It's taken a lot longer than I'd have thought it'd take, but I'm almost there! So, I"m just hanging tough until then. Till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-89615696741803712802012-06-20T07:31:00.001-07:002012-06-20T07:44:36.897-07:00Things are in motion...dates are set...I've finally gotten my appointment for the final, and most invasive, test that's required of me in order to get listed here in FL. My colonoscopy is scheduled for June 29th, which is a Friday, so the following Monday, I'm going to call the Transplant Coordinator at Broward General Medical Center (BGMC) and an appointment will be made for me to see the surgeon that week.<br />
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The transplant surgeon is Dr. Selvaggi, who, to my relief, is an excellent surgeon. He's actually the main surgeon for me, as they'll be 4 transplant surgeons working on me during the liver transplant. Hopefully, I will get the call that I've waited 6 years for telling me to come in for surgery on the 3rd or 4th week of July. If that happens, then I will be coming home in October. <br />
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I shouldn't even be thinking about when I'm going to get the call, because it can take longer. I base this on the fact that a woman I've met here in FL had the same exact MELD score as I do, and she was called in 3 weeks after being listed for her surgery. She's now 2 1/2 months post-transplant, and doing very well. Her Dr. was Dr. Selvaggi & she asked me if I knew who my surgeon would be yet, and at the time, I did not. She did tell me that she'd hope it's Dr. Selvaggi because he's the best. I'm not so good when it comes to trusting Dr's, so I sure hope that he is the best.<br />
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On another note, my son, Jonah's, baseball team were playing in the Jr. World Series and he won!! I'm <i>so proud</i> of him, and he's so proud of the gigantic trophy that all of his teammates got. He's probably going to show it off to all of his classmates today! It's news like this that really makes me think "These are moments that are worth living for!" I felt so special when I found this out yesterday, that his team won the world series, but even more, I felt like it would be nothing short of criminal to miss out on these wonderful moments in his life.<br />
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I went to church this past Sunday, something that I haven't done in a very long time, and since it was Father's Day (by the way, Happy-belated Father's Day to all of the daddies out there!), and the Pastor said some very inspiring words. It really touched me and I left mass feeling at peace with myself. As I left mass, everyone was walking to their cars in the parking lot. As I'm walking, I see a wad of bills wrapped in a red rubber band. This woman behind me said "Oh, it's your lucky day", as if I was just going to pocket this money that didn't belong to me, after leaving mass feeling blessed & good about myself. Instantly, I thought to myself 'This is a test and I'm not falling for it!' So, I ran ahead and yelled to those getting into their cars "Did anyone drop money?" People shook their heads no after checking their pockets, and then one woman said to her elderly father 'Dad? Did you lose money?' The old man checks his pockets in his blazer that was on his arm, and I could tell by the look on his face that he had lost money. I asked him "Did you have your money in a rubber band?" He said "It's in a red rubber band". At this point, I handed him the wad of cash and told him that he should put it in a safer place. His daughter thanked me, as did he, and I felt very good about what I'd done. I felt like I did the right thing, and I know I did. I spoke to my Mom about it that day and she said "You don't take what doesn't belong to you. God was watching you and he's proud that you did the right thing." I couldn't agree more!<br />
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I've decided that I'm going to attend mass every Sunday, since, coincidentally, there's a Catholic Church literally 3 buildings down from where I'm living at, so it's so close. I may also go to confession, since it's been a <i>very </i>long time. The priest said some very touching things, things that he's experienced in his life that are almost identical to what I've experienced. He said that his father died when he was 14 years old, and the only sadness that he feels is the sadness that he didn't get to know him as an adult. I wish I could say the same, but there's a lot of sadness that I feel about my father. I'm sad because he died so young, sad because he never got to see me grow up, sad because he never got to meet my son and my father wanted a son more than anything. I've got a lot of sadness when it comes to my father. But, I've accepted this, and am moving on in the best way that I know how to. For a very long time, the only way I dealt with his death, was to not deal with it & self-medicate. Those days are long gone & I'm never looking back. So, I've got my own coping skills, skills that everyone should get while growing up, but that wasn't the case with me. No point in dwelling on the past, I've just got to look to the future. And I've got a lot to look forward to! Till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-42271572403516983452012-06-08T05:27:00.001-07:002012-06-08T05:27:10.227-07:00Getting listed in FL...I must admit that I was a little upset about the way things are unfolding here in FL. There's many tests that I must get done in order to get listed here. I really wish that I'd have known that fact prior to my arriving here & rearranging my entire life. I could have gotten all of these tests done before I changed my address & moved out here. I was expecting to come here & get listed ASAP. However, that's just not the way things are turning out.<br />
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I must get a Colonoscopy, Mammogram, EKG, CT Scan, US-Liver Doppler (aka ultrasound) and blood work. The most invasive test, by far, is the Colonoscopy. I see no need to get that done, especially since I've had an Endoscopy done back in February of 2011. However, if it was up to me, I'd choose to get none of these tests done & I'm not the doctor.<br />
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More red tape to go through and what's most shocking to me, is that this all seems just a little too familiar. I'm used to all of these highly invasive tests, and having to 'jump through hoops' to achieve the desired goal. So, I was waiting for an authorization for the CT Scan, which, fortunately, came in yesterday and I've now scheduled all of these tests. <br />
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I go for the CT Scan, EKG & Ultrasound on June 16th (just my luck, the day after Sam leaves), and the Mammogram on June 18th. I was fortunate enough to find another Gastrointerologist who will see me a lot sooner than the GI Dr at the Transplant Clinic would. I have an appointment on June 12th which is a consultation for the Colonoscopy, basically explaining to me what will happen (as if I don't already know, or if I really want to know), then scheduling the actual test to be done at the Outpatient Clinic of Broward General Medical Center. The procedure should be done about 2-5 days after my consultation on the 12th, the GI Dr is aware that time is of the essence and it's crucial that this test get done ASAP. The GI Dr that I was referred to from the Transplant Clinic, had the earliest appointment for a consultation on July 2nd!! That's just completely unacceptable. So, I took it upon myself to find another GI Dr that would do the Colonoscopy sooner, and was fortunate enough to have found one who, coincidentally, will do the procedure at the very same hospital that my transplant will be done at, Broward General Medical Center (BGMC). <br />
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Once these tests are completed, I will see the surgeon at BGMC and will be listed as of that day. Once listed, all I have to do is wait for the phone call to come. I spoke to a woman who's 2 months post-op and her MELD score was same as mine (22) and she was listed for 3 weeks and got the call that changed her life forever. I can only hope that it takes a mere 3 weeks for me.<br />
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It feels surreal, like a goal that has never been attainable to me. I think that reality of it all is sinking in and it envelops my every thought and action. I just can't stand the waiting! It's like the angel of death hanging over my head. Then, I stop and think, "Do I even feel like I'm dying?", "Am I dying? Or do I just think that I'm sick because a Dr told me that I am?" All of these thoughts, and more, come to me. I push them aside and try to stay focused to the desired goal. But it's been so long, that I don't even remember what the 'desired goal' is anymore. Do I really want to have this surgery? Is the quality of life after transplant something that I can, and/or would want to live with for the rest of my life? What do I have left to accomplish on this world? What do I have to be alive for? <br />
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I have my son, family and friends, and I owe it to way too many people to let them down. But, I never asked for this. It's so hard because it's out of my hands, beyond my capabilities of controlling. I think it's just coming to the understanding and acceptance that there's some things in life that no mortal can control. Once that's been accepted, I mean fully accepted, then these questions that I think about will not be thought about. Am I even making sense? I feel myself getting more dim as time goes by and that's when it hits me that something is terribly wrong. I just keep myself busy and keep my mind as active as possible to avoid it.<br />
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On a brighter note, my boyfriend, Sam, is coming today and will be with me for a week. It's very nice to have my friends, family & loved ones here with me. I really underestimated how important it is to have family support. I'm very grateful that I have it. I miss my son the most, and he will be here in about 2-3 weeks (June 26th), and will stay with me for a few days. He'll be spending his 11th birthday here, and he's got loads of gift suggestions and I want to fulfill every one of them! So, till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-77145715470073791882012-05-28T05:30:00.000-07:002012-05-28T06:35:34.232-07:00I have arrived! The wait continues...I've been in Pompano Beach, FL for over a week now. I will, briefly, say what's htrappened in the 10 days I've been here. First, I was not Medicaid active when I came down here. I had figured that would be the case. I learned, quickly, that it's very hard to get around without a car. This is something I had anticipated, but it's not that bad. I've actually gotten a lot done in the short time I've been here.<br />
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I went to the Social Security office, and became a legal, Florida resident. Everything to do with Medicaid is done online here, which is a good thing, but can sometimes be a pain. I had to apply 3 times before finally getting a phone call interview to state that I was now Medicaid active. Since I had Medicaid in NY, all I had to do was transfer my NY Medicaid to FL Medicaid, since it's illegal to have Medicaid in more than 1 state. I've always thought that Medicaid was a government-run program, and, in a sense, it is, but it's done by state, something that I thought to be a little odd. So, I applied not only for Medicaid, but for food stamps as well. I've been approved for both, and strangely, I'll be getting a lot less than what I was getting in NY. It's only temporary, so that's ok.<br />
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Also, when I went to the Social Security office, I found out that I'll be getting $24 less than what I was getting in SSI. Strange, because I'm actually paying more rent here. Again, all of these things are temporary, so it's ok.<br />
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As for Broward General Medical Center, where I'll be having my transplant, I've already touched base with them. I didn't expect what was told to me, however. There's a number of tests that are required for me to get, unnecessary tests, if you ask me. The biggest one, is a Colonoscopy. It's required by FL law that I have these tests done. I've already had an Endoscopy, in February of 2010, which is sufficient for the hospital here. They've been faxed a phone book sized papers which contain all of my medical records. A few were missing, but they were quickly faxed over. I also need a CAT Scan & a Mammogram. What's so surprising to me is that I'm so accustomed to hearing this kind of news, having to take very invasive tests. But, I've never had a Colonoscopy before & I was hoping for it to stay that way. But I've came too far now to back out over something as minor as a test.<br />
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So, I was thrown a little curveball, but it's only setting me back a week. My FL Medicaid won't be active until June 1st. That's how Medicaid usually works, on a month to month basis. That means that I must wait until June 1st to get the Medicaid approvals for the Colonoscopy, Mammogram and CAT Scan. I also need to have blood drawn, and an ultrasound. They cannot submit the approval until I'm Medicaid active. It takes about 1-2 days to get the approval, and once the approval is in (most likely by June 2nd or 3rd), I can schedule these appointments. They will expidite the appointments for me, and, realistically, I should expect to be listed in 3 weeks (sometime around June 14th). I was hoping to be listed sooner, but it's not that big of a set-back.<br />
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I've already received my Medicaid & food stamp EBT cards, which is something that other people wait months for. Once I'm listed at Broward General Medical Center, that's when the time starts. Like I've said in previous entries, the wait time here is very short, hence the reason that I'm here. It'll probably be a month, maybe less. However, it could take up to 6 months, although I was told that people never wait that long. A few good things are on my side, however. Such as (& it may sound cruel, but this is the way it works) the 4th of July is coming up and there's a lot of fatalities from car accidents here during that time. There's also boating accidents, and other ways that people meet their unfortunate early demise. But they're giving the gift of life to so many other people. That's priceless, and speaking for myself, I think there's no better way to honor a loved ones death by donating their organs to those who would die without them.<br />
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When I first arrived here, I was very distraught. I just felt so out of place here & the reality of the situation really hit me hard. It's finally going to happen. I'm getting my liver transplant that I've been waiting 6 years for. My life is going to change in ways that I would never be able to anticipate. I just want this over with, and I feel like I'm in commando mode. Just going through the motions to get this done & live a life that I'd like to live, free of liver disease.<br />
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I know I said I was going to keep this brief, but there's so much that I've been feeling, and so much has happened, that I just had to get it out of me. Yes, I'm scared (which is a questions that I've been asked many times), but I'd also feel relieved once I'm post-op.<br />
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I think when I first got here, I was feeling very homesick & lonely, too. My family & friends have mailed out birthday presents (my birthday is tomorrow, and I'm going on a charter boat to fish. They have huge fish here, and of many different variety), and I've mailed out postcards to some friends & family members. My boyfriend already bought his plane ticket for June 8th-15th & I can't wait until he gets here! Also, my son & his father are coming down for his birthday, July 1st. There's a grill here that works great, as well as a pool, so I'm pretty sure that he'll have a lot of fun when he gets here. Friends & family is all I got right now & it's all I need. I need the support of my friends & family right now more than ever.<br />
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I'm going to end it here, and as of right now, my internet access is pretty limited (I've been using my Android phone & it's really proven to be a life-saver), but I also won a laptop on Ebay for a great price! It's expected to arrive between June 2-4th. Once I get that, I'll write a new blog entry. <br />
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I'd just like to take a moment to thank everyone who's helped me through these hard times. Your love & steadfast support has been vital to me, and I appreciate it more than words can say. Till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-72630125458778329822012-04-15T07:38:00.000-07:002012-04-15T07:38:19.177-07:00Getting ready for the trip...I've got my Heart Catheterization scheduled for Wednsday, April 18th, at Mount Sinai. The same doctor who performed the last one is scheduled to do this one, so I'm going to have him not even try to go into my neck (they couldn't get into the vein in my neck last time, spent 20 minutes and a lot of Morphine & aggravation for me, trying to do it), and just do it in the groin area (the crease where the thigh & torso meet). I like this doctor, nonetheless, because he tells me the results right as he's doing the procedure, doesn't make me wait for a week to get the results, waiting on pins & needles. All I want to hear is "You're tension levels are great! You're still medically cleared." Anything other than those words will cause me massive, paralyzing depression! It will mean that I cannot go to FL, or I can, but it'll just be a waste of time, because I'll be off of the list, and will need my medication adjusted, require another heart catheterization 3 months after my medication gets adjusted, and it'll just be a nightmare! It gives me chills just thinking about it, to be honest. I'm fairly certain that won't happen, because I've quit smoking, I've got no problems breathing, been exercising, and I've never felt greater! So, all should be well. Keep me in your prayers for that one, however.<br />
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With that said, I've got quite a lot going on. I'm still going on my 311 cruise (I've spent close to a grand on this cruise, and I really need the vacation, as well), and I leave to Miami on May 9th, and I know I'm going to spend money while on the cruise, which, unfortunately, I'm going to have to keep at a minimum. I'm paying for things now so that I'll have available funds and won't be broke afterwards. I'm going horseback riding on the beach (the horse actually goes deep & swims in the ocean! Pretty cool, huh?) and, of course, my personal favorite, jet skiing! I'll be doing these activities on the island in the Bahamas, Half Moon Cay (the private island that 311 owns and will be performing live at, as well). I've also noticed that for the concert that's taking place on the cruise has seating. This I knew & I had thought that I'd be in the nosebleed section, but, to my astonishment, I'm in the 2nd row from the stage! Pretty awesome, I must admit. I know I'm going to have a blast...the only thing that I need to worry or concern myself about is...nothing really! I'm going to have the time of my life, and food & non alcoholic drinks are all complimentry on the cruise, so I won't be spending tons of money while on board. It's only 4 nights and the person I'm sharing a cabin with told me that he didn't spend more than $200 last year when he went, so I shouldn't spend more than that, either.<br />
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I arrive back in NY on May 14th. I've decided that I'm going to cancel my NY Medicaid on May 8th (the day before I fly out) because I'll only be in NY for a day before returning to FL (in Fort Lauderdale) on the 16th of May. I'm then going to re-apply for FL Medicaid that same day that I cancel my NY Medicaid, so that I can be approved by the time I get to FL. I've got a 'safety-net' while down there, thanks to a very good friend of mine (you know who you are if you're reading this!) who added me as an authorized user on their credit card...just for emergencies. NFT will reimburse me for things that I need while there, however, they do just that. Reimburse. So, if I don't have the money to pay for things that are necessities (eg. food, transportation, etc.), then I won't be able to get reimbursed. It's not like I have unlimited access to those funds (which, by the way, are surprisingly low. For all those reading this, the time has come where I really need the finances to make this happen, so please make a donation in my honor, to NFT, by clicking <a href="http://patients.transplants.org/faf/donorReg/donorPledge.asp?ievent=485635&lis=1&supId=350350258&patientPID=15665" target="_blank">here</a>. Every donation is much appreciated!), I have to show proof of what I'm using things for, and get reimbursed by check, and only based on how much funds I have available, which, like I said, are not much. I can easily see what I have available right now being depleted in 2 months, at the most. That's not very comforting to me, and I definitely don't want to have to come back to NY because I didn't have enough money to stay there. I also don't want to have to rely on one person (my friend who's paying for my lodging while there) to take care of my financially. It puts me in a bad position & I've never been the type to depend on others. Unfortunately, this is something that my friend is willing to do, and without her help, this would not be possible for me. I can only be grateful & show my gratitude in the best way I know how.<br />
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Well, that's about all for now. I'll try to post after my heart catheterization. Till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-47049728976030444652012-04-03T07:30:00.002-07:002012-04-15T07:07:50.336-07:00Jumping the gun...Going with the flow...Well, seems like I've spoken too soon! First off, I'd like to say that a lot of stuff has happened since my last entry, and I will get into that here.<br />
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My boyfriend, Sam, cannot donate to me or anyone else. I'm not even certain that he's spoken to his family about this, but the results are in from his MRI and he cannot donate. The reason being is because his liver volume is as follows: 73% equals his right lobe and 27% equals his left lobe. They must take his entire right lobe for the procedure.<br />
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For those few out there (or maybe many) who do not know how a living liver donation works, I'll explain: The recipient (being me) with the diseased liver gets their entire liver removed. While this is happening, simultaneously, a team of surgeons are working on the living donor. The living donor must meet certain criteria (such as organ ABO match, which is blood type equivalent, and me being blood type A, means that I can receive from blood types A or O & that's a very good thing, because 83% of the population has blood types A+/- & O+/-. The worse blood type for a recipient to be is O. O can only receive from O, making it much more limited as to who can donate, also making it a much more desired organ type for those who are very sick) and once that criteria has been met, the surgery consists of having the healthy living donor's entire right lobe of the liver removed, which is 60% of the liver, and that right lobe replaces my entire diseased liver. The donor is left with 40% of their liver, the left lobe, and in 3 months, it fully regenerates and has 100% function of their original liver. What regenerates isn't the removed right lobe, but the left lobe grows to fill the empty space that was taken (the 60% of their liver, the entire right lobe), and the same exact thing happens in me, as well, only vice-versa (the right lobe grows to 90% of my liver's original size in 3 months, with 100% function of a normal, healthy liver). It will never be the same exact shape, anatomically, but it functions just as good as an entire liver (right & left lobed liver). So, the end result, is 2 perfectly functioning livers.<br />
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Ok, so now that the 'surgery lesson' is done with, if you re-read the 2nd paragraph of this entry, you'll notice something that's not correct. Sam's right lobe is 73% of his entire liver and his left lobe is 27%. On most (or it could be only some, that I'm unsure of) people, the right lobe is no more than 60% of their liver, so that 40% of their liver (the left lobe) is what they're left with to regenerate. It's a necessity that the entire right lobe be removed. If they were to remove Sam's right lobe, he would only be left with a small left lobe, which is only 27% of his liver, meaning that he cannot donate safely without putting himself in mortal danger. Simply put, he would not survive the surgery because he would have an insufficient amount of liver mass. It's been brought to the IDAT (Independent Donor Advocate Team's) meeting, and this was their determination (verbatim):<br />
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You have completed your living liver donor evaluation. As we had discussed, at the completion of your living donor evaluation you are presented at the living liver donor review meeting. Your case was reviewed today and the Donor Advocacy Team discussed the specific components of your evaluation in a multidisciplinary approach. Our Team's consensus decision is that you are unable to safely donate a portion of your liver.<br />
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The committee felt that it was medically unsafe for you to be a donor. We feel that it is unsafe because your liver volume was too small for the volume that the recipient needed and the donation surgery would not have left you with a safe residual liver volume. Enclosed are copies of your laboratory results, MRI and cardiology results.<br />
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That's what the letter says, and even though they've called Sam and we had a very emotional discussion about it, which left me feeling sad, hopeless, and full of so much despair, I also felt really bad because Sam was telling me how sorry he was and it's not his fault. He was willing to undergo an unnecessary surgery for me, and was already making preparations to do this, since he was pretty confident (as was I) that he would be a perfect candidate to donate. His lab's, MRI & cardiology results came back perfect, so if it wasn't for the fact that his liver is not perfectly anatomically shaped (which is what you're born with), then he would've been a perfect candidate. But, sadly, that was not to be. I think that since he was the only person who actually got screened (and getting screened, by the way, doesn't mean that you're consenting to surgery! It only means that you're interested in donating, and my insurance pays for all screening), and more than that, he was ready to do this, means more to me than anything. This whole experience was <em>very</em> stressful on the both of us, but it's also brought us closer together.<br />
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I'm very surprised at how all of this has worked out, to be honest. This was my last chance. No one else is getting screened, and there's only one person who's called to get screened and I'm pretty certain that they're not serious, and even if they are serious (not to say I'm being picky, cause at this point I don't care where the organ comes from!) I will not accept it. I'm 99% certain that they're not serious, and I'm not going to get into details about that. So, there's no one who is going to get screened, and that's a done chapter. In an odd way, it's almost better to be blissfully unaware of where the organ comes from, and not to put someone that I care about in jeopardy because of me. What if the surgery would've been a success for me, but something bad happens to Sam? I'd feel just awful.<br />
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There is a bright silver lining in this cloud, however. I've done some research, and Broward General Medical Center in Ft. Lauderdale, FL has a much shorter waiting list for someone with my MELD score (MELD is an acronym which means: Model End-stage Liver Disease, and it determines who is a higher priority to get a liver from a cadaver. It ranges from 6-40) and blood type. My current MELD score is 22, and soon to be 25, once I get another Heart Catheterization this month on the 18th, and if it shows that I'm still medically cleared, and, God willing, I am, then I can be listed in FL with a MELD of 25. I've quit smoking cigarettes for 2 months now, I take Yoga classes almost daily, and I'm keeping myself in the best physical shape possible to keep my medical clearance. I've called Broward General Medical Center (BGMC) and they've told me that someone with my MELD score of 22, and soon to be 25, with blood type A, would get transplanted fairly quickly. I asked what does 'fairly quickly' mean, and was told a month, maybe less. It's actually 0-6 months, but since nothing is guaranteed, I was told that for the majority of FL residents, it's a month, maybe a little less. That's great news!! I'm now having all of my medical records from Mt. Sinai sent over to BGMC and, once reviewed, Dr. Rick Hirsch, BGMC's Transplant Coordinator, will call me and give me more details. One thing I do know is that I would have to live in FL 3 months post-op and become a FL resident.<br />
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I've met a very wonderful person who is willing to help me. Her & her husband have agreed to pay for a fully furnished sublet for me for the 4 (or more) months that I'll need to be in FL. I figure that I'll have to go FL for the clock to start when I get listed there, and since he said a month maybe less (the wait time to be called in for surgery), then I'd have to be there a minimum of 4 months. It could be as long as 8 months, but I was told that it's <em>highly</em> unlikely that I'd be waiting more than a month for a call (once I've longed to hear for 6 years) telling me that they've found a match for me, and to get to the hospital ASAP. If it wasn't for their extraordinary support, I would never be able to do this on my own. My NFT funds aren't even enough to pay for a one month sublet, let alone 4 months, maybe more. <br />
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The plan now, is to get another heart catheterization (which BGMC has advised that I get done here, so my MELD score can go up to 25, and that it'll show that I'm still medically cleared for surgery) which is already scheduled for April 18th, speak to the transplant coordinator, Mr. Hirsch, get all the details that I need, go down to FL where I can be nearby when that call comes in (there's a place that I can stay in for the month of May, but after that, I'd need to be in a place of my own), even though the woman at the transplant center at BGMC told me that they have certain agreements with some airlines where when a liver becomes available, I would get bumped up to the next flight to Ft. Lauderdale. However, I'd rather not do that. I'd rather be closer when that call comes in, so that I can just take a car service to the transplant center & call my family and have them come to FL. I've already discussed with Sam, and he would come down to FL when I get the call and am ready for surgery. There's several reasons that I'd rather be close by, and it's because I'd like to already have an apartment set up <i>before</i> getting that call, not after. After, I'm going to be feeling so ill, I don't think I'll be physically capable to doing much of anything other than rest. Good news, is I've just found a place in Pompano Beach, FL, that is fully furnished, and I've spoken to the owner, and he's agreed to a monthly rate for me. There's a pool, sundeck, fully furnished kitchen (which is important) and 2 queen sized beds. Also, cable, wifi, and all of the necessary ameneties. He's given me a very reasonable price, and I've explained to him my situation, and he's agreed to a monthly rate for as long as I need to be there for. I've told this to my friend & her husband, and they think it's a great idea and are all for it, as am I. They've assured me that I've got nothing to worry about, and to stay focused on getting listed in FL, and get myself ready for surgery. They've been a Godsend to me! I was in Palo Alto, CA for a week, and I met their family, and had a great time. It's so wonderful to have met such generous people who are willing to help me, and I've pretty much convinced myself that people like that just don't exist anymore. I've never believed in 'charity' for myself, and I've always done things, even things I'm not proud of, to get my own money & not to rely on anyone. This is different. The help is being offered to me, I didn't ask for it, and certainly didn't expect it, so the best thing to do is to be humble and accept their generous help. I need this more than anything in the world. My life depends on it. Sure, I can stay in NY & rot on the waiting list for a year and experience all other symptoms of chronic liver disease, which I've already had about 90% of them, and wait until my body starts to 'shut down'. But I'd rather die than have my loved ones watch me go through that agony. It feels very weird, because in all reality, I'd be dead, or dying in NYC on the 'waiting list' if it wasn't for their help. How do you thank someone for that? It seems like such an understatement!<br />
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As I've said, I've scheduled another Heart Catheterization for April 18th and what's a little upsetting is that my MELD score has <em>just</em> been raised to 22, even though when I saw my Dr on the 2nd of February, I was told my MELD would be raised to 22, so they will not be able to raise it to 25 only until 3 months have passed since my last MELD increase. It's so absurd that I should be the one who suffers for Mt. Sinai's procrastination on getting my MELD raised! That should've been done over 2 months ago. I'm still going to get the heart catheterization, because it'll be required to show that I'm still medically cleared for surgery...hopefully. However, I've been taking my medication and I don't feel out of breath in any way, in fact, it's quite the opposite. I'm also not getting any chest pains (angina) or any other PAH symptoms. I'm able to do more things than I was capable of doing before and I feel great! Once I get the Heart Catheterization, I'm going to FL to fill out any information and see the transplant team in BGMC, by that time, all of my information will be there, since Mt. Sinai is faxing it over right now as I write this. Once I speak to the Transplant Coordinator, Mr. Hirsch, I'll know more and can then plan what exact date I'll be moving to FL. I'll write another entry once I know more. Till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-13617592621318586582012-03-17T05:59:00.000-07:002012-03-17T05:59:59.803-07:00The screening has been completed...Well, if you keep up with the 'ongoings of my life', then you know that Sam has been screened and did most of what he's got to do (ie. had MRI, spoke to surgeon, Hepatologist, Transplant Coordinator, Social worker, and everyone that is part of the Transplant Team, which is called the IDAT, which stands for Independent Donor Advocate Team.) and he's currently awaiting the results of his testing.<br />
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I cannot say much about this, since it's something that is personal, and it's not right for me to divulge the results of his screening. Nor do I want this to deter anyone from getting screened, if need be. <br />
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Mount Sinai can only screen one person at a time, but I will say this: There is someone who has called who wishes to be screened, if all does not work out with Sam, for whatever reason. This is definitely a good option. However, I'm torn in all of this. I'm not comfortable with putting a perfectly healthy person, under surgery, for me. On the flip-side, I <i>definitely</i> don't want things to get so bad for me, where I can no longer function, and am literally on the brink of death. The surgeon told me, that with my current MELD score of 22, I would definitely <b>not</b> get a cadaver donor anytime soon, and due to my PAH, as you all may already know, I can lose my medical clearance at anytime. If that was to happen, then I would be off the list, any living donor screening must cease, and I would be referred back to the Pulmonologist & Cardiologist, where my medication would be raised/adjusted and I would have to wait 3 months, get yet <i>another</i> heart catheterization after 3 months of being on the adjusted medication, and if my PAH is under control again, then I'll be where I left off on the active list, and living donor screening can commence once again. However, this is something that is likely to happen. It can turn into something that would just drag on & on, and it could cause indefinite delay in having my surgery.<br />
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These are the frightening prospects of not going the living donor route. My surgeon & Hepatologist both recommend it, the success rate is much greater due to the fact that the surgery would be planned, a date that is suitable will be set for all those involved (the living donor, me, the recipient, and the Transplant team, both mine & the IDAT), and I would not have to wait until I'm on 'the brink of death' (which is exactly what my surgeon told me, verbatim) to get a transplant. The reason that the success rate is much higher when done the living donor route, as opposed to waiting on the list for a cadaver donor, is because I won't be so deathly ill when I undergo the surgery, which makes my recovery much shorter, and minimizes the risks of problems arising due to being so sick when having surgery. Simply put, the better physical condition that I'm in when I have the surgery, the better my chances of having a speedy recovery are.<br />
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When I spoke to my surgeon, I asked him how many liver transplants he had done in his life. He's done about 100, which is what he said. I also asked him out of those 100, how many patients had he lost, and he said "None...thank God." I asked him what will happen when I wake up from surgery and he answered "You'll see me & another surgeon, standing by your bed, taking your vital signs every minute, and you'll hear my voice telling you that the surgery went ok". I said "Hopefully, I'll hear that". He then looked me into the eyes and said "Look. I wouldn't do this surgery if I thought that there was significant risks to you. You're a young woman who will have many years of life ahead of you." Those were very comforting words, and I believed him to be sincere. I think that someone who's done roughly 100 liver transplants, with no fatalities, is a pretty darned good record, in my opinion. I would think that after doing 20 liver transplants, that the surgeon would pretty much have the procedure down, due to the experience. <br />
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Well, I leave to CA Tuesday, March 20th, and will be away for a week, and will not be able to post nor will I be here to hear what the results were, in regard to Sam. Only Sam will be contacted about the results, and I definitely respect his confidentiality, so I won't go into details in that regard. Mount Sinai did tell him that they'll call him in a week (this coming week) and tell him what the next step is from here. If all of the screening went well, and the biggest part of that is that he's got no infectious diseases, and that he must have enough liver mass to be able to donate, without causing significant harm to himself. If he doesn't have enough liver mass to donate, then that 'significant harm' would prevent the him from undergoing surgery and he would not be able to donate, and with good reason. Also, his biliary ducts must be properly aligned and if they are, then he will be contacted as to what needs to be done to continue his screening. I will be in contact with him during my stay in CA, and he'll tell me how everything went, however, I will not share details of that here, I will only say if he's a candidate for surgery or not.<br />
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I'm really keeping my fingers (& toes! lol) crossed for this! I'm very hopeful that all will go well, and his screening will be completed, and a surgery date can be set. I will keep you informed. Till next time...Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-983796520131575676.post-50194924260331941612012-03-08T06:09:00.000-08:002012-03-08T06:09:46.803-08:00My living donor...I've been hesitant to say who my living donor is going to be, and I'm going to keep this person's anonymity, at least, for right now. This person has already had blood work, and is a match, and goes for their screening, which is going to be all day, both days, on Monday and Tuesday, the 12th & 13th of March. <br />
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I'm not nervous that this person will not be able to donate, because I'm sure they will, but it's just scary having someone put themselves in jeopardy, not really in jeopardy, but to go through an operation, for me. I really wish there was another way. <br />
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I spoke with the surgeon, who was a very nice man, and he told me that even with a MELD score of 22, which is what it's currently at, I wouldn't get a cadaver liver anytime this year, and more than likely, my PAH will not maintain it's current levels, which is what makes me medically cleared for surgery. What makes a liver transplant more dangerous, is the fact that those who get a cadaver donor are very ill by the time they have their surgery, and if you're very ill for such a serious operation, then the chances of having something go wrong are much higher. By getting my liver transplant now, the chances of success are far greater than waiting until all of the horrible illnesses that come from liver disease happen.<br />
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So, I'm pretty much on pins & needles until Tuesday, which is when I'll know if this person is going to actually be my living donor. I sure hope so. <br />
<br />
On the brighter side, I've been taking yoga classes, and they've really been working wonders for me. I'm also pleasantly surprised that I'm more than able to do everything that everyone else does, if not, more than the average student. The only 'limitations' that I thought I had, were the ones that I've put upon myself! It's also helped with staying smoke-free, which I've now been for over 3 weeks.<br />
<br />
I will write a longer entry on Wednesday, after I know what happens with my potential living donor. Till next time...Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-983796520131575676.post-67889751234149137852012-02-09T11:43:00.000-08:002012-02-09T11:43:47.463-08:00The screening process begins...I've now got three appointments to see the surgical coordinator, anesthesiologist and the psychiatric evaluation on February 17th. All three appointments are very close together, maybe a little too close together, because my first appointment is at 9:30AM at the E98th Street building, and that one is for the surgical coordinator, then at 10:00AM, I've got to walk about 2-3 blocks to the main hospital where I've got an appointment with the anesthesiologist, after that, I go about one block up to my final appointment (and probably, the most boring/challenging) to see the Psychiatrist to be evaluated, as well.<br />
<br />
I've got no fears as to seeing the psychiatrist to be evaluated, I just don't know exactly what they're going to say to me. I always like to be prepared for those types of questions, and have answers ready to tell them. But, I guess I'll just have to play it by ear at this point. That's fine, I'm just going to answer the questions, without giving more information than is necessary (which, sometimes when I'm caught off-guard, I start to talk about things that are not relevant to the questions that I've been asked, giving away too much unnecessary information! I've come <i>way too far</i> to make idiotic mistakes like that now!).<br />
<br />
As for other news, I've got two potential living donors who wish to be screened, which is really good news! I do feel a little torn, however, since both are, obviously, very close to me, and I don't want to put <i>anyone</i> in harms way for me. But, as I've said in the past, knowledge is power! I've been dedicating my time to know <i>as much as possible</i> about the living liver donation program at Mount Sinai. That's important, and I've told both (as well as any potential future) living donor candidates to do the same.<br />
<br />
It's hard for me to relate to that, since this is a completely voluntary decision made of their part, and, I know it's not fair for me to compare myself to any potential living donors, but I feel like this is a little unfair. This is completely voluntary for them, but it's not voluntary for me. No one ever asked me 'Hey, Vicky, wanna get a liver transplant?' No. In fact, I was told 'Either you undergo a surgery that has <i>many</i> risks, or the odds of living to 50 years old are less than 20%'. I've even had the original Gastrointerologist back in 2007, when I first discovered that I had liver disease, tell me 'You know you're going to die from this, right?' That was <i>really</i> hard to hear those words, and perhaps, when told so bluntly like that by a professional, I just couldn't deal with that, which lead me to divulge in my substance abuse problems, because I just didn't want to accept what he had told me. I wanted to 'wake up' from this nightmare, and be ignorant about my illness and, in a lot of ways, be in total denial as to how serious my illness actually was. Ignorance can be bliss, for some. But not when it comes to your health! We have one chance at this life, and once your health is gone, then most people take it one of two ways. They either a) be in total denial about the magnitude of their illness and/or make the decision to not see any doctors, ever again, and just die from their illness, or b) do all they can to prolong their lives, and become eager to know what can be done about their illness, and that's when the 'survival mode' kicks in. The will to live & the will to want to live and not give up. I've been torn between these two courses of actions, but, in the end, I've decided that I will not live in denial of my illness...I just can't. I've got too much to do, so many wonderful things to experience, things that I've yet to do with my life to just let it end here. Not like this, and not at this time. I've got too much to live for, and perhaps, in a way, everyone does, but not everyone can deal with all of these problems and continue to fight them.<br />
<br />
It's just amazing that something that seemed so far off, is now right around the corner, and I hope that God gives me the courage to walk into that hospital, sign all paperwork and 'put my life in the surgeons hands'. That's going to be the hardest part, for me. Having to willingly give them my arm, have an IV put in, have the anesthesiologist inject me with general anesthesia knowing that there's a chance (even if it is a small one) that I may not wake up from this surgery. All of the things that I want to say to my friends & family before I go into surgery. That's going to be really hard for me, too. <br />
<br />
I'm not going to be a 'drama-queen' and say my farewells to everyone prior to surgery, but I feel like maybe I should say something. Perhaps that's just something that i won't be able to do. All of this is very difficult and very real for me to accept. But, this is what needs to be done. My liver disease will only get worse over time, and it's not even the liver disease that will be fatal, it's the Pulmonary Arterial Hypertension. I've never truly understood how serious my PAH was/is. I should've realized that long ago, because I know how much that medication costs and it's insane! The Letairis costs $5,300 a month, and the Adcirca costs roughly $1,400 monthly. That's a lot of money and the doctor had to put in a special authorization to my insurance for that and it was approved (thank God!) because if they wouldn't cover that, then I'd already probably have one foot in the grave by now, maybe both!<br />
<br />
So, I will keep advised as to how the screening for potential candidates for a living donor goes, and if there's anyone who wishes to know more about the living donor process, please feel free to contact me, and you can check out the links provided on this site, or email me and I will share that information with you. Just so you know, I'm blood type A+, meaning, that I can accept a potential donor who is: O+, O-, A+ or A-. Thanks! Till next time...Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-983796520131575676.post-20933417360528395922012-02-02T12:44:00.000-08:002012-02-04T07:01:12.092-08:00Time's up! The decision must be made...What a bunch of drama! I hate to start off an entry like this, but there's really no better way to explain how I'm feeling right now. Ok, first off; I saw the liver specialist (Dr. Schiano) today, and I always leave there feeling like <i>shit</i> (and I know 'shit' ain't a feeling, but it is for some!), especially going there by myself and having to take all this in with no one to support me when I leave his office, feeling like an emotional train wreck! <br />
<br />
Here's the situation: I had several questions that I wanted to bring up with him, and I wrote them down (since my memory is pretty bad), and I'll share here what the questions were and how they were answered.<br />
<br />
<ol><li>Q-Recent lab results have shown that my AST, ALT & Alkaline Phosphotase have, strangely, shown normal, after being <i>extremely high</i> ever since I was diagnosed with liver disease. Why is that? Also, why are my RBC's, Hematocrit & Hemoglobin low?</li>
<li>Q-What forms of Birth control can I get on?</li>
<li>Q-I'm in <i>serious need</i> of Dental Implants. What are the chances of success, and I will I encounter rejection issues, since I need not only dental implants, but bone grafting and a sinus lift, as well?</li>
<li>Q-I'm going to FL on May 9th until the 14th. Would it be advisable to get on the FL waiting list for a transplant? Would my NY Medicaid cover this? Is it more trouble than it's worth?</li>
<li>Q-How long am I expected to be on the NY waiting list? What is the length of the medical clearance that I've just been given as of December 19th, 2011? The Pulmonologist informed me that if the transplant is not done in 6 months, another heart catheterization would be required. Is this true?</li>
<li>Q-How can I get any potential living donors screened? What exactly does the process entail?</li>
<li>Q-Is there <i>any </i>possibility that a liver transplant is <b>not</b> necessary? Has this ever been known to go away?</li>
<li>Q-What is the life expectancy if I choose <b>not</b> to undergo surgery?</li>
<li>Q-When can I be expected to have my liver transplant? Regardless of living donors, if I have to wait for a cadaver liver?</li>
<li>Q-If I got a cadaver liver transplant, would it be a full liver? Is the wait time less if I was to get half of a cadaver liver?</li>
<li>Q-Would my insurance pay for a home health aid/nurse attendant after my liver transplant? If so, for how long? If not, how long would I require, if at all, assistance with daily activities?</li>
<li>Q-I've been feeling very depressed lately. Would it be harmful to get on some type of Anti-Depressants? (I can't believe I'm actually considering that, but for me at this point, I feel that it may help me with coping with all of this stress)</li>
</ol>So, there's the questions that I've asked and here are the answers:<br />
<br />
<ol><li>The low HCT, RBC's & Hemoglobin means that I'm anemic. I should be taking Iron vitamin supplements.</li>
<li>No oral contraceptives since they can cause clotting issues, and for someone who has PAH, that can be <i>very</i> dangerous.</li>
<li>After transplant, when my PAH no longer requires medication (which, for 4 out of 5 people who have PAH and Cirrhosis, in one year the PAH goes away on it's own, post-transplant). No action for dental implants is advisable pre-transplant due to the PAH. Also, since my platelets are low, even by getting a platelet transfusion, the transfusion only raises the platelets for about one hour. Constant platelet transfusion can lead to serious transfusion reactions, such as, infection, pneumonia, and, worse of all, a sudden drop in my blood pressure, which will then have <i>dire consequences</i> on my PAH, which will result in death.</li>
<li>Yes. FL has a much shorter waiting time than NY does. I need to contact the University of Miami, however, I would be required to live there for about 1-2 months, since the time it takes from when I get a phone call for a cadaver liver, I would need to be there in no more than 4 hours. Insufficient time to jump on a plane and fly to Miami from NY. I also need to ask them how long the wait time is for someone with a MELD score of 22 (my current MELD score was so low, it was like an 8, but due to the extenuating circumstances of the PAH, it's now increased from 8 to 22 and will continue to increase by 3 points every 3 months, but I would be required to have a heart catheterization <i>every three fucken months!!!</i> That's simply crazy! I've had 2 heart catheterizations in my life, and even with all the Fentonyl and Morphine that they give you, it's still hell!) NY Medicaid should cover all of this, it would be unnecessary for me to get FL medicaid, however, I would need to live in FL for the wait time that it would take for someone with a MELD of 22 (I think it would make more sense to get another heart catheterization in late April, so that I can go to FL with a MELD score of 25, which will make my wait time shorter) to get a liver transplant, which could be a month, or it could be more. I would also probably need to stay there for a little longer after I was to get my transplant, but can then come back home to NY and continue my post transplant care at Mount Sinai. I think this is a <i>very </i>difficult decision to make, however, because I won't have any of my family there with me when I go into a surgery that I may not wake up from. So, needless to say, that would be very hard.</li>
<li>NY Wait time, even being a priority, and this is if my MELD remains at 22 (which I will probably 'bend-over' and get the heart catheterization to show that my PAH is still normal, like it is now. If it was to show up abnormal, then I would be off the list, have to go back through all the BS with the Pulmonologist & Cardiologist to have my PAH under control again, so that I can, once again, be medically cleared for surgery. There's simply no possibility that they will perform the surgery if my PAH is not stable, since I will die due to cardiac arrest during the surgery.</li>
<li>For living donors, to find out if they're potential candidates (and all of this is in the link on the right side of this page, titled 'What Every Living Donor Needs to Know!'), they must have a blood type of O or A (+/- doesn't matter) and it's just a question of being in the physical condition to have an operation after that. The screening process is 2 days, that consists of vigorous testing (MRI's, CAT Scans, Blood work, etc.) and if shown to be a match, then there is no 'wait time' and a surgery date will be set. There's a telephone number for the transplant coordinator that would set all of this up, that is, if anybody is willing to undergo the risks involved in saving my life.</li>
<li>No.</li>
<li>My life expectancy is not in jeopardy from the liver disease. However, it's the PAH that will cause an early demise. If I choose not to get a liver transplant, then the odds of me living to see the age of 50 yrs old are less than 20%. Those who've had a liver transplant, and PAH, in one year, it goes away. This happens to 4 out of every 5 people who have cirrhosis and PAH.</li>
<li>9-12 months, if my MELD doesn't go up and stays at it's current 22. However, I believe that I will get more heart catheterizations so it can at least go up to the high 20's, but I can only get a heart catheterization every 3 months...no sooner! The 9-12 months can turn into more like 8 months if I get another heart catheterization or 2.</li>
<li>Yes. It would be a full liver, not half, and it wouldn't change the wait time.</li>
<li>My insurance should cover a home attendant, however, if they don't, then I will have to use my NFT Fundraising money to have a home health aid for about a month post-transplant.</li>
<li>Yes, getting on an Anti-Depressent is not a bad idea. Just not Cymbalta since it's very damaging on the liver, which a lot of medication is)</li>
</ol>This was, to say the very least, <i style="font-weight: bold;">a lot</i> of information to digest in one sitting, let alone one day!! I really don't know what's the best 'course of action'. It's very sad that things are turning out this way, but I can't sit here all day crying 'woe is me'...that's just not my style! But, I think if more people knew what it felt like to be in a position of having someone who can save your life, then it would be one heck of a shock to their system!<br />
<br />
Only those who've had to rely on others to give them the most precious gift of all...life, can truly know what it feels like to be in my shoes right now. Once you lose your health, nothing in the world can get it back, and you only have one chance at this life, and no amount of material possessions can buy you a new life, or buy you the health that you so desperately crave. It's really true. People have the power to help, but it's at a very high price, and I acknowledge that.<br />
<br />
Who knows? Perhaps someone will get screened, and I will get my transplant before I lose the medical clearance that I've been fighting for since February of last year. But if someone is going to 'step up' and be a living donor for me, then they must do so now. I'd hate to go through all of the things I've already been through by losing my medical clearance.<br />
<br />
I've also added a <i style="font-weight: bold;">very resourceful</i> link to what it entails to be a living liver donor, and how the generous gift of donation can effect someone's life. Please <a href="http://livermd.org/living_donor.html" target="_blank">Click Here</a> to read more.<br />
<br />
Well, I'm getting mighty tired now, and this whole ordeal has totally worn me out! Till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-51864772943777767942012-01-27T06:44:00.000-08:002012-01-27T06:44:01.988-08:00Starting the Chapter...First off, I'd like to say to all out there, I've hope you had a wonderful holiday, and may this New Year be a great one for you, as well!<br />
<br />
So, the 'Jitters' are really starting to affect me now...it's no longer a fictional (not that it ever was fictional, but perhaps, now, it's feeling a lot more real..hard to explain) event, but it's actually <i>going to happen</i> this year, and I speak of my liver transplant.<br />
<br />
Regardless of living donor's, or lack thereof, I will have my liver transplant this year. As everyone knows, or if you don't know, now you do, I now have the medical clearance that I so desperately needed for my life-saving liver transplant. I have already seen the Cardiologist & Pulmonary Department at Mount Sinai Hospital, and I'm going to finally continue with the process of getting on the 'active' list on February 2nd. That's when I see my Liver specialist/transplant Dr.<br />
<br />
I must say so myself, that the last week has given me <i>lots</i> of perspective, not just with my health issues, but with other issues as well. I've been so absorbed in my health, that I've not been giving much thought to what life will be like after my transplant. I guess, in simple terms, I still haven't decided what I want to be when I grow up! lol! I think that I've came to two decisions as far as that goes that a) I wish to travel the world and see more of other ways of life and b) I wish to study more...and not just for 'financial' gain, but just for the gain of enlightening my mind.<br />
<br />
I'm going on a cruise this May, on a better note, to the Caribbean via Carnival Cruise, for 4 days of some <i>much needed</i> R&R. I'll be leaving at the port of Miami, returning at same location, to a private island that is owned by a band that I have highly admired throughout my life, 311. I've never seen them play live, and they will be performing 4 shows during the Cruise and I will also get a photograph with the band, as well. <br />
<br />
So, back to the topic of this particular blog, regardless of living donor situation, which may still work out, after all, if I've learned <i>anything</i> from all of this, I've rekindled my religious beliefs that I've abandoned for many years, that the Lord works in mysterious ways, and if it's meant to be that I must wait for a cadaver donor, then so be it! My health is what's most important here, and in many ways, I don't wish to jeopardize <i>anybody's </i>life, even if they have the most honorable intentions. I just don't think that it'll work out and I certainly can't use coercion or 'emotional blackmail' to have someone do something that they simply don't wish to do. I should've really taken more consideration about that, and for that, I'm deeply regretful. Even though my Dr has told me that a living donor would be an ideal situation for me, I think this is my hole, so to speak, and I've dug it and I'm not expecting anyone to dig a hole for themselves in helping me get out of mine.<br />
<br />
The Dr says the my Cirrhosis is Cryptogenic, which, doesn't actually mean 'unknown' Cirrhosis, because that would be more like Idiopathic Cirrhosis, but it means that I have Cirrhosis and there is a cause for it, but that cause cannot be verified. However, I'm pretty sure how my liver damage has occurred, as is my Dr, I'm pretty certain, which is due to my past substance abuse problems. All of that is irrelevant, however, because the simple fact is that I have Cirrhosis, it's here, regardless of the source, and I'm in need of a liver transplant due to this.<br />
<br />
So, I will close here by saying that I will keep all informed as to what happens after February 2nd. Thanks for reading, as always! Till next time...Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-983796520131575676.post-29676706530033388402011-12-16T11:52:00.000-08:002011-12-16T11:52:52.884-08:00A bittersweet victory...Well,I got my heart catheterization on Wednesday, and after 9 months of waiting...I finally got the medical clearance that I've been waiting so long for & thought I would never get. I'm now on the active list, and can proceed with getting the necessary steps taken to get my life-saving Liver transplant. <br />
This may be a bittersweet victory for me. I'm uncertain if I now have any living donors to be screened & I hope I do. If I don't, then I will be waiting for another 9-12 months for a cadaver donor, which feels like a lifetime away. It may also be a death sentence. I don't know if my body can continue functioning for that long...and with all of the pain I'm already in...9-12 months more will be a God-awful nightmare. This means a year of going to the emergency room...getting more taps (paracentesis) done, possibly falling into comas, just to be brought out of them and sent home...I just don't think that I can take that.<br />
<br />
I really do understand that it's a HUGE order to ask of anyone, especially since everyone is out for themselves...and if the shoe was on the other foot,I don't think I'd be volunteering to undergo an extremely invasive surgery for my family, but I can't help but be a little angry, well...not angry, but disappointed & depressed. It makes me feel like no one values my life. I was expecting this to happen & I tried to prepare for the worse, but now that I've FINALLY crossed this barrier that has been keeping progress from moving forward, I thought it would all be easy from now on.<br />
<br />
I just feel like I have such a large family & assumed that someone would step up & wish to do this for me. I feel foolish in making that assumption. <br />
<br />
Since I've started this blog, I've meet so many people that have had transplants, and have had successful living donor liver transplants, from family members that took that courageous, selfless, act to help their loved one, and I was pretty confident that someone would step up for me.<br />
<br />
Perhaps I'm making unsubstantiated assumptions, I don't know, but it feels like a very hallow victory. Call me a pessimist, but I just don't think that anyone will wish to be screened for my living donor, or may get screened and then decide that the risks are way to high for them to consider. And the risks are high. I'm not minimizing it in any way, I know this is asking for something that most people would not want to give, even if it meant the suffering and death of a family member. The screening process is a vigorous one. The living donor will be assigned a 'counselor/advocate' who's job is to make sure that this person is not being coerced in any way, shape or form. In fact, I'd even go as far to say that this 'advocates' job is to discourage the person from donating, in a way. If the slightest hesitance is shown, then the plug would immediately be pulled, and this 'advocate' would not let the screening go any further.<br />
<br />
This isn't something that I can ask someone to do. This is something that someone WANTS to do, is volunteering to do. Even though I feel like someone should be volunteering to do this, I cannot expect anything from anyone. Not unless they're whole-heartily volunteering to do this, because it's, what they feel, the 'right' thing to do.<br />
<br />
I guess only time will tell at this point. They're other factors to be weighed in, as well. Does the living donor have the 6 weeks to take off of work without getting fired? Do they have children that will worry about them, and who need them? Are they healthy enough to undergo a surgery of this magnitude? Are they what's considered a 'high-risk' donor, due to medical conditions, and if so, is it in my best interest to live with whatever health issues that they will pass on to me?<br />
<br />
So many questions...so much 'red-tape', yet so little time. It's extremely discouraging, and it's also very depressing. It really makes me realize how alone I am in this world. I'm not saying that I don't have anyone who cares for me, or that people don't care for me because they're not willing to do this...but, nonetheless, it's depressing.<br />
<br />
So, I will see my Pulmonologist/Cardiologist on Monday, and all paperwork will go to my Liver Dr, and I will have to see him to plan the next stages of this journey...perhaps the final stages of this journey, perhaps the beginning, I don't know yet. Time will tell. Till next time...Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-983796520131575676.post-43051136112135852032011-12-06T08:09:00.000-08:002011-12-06T08:09:44.626-08:00Taking a Second Shot...<a class="twitter-share-button" data-count="horizontal" data-via="natwillsbrg" href="http://twitter.com/share">Tweet</a><script src="http://platform.twitter.com/widgets.js" type="text/javascript">
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I'm having my right side heart catheterization, again, at the middle of this month (the Dr has yet to given me a date, although she said it would be the middle of December, probably near Christmas) to determine if I am medically cleared for surgery...or not.<br />
<br />
I've been in this position once before, 3 months ago, and was sorely disappointed when I did not get the medical clearance, however, I feel this time may be different. My Dr. has not discussed putting me on more medication, and has not even discussed what would happen if I don't get medical clearance. I sure hope I do. I've been experiencing horrific pains, and they're more constant than ever. I sometimes feel like they're just letting me die...and if they are, why prolong the process and make me suffer unnecessarily? These pains are so bad, even with the Percocet that the Dr prescribed for me, it does nothing. I feel completely and utterly useless. Like I serve no purpose other than to take up space and breathe air. These pains come so frequent and hard, that I can't even leave my house without the fear that I'll be forced to stop in the middle of what I'm doing to take a car service home.<br />
<br />
Perhaps I should try to get out more often. I find when I'm outside and walking around, the pains usually don't come. It's when I'm immobile that the pain comes, and although when it comes it's completely debilitating, and my instincts are to just lie on the bed, in fetal position, until it subsides (which it takes sometimes hours for it to subside, and when you're pain level is past the point of tolerable, hours seem like lifetimes), but I discovered that by going against my instinct, and mustering all the energy that I have, standing up and walking around sometimes alleviates it. It's very weird, and I don't know if I'm explaining it all that clearly. But, that's about how it feels.<br />
<br />
I went to the Emergency Room at Mount Sinai a few weeks ago. The stitches on my leg needed to be removed and the abscess needed to be cut open and drained, which, by the way, the Dr. did with no anesthesia whatsoever. It wasn't as painful as it sounds though. Once he removed the stitches, I could see that it wasn't fully healed, and my Dermatologist told me that it wouldn't heal, since it was still leaking with nasty fluid (mostly very light colored blood). But I was kind of surprised when the Dr at the ER pulled out a scalpel and did a little cutting, to get it more open. He was pushing it so hard, and it was just oozing out, I knew what was going to happen, as I'm sure he did, as well. I could still feel a very hard ball underneath, which was what needed to be drained, and sure enough, he kept pressing and it just squirted out like a fountain.<br />
<br />
<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIhz5l7cELOz-pnDQWDiK9rVISGnXwjJX5hGJECv5JAMfBkFziTgD8_YvXbf3Kno7e3zFU9sOFJRcZqbn2DWp9S4qsX8Q4S40coLC3ycW-q8qxnP1oYzIpK9w3XX1ozoxwf2Ka1GjuvaI/s1600/IMG107.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" dda="true" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIhz5l7cELOz-pnDQWDiK9rVISGnXwjJX5hGJECv5JAMfBkFziTgD8_YvXbf3Kno7e3zFU9sOFJRcZqbn2DWp9S4qsX8Q4S40coLC3ycW-q8qxnP1oYzIpK9w3XX1ozoxwf2Ka1GjuvaI/s200/IMG107.jpg" width="150" /></a></div>They did a culture on what it was, and it was determined to be infected, so about 1-2 days after I went to the ER, I was given an antibiotic called Bactrim, and I've never had any allergic reactions to any medications before, but this appeared on my arm (the red bumps in the picture) and my skin was very itchy and felt prickly. The Dermatologist was convinced that this was an allergic reaction and suggested that I stop taking the antibiotic, Bactrim, immediately. So I did, but I wasn't put on another antibiotic, and my body's White Blood Cells are too low to fight off this infection on it's own, and it's not healing properly, it's still oozing.<br />
<br />
So, I've yet to have the date for the right sided catheterization, but, I do have faith that I will get the medical clearance that I need for surgery, and once I get the medical clearance, then living donors can get screened, and if found to be a match, a surgery date can be set. I'm still a long ways from that happening, but once it starts to happen, at least I know that the 'gears are grinding', so to speak, because I feel like my treatment has come to a complete stand-still and while the Pulmonary Hypertension Unit is trying to 'stabilize' my PAH, my liver and spleen are deteriorating at a rapid rate. Soon, I hope, I can finally start my life-long journey to recovery. I will post once I get my heart catheterization...wish me luck! Till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-50419360375831028932011-11-16T06:48:00.000-08:002011-11-16T06:48:21.024-08:00Holding my breath...<a class="twitter-share-button" data-count="horizontal" data-via="natwillsbrg" href="http://twitter.com/share">Tweet</a><script src="http://platform.twitter.com/widgets.js" type="text/javascript">
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I haven't written in awhile and that's because there's really not much to tell. However, there are a few things that I would like to say first off.<br />
I would like to personally thank <i>everyone</i> who has donated their time, money and prayers with me this last few months, I really appreciate it.<br />
I've had a bit of a shock this last week. I had a 'tumor' on my leg, 3 doctor's told me that it was benign, and I was referred to see a dermatologist, which I saw this past Friday. Even the dermatologist, at a glance, said that it was a tumor. It was a marble sized ball in my thigh, on the top part of my leg. It felt like one of those little rubber balls that come out of the quarter machines, with toys/candy for kids. So, he said it needed to be biopsied. I thought he was going to schedule a biopsy, but to my surprise, he did it right then and there. So I was prepped up, and he stuck this large round lancet-like device into the tumor and said "wait a minute...". I was sitting back, so I propped up to see what was going on and to my surprise, it was oozing with this white mucus! The Dr squeezed it out, swabbed it to get a sample, looked up at me in astonishment and said "It's gone!". I now have two stitches in my leg, and have yet to find out what it was. It didn't hurt, or anything like that, it was just there. It started growing like 9 months ago, and it stopped growing when it got marble sized, perhaps a bit bigger and then started to harden. Never did the spot feel infected or irritated in any way. That's pretty odd.<br />
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As far as my liver Dr. goes, there's no news to tell there, and it's pretty damned frustrating! I'm still waiting for medical clearance, and my Pulmonologist/Cardiologist had told me that I was to get another Right Heart Catheterization in December, yet no one has called me to make an appointment for the procedure. This is so stupid and such a waste of time, because they're so focused on treating something that I don't even feel. I must admit, my ability to climb stairs and walk has gotten better, as far as my breathing goes, but my spleen/liver has gotten much worse.<br />
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I'm pretty much living off Aleve, because I've been getting these pains delivered from the devil himself in my left side, and it makes me nauseas. If I take Aleve, it pretty much subsides and I have to take 2-3 a day. I can't live like this! What if I don't get medical clearance next month? I don't have time for the PAH Dr. to tinker with my medication and sit back and wait to see if it 'gets better'. I <i>know</i> it's gotten better because I can feel a great difference, so I will be rather shocked to find out that I still am not medically cleared for surgery.<br />
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I feel like everything has come to a grinding halt. My liver Dr. was told, by me, of the pains that I've been getting and he said "The PAH medication can enlarge the spleen". I'm like "My spleen was <i>already</i> huge by the time I came to him, and what's going to happen is my spleen will rupture, and then what? They'd have to put me to sleep to remove my spleen, and if that's the case, then why am I not (by what the PAH Dr. says, who I haven't seen in months) medically cleared for my liver transplant? Shall we sit back and wait for the PAH Dr. to tinker with my medication at my expense? What if my liver/spleen get so bad that I have to be hospitalized? Or fall into a coma? Will I just die if I don't get this 'medical clearance'?" Shouldn't it be <i>my</i> decision to go under surgery, regardless of the risks? The way I feel, is that the risks of things going bad are already there. If the risk is 5% greater of me not making it, then that should be a risk that I should be willing to take. It should be my decision to go through the surgery, not my Dr.'s. <br />
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It's just so frustrating because these Dr's don't care about my 'well-being'. They don't care if I suffer, and go through hell and back. Heck, they don't even care if I get a liver transplant or not! It's all about milking my insurance for as much money as they can get, and having someone die during surgery is something that a surgeon doesn't want to have on his record. The better success rate a surgeon has, the more highly recommended he becomes, the more he's recommended, the more money he makes. It all boils down to the same thing: money.<br />
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Well, I don't care about money, or the integrity of any Dr's. I care about getting my liver transplant and I'm going to start to put everyone on the hot-seat with me! It's so crazy that I have to corner my Dr's to do the right thing!<br />
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I'm just not seeing the light at the end of this tunnel, it's like "Yeah, my imaginary liver transplant". I can't even get on the damned list until I get medical clearance, and then what? I wait on the list for 2 years? Or possibly have friends/family members screened as potential donors? That's all I really want, because I pretty much already know that the liver I get will not come from a cadaver, but from a living donor. I'm not going to wait and possibly die on a 'waiting list' for a liver when I have so much family and people who are willing to be tested as a donor. <br />
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Wish everyone a Happy Thanksgiving, I'm going to my sisters house, unfortunately, my son will not be there with me, he's going with daddy to Maryland for the holiday. Till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-49961440002160080192011-10-21T06:54:00.000-07:002011-10-21T06:54:51.604-07:00What a bummer...<a class="twitter-share-button" data-count="horizontal" data-via="natwillsbrg" href="http://twitter.com/share">Tweet</a><script src="http://platform.twitter.com/widgets.js" type="text/javascript">
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The MRCP was done, and I do <strong>not</strong> have PSC, and in a way, I'm really pissed about that, but another part of me is relieved. It's hard to explain. I'd have to say that I'm more pissed than relieved, though. I'm tired of not knowing what I have, and how my liver became so messed up.<br />
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My Dr. said "20% of their patients have unknown cirrhosis, and it's as frustrating to them as it is to me". YEAH RIGHT! I highly doubt that. I've subjected myself to <em>countless</em> MRI's, CAT Scans, an Endoscopy, a liver biopsy, blood work monthly, and we<em> still don't know!?</em> I'm willing to continue with the 'process of elimination'. I've already been through all of these test, what's a few more? We know what it's <em>not</em>, it's not Alcoholic, Hepatic, Billirubin, Auto-Immune, and now PSC, so let's keep going. If we keep excluding the types of cirrhosis, whatever is left <em>must</em> be the cause. Let's start thinking <em>outside</em> the box. Let's not exclude things just because it happens mostly to males, or those over 40, cause chances are, it's probably something so rare, that my Dr. isn't even considering it as the cause for my cirrhosis.<br />
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On another subject, my fundraising is going <em>very</em> well, and for all those who don't know, I'm fundraising with NFT (National Foundation for Transplants) and the link can be seen <a href="http://www.transplants.org/donate/victoriasantiago">here</a>. I've already raised a nice amount, but nowhere near what needs to be raised, if I'm to have a successful liver transplant.<br />
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<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheKNTiZ32QmyzSdMD0En2XfP-SF_cA_VchHyJA3B1GM4fqXfaOBB7SsRAZS3BHDIX0XE37asyM6MwBdukOTzTKMs5XFnhUV9Go9SiSDPXqVQMVWHsZETKVKgeCm_A5FDVBKfFlrj7_8Gw/s1600/featherex.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" rda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEheKNTiZ32QmyzSdMD0En2XfP-SF_cA_VchHyJA3B1GM4fqXfaOBB7SsRAZS3BHDIX0XE37asyM6MwBdukOTzTKMs5XFnhUV9Go9SiSDPXqVQMVWHsZETKVKgeCm_A5FDVBKfFlrj7_8Gw/s200/featherex.jpg" width="200" /></a></div><br />
<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTdUEq5RI6v5u6S-RBIP9KIRVAOthqludOzA2fNQq611N5ZhQTc2SEM9Gs4pC2qDnHdeh8wNtyCxWWIHBU5bwkBHInRIewADrg_W9VM2Rfc-8IuvbiPdqHBoFOIUR5mboNoDE77Y-55lg/s1600/featherex2.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" rda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTdUEq5RI6v5u6S-RBIP9KIRVAOthqludOzA2fNQq611N5ZhQTc2SEM9Gs4pC2qDnHdeh8wNtyCxWWIHBU5bwkBHInRIewADrg_W9VM2Rfc-8IuvbiPdqHBoFOIUR5mboNoDE77Y-55lg/s200/featherex2.jpg" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEO0Dpk_bOLY974ueht1if-jrM6WBXBDiZkcWE_a9Co4miVDpxG5aVuXW_8ip4fXnGSBoss-MLVGKNZWWKvQ7y5pSZGjkCa7Ij7tzcqn670_rUdXyohFO941GLAdpv5Ggedhvr4WZSJkM/s1600/featherex1.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" rda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEO0Dpk_bOLY974ueht1if-jrM6WBXBDiZkcWE_a9Co4miVDpxG5aVuXW_8ip4fXnGSBoss-MLVGKNZWWKvQ7y5pSZGjkCa7Ij7tzcqn670_rUdXyohFO941GLAdpv5Ggedhvr4WZSJkM/s200/featherex1.jpg" width="200" /></a></div>I'm selling feather extensions (as seen on the left) for $5. I have two different kinds, as you can see. One set is 16 inches long, the other's are 5-8 inches long, and if you live in Brooklyn, NY, I can put it on you very easily, if you don't live nearby, I can ship them to you anywhere you are (please let me know location, and I will tell you how much the S&H will be). I should have them in my possession in 2 weeks. You can send me an email on which one you would like, which color you would like from the selection in the pictures, donate $5 per extension (if being shipped, contact me first, so I can determine the total of your order, go to the NFT donation website <a href="http://www.transplants.org/donate/victoriasantiago">here</a> and put in the comment 'Feather Extensions', make sure that the donation is "In Honor of Victoira Santiago", I will be notified that the donation has been made and will ship them out. I will start taking orders once they arrive, which should be soon, which I will put on my Fundraising site, which is <a href="http://www.victoriasfundraisingcommittee.blogspot.com/">here</a>.<br />
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So, that wraps it up for now, for all those out there, if you haven't sent any appeal letters, or shown the fundraising site to others, please do as soon as possible. The web address is: <a href="http://www.transplants.org/donate/victoriasantiago">www.transplants.org/donate/victoriasantiago</a> <br />
Ok, till next time....Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-56548748559847249482011-10-12T06:26:00.000-07:002011-10-12T06:26:33.573-07:00My Cirrhosis may have a name...<a class="twitter-share-button" data-count="horizontal" data-via="natwillsbrg" href="http://twitter.com/share">Tweet</a><script src="http://platform.twitter.com/widgets.js" type="text/javascript">
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I've sent an email to my Dr. and asked him if he's had a chance to look at the liver biopsy samples that were sent over from Beth Israel about a month ago. He said he's looked at them and I may have PSC. I immediately Googled PSC, which stands for Primary Sclerosing Cholangitis.<br />
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It's a <i>very rare</i> disorder that damages and blocks the bile ducts inside, as well as outside the liver. The symptoms vary, and it can progress slowly, or quickly. To read more about PSC, <a href="http://digestive.niddk.nih.gov/ddiseases/pubs/primarysclerosingcholangitis/">click here</a>. Only 7 in 100,000 American's get this disorder, and 70% of the 'lucky' 7 are male and over 40 years old. Just my luck! The odds of me, a 30 year old female, to have this, are about 0.6 in 100,000 people in the US. <br />
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Somehow, I knew when my Cirrhosis would be diagnosed, is would be some rare type, but then again, my Dr. said 'I might' have this. I asked him, "What do you mean I might? Either I have it or not. And I, for one, would like to <i>finally</i> know what's wrong with me and what caused my Cirrhosis." He replied "It's more important to focus on your PAH right now". I disagree. Well, I don't disagree, but the fact it, I'm already doing <i>all I can do</i> to help lower the PAH levels right now. I'm taking my medication, and in December, I'm going to have the 3 tests that I've had done last month done again, possibly a heart catheterization, which I'm not happy about at all, and find out if the pressure is <i>finally</i> within tolerable levels so I can get the medical clearance I so desperately need to get my liver transplant.<br />
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<span class="Apple-style-span">But in the meantime, there are ways to properly diagnose what I have wrong with me, such as an ERCP, or MRCP, which will let the Dr know if this is what I have, or if I don't have this PSC. The MRCP is a less invasive test, and I think in the meantime, from now until December, I can get this MRCP test done to confirm this PSC diagnosis. If need be, I've had an Endoscopy before, but an ERCP is not a 'regular' endoscopy, it's where a special dye is inserted into the duodenum, which is past the stomach, so the bile ducts can be viewed easily. An MRCP is basically a special kind of MRI where it can obtain pictures of the bile ducts, and it's non-invasive, and accurate, so more Dr.'s are using this method to diagnose PSC.</span><br />
<span class="Apple-style-span"><br />
</span><br />
I'm going for an MRI on October 13th, since I need to get an MRI every 6 months (or 3 months? I'm not entirely sure) to check the status of my liver. I would like it if my Dr also orders an MRCP, as well as the standard MRI, which I have to take anyway. I just want to know what is causing my Cirrhosis. The last thing I need is to wake up from surgery, when I get my liver transplant, and being told 'Oh, you had such & such disorder, as it turns out'. Point being, is I don't need any 'surprises' when I awake from surgery. I'd like to know what's ailing me <i>now!</i> The liver biopsy should have been able to tell the Dr's that, which, it apparently didn't. So the question still remains, what kind of Cirrhosis do I have? Did my Dr just take a 'quick peek' in the microscope at my 2009 liver biopsy results and say "Oh, I think it's this". If that was the extent of tests he was going to run on my biopsy samples, then why did he hassle me to get the slides from Beth Israel over to him? And he's not even going to check to see what I have? Or if he has an idea on what I may have, he's not going to confirm it? That makes absolutely <i>no sense!</i><br />
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On another topic, my family and friends have <i>really</i> come together and are helping me with my fundraising, which I thank you all very much! For those who don't know about my fundraising, please <a href="http://www.transplants.org/donate/victoriasantiago">click here</a><br />
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So, that's all for now. Just to mention quickly, I had to go to the Emergency Room twice, first time for my feet & ankles that were <i>very</i> swollen, as was my belly, when the Dr's saw me, they said that I would definitely need a paracentesis, which is a draining of the fluid trapped in pockets in my abdomen. Turns out, there was no fluid in my abdomen! The head Dr. of the ER had <i>another</i> Dr. come to verify in the ultrasound that there were no pockets of fluid, meaning, basically, all of my <i>huge abdomen</i> was all Spleen and Liver!! It was unbelievable to see how large my spleen was, it started right underneath my breast, and shot straight out into a rock-hard bulbous balloon that ended at the beginning of my groin. That's insane! Your spleen shouldn't even be outside of your ribs, and not only is my spleen outside of my ribs, it's taking up pretty much all of my abdomen. This is, yet another problem, that the Dr's aren't doing anything to fix. The Dr. actually described my spleen as 'popable'! Is that a 'medical term'? Jeez...popable, meaning that if I get one whack to my tummy, it's all over, my spleen will rupture & I may die if I don't get immediate surgery to either stitch it back up, or remove it completely.<br />
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The only reason they are not removing it now, is because after the liver transplant, in time, it will go down and back to it's normal state. Your spleen isn't like your appendix, a non-vital organ, your spleen is what makes white blood cells (which is why my WBC's are so low, since they're all trapped in my huge spleen, which can't be drained of all the accumulated blood in it, since it's not in 'pockets' of blood, it's tissue), and if you don't have your spleen, your body isn't making WBC's, which is what fights off infection, and even me, with my WBC's so low, something as simple as the common cold can, in time, kill me. Any virus can run rampant and infect me to the point of death since my body has insufficient WBC's to fight infection.<br />
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The other time I went to the ER, was because of my teeth. I woke up, and my pajama was soaked in blood, and it was coming from my gums, when I looked in the mirror, I saw it was coming from a particular area, and that area was a deep red color, I thought it was infected. Turns out, it wasn't, and they were going to do a platelet transfusion if my platelets were low and getting lower, but, as luck would finally have it, they raised from 40 to 67. I was trying to think what made my platelets go up so much higher (which is great) than before. The only thing I can think of, is now that I'm wearing the Nicotine Patch & haven't been smoking for 3 1/2 weeks now, I've been eating green, seedless grapes like they're going out of style! I mean, like a crateful a day! I guess it's my substitute for smoking, but I just love them. Perhaps their giving me the platelets that my body needs. Who knows? It can't hurt to eat a lot of grapes, though.<br />
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Ok, I will keep in touch, as usual. Till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-16037828370431980002011-09-19T06:23:00.000-07:002011-09-19T06:23:31.356-07:00And the Fundraising Begins...<a class="twitter-share-button" data-count="horizontal" data-via="natwillsbrg" href="http://twitter.com/share">Tweet</a><script src="http://platform.twitter.com/widgets.js" type="text/javascript">
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I've added a new link on the right side of this page, I'm now a patient of National Foundation for Transplants (NFT) and you can make a tax-deductible donation in my honor by clicking <a href="http://www.transplants.org/donate/victoriasantiago">here</a>. When you click to donate, please be sure to put that your donation is <i>in Honor of Victoria Santiago</i>.<br />
If you don't put that, it will go to the general cause of NFT. I've also been recruiting volunteers.<br />
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It's <i>very vital</i> to the fundraiser that I have volunteers to help me, weather it be people who can donate an hour of their time, donate items, or any services that you can offer (i.e. babysitting, haircuts, baked goods, items you wish to get rid of that can be auctioned off, etc.)<br />
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Now, in order to be a volunteer, I need to put you down as one. For this, I need your full name, address (where you get mail), phone number, and email address.<br />
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I'm going to give a short description of what volunteering entails (all don't apply, even if you can do one of these, it would be <i>much appreciated!</i>):<br />
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<ul><li>Contact local (and national) people you may know (friends/family) who might help with donations, volunteering time or sponsoring events</li>
<li>Participate in local events that have/are being(been) planned</li>
<li>Collect donations at booths at events, put canisters by cash registers at local stores (materials will be provided to you) & collect funds to be handed in at the next Committee Meeting</li>
<li>Contact local businesses for donations of products/services to use at an event (auction &/or raffle)</li>
<li>Contact local civic organizations and ask for volunteers to help (methods of approaching organizations & businesses will be discussed at Committee meetings, as well as all proper forms)</li>
<li>There will be 'brainstorming sessions' at Committee meetings and all ideas are welcomed/needed!</li>
<li>Committee meetings will be held 2x per month, for 1 hour, on a weekend in the evening, so more can attend (I will not have Committee meetings interfere w/work schedules & make them at appropriate times when everyone will have an hour to spare</li>
</ul>These are just a few things that a Volunteer can do. I am <i>very </i>considerate to everyones hectic life, and I <i>don't </i>wish to interfere with it. However, this Fundraiser is a <i>necessity</i> for my survival. Life after transplantation is <i>not easy</i>. There's <i>lots</i> of medications that I will need to take for the rest of my life, and I'm not certain that my insurance will cover all of this.<br />
Also, all funds that are donated go to NFT, and NFT regulates what can be reimbursed, and what cannot be reimbursed. For example, I just put in for reimbursement for a blood pressure monitor that my PAH Dr. told me to get. That will be approved by NFT. If I wanted to buy new clothing, or pay my phone or cable bill, these will <i style="font-weight: bold;">not</i> be reimbursed to me from the funds that NFT has in my honor. <i>Only medical expenses, and expenses related to my transplant will be reimbursed to me</i>. So anyone who wishes to make a donation, be assured that this money <i>is</i> going towards medical expenses.<br />
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Committee meetings <i>are</i> essential to keep the Fundraising efforts running smoothly, and to ensure that efforts are being made towards the cause.<br />
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If there's any students who wish to become a volunteer, since NFT is a 503 (c) charity organization, it can be put towards any school requirements of volunteering.<br />
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Also, Volunteering is a <i>great</i> thing to add to your resume. Companies are impressed to see that you have volunteered your time for a <i>very worthy</i> cause.<br />
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I have <i>much more</i> information on volunteering, and, as most of you may already know, I'm planning a Fundraiser in Central Park which will be a 'Movie Night'. I'm <i>very grateful</i> for those who have agreed to help with this particular event, however, to keep the Fundraising Committee together and aware of what is going on 'as a group', is vital in order to help with <i>any</i> particular event(s). <br />
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If you wish for more information on volunteering, please send me a message. It doesn't matter what state/country you live in, <i>anyone</i> can volunteer by helping with fundraising efforts, and documents can be emailed to those who live outside of NYC. <i>Anyone</i> who wishes to help me in my fundraising efforts are welcome!<br />
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Thank you <i>very very</i> much for all of your help and time. I look forward to having <i>you</i> as a part of the fundraising committee! Have a blessed day!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-88468474497670447932011-09-15T07:11:00.000-07:002011-09-16T04:41:44.362-07:00Skeletons in the Closet...<a class="twitter-share-button" data-count="horizontal" data-via="natwillsbrg" href="http://twitter.com/share">Tweet</a><script src="http://platform.twitter.com/widgets.js" type="text/javascript">
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I quit smoking yesterday, it was something that had to be done, and it may have been the reason that I didn't get medical clearance last month. Any disease/disorder that can result in the need for a lung transplant, smoking <i>definitely</i> isn't helping it get better, regardless of the medication.<br />
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Since I'm on this new <a href="http://letairis.com/patients/pah.asp">Letairis to help my PAH</a>, and it's side effects are <i>so awful</i>, it'd be pretty pointless to continue to smoke cigarettes and take this medication, as well.<br />
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Well, the Edema (swelling/water in my feet) was actually <i>coming out of the pores of my foot</i> yesterday! I didn't even know that could happen. Everyone told me to keep my feet elevated, and I, stubbornly, finally heeded to their advice last night, and to my surprise, woke up today and they're about 75% less swollen than they were! So I'm <i>definitely</i> going to keep my feet up! It's not the most comfortable position, but it works. When I first elevated my feet, I felt a tingling sensation coming up my legs (possibly the fluid moving up my leg?) and I guess, once it got high enough into my abdomen area, it could then be processed by my kidneys (since I'm on large doses of diuretics aka water pills) and I can urinate it out, which, this morning, after sleeping with my feet up all night, I went <i>a lot</i> this morning! So that's good!<br />
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So, I wanted some advice on all who are reading this, you can click the "comments" blue words at the end of this particular blog, and 'Post a Comment'. I came upon a young woman on Face Book that published her own book. I've started to read it and it's <i>really</i> an amazing story! Many people have told me that I should write a book, since I've conquered <i>so many things </i>and have came out alive on the other side. This isn't solely about my liver disease, it's more of my teen years, and how everything spiraled out of control. Of course, I do want to mention where I'm at now, and I would almost be tempted to talk about a lot of those things here, but some of it is a little disturbing. Nevertheless, it's what's happened in my life. One main thing I would touch upon that I haven't touched upon here, is when I was raped. I've never really spoken about it, and after it happened (when I was 18), I did the right thing and testified against him in trial, and he was found guilty. His sentence was up to the judge and based upon his crimes (which can be seen <a href="http://nysdocslookup.docs.state.ny.us/GCA00P00/WIQ3/WINQ130">here</a> [last name: Samuels, first name: Craig]) the sentence could have been 7-25 years. He was sentenced to 20 years. <br />
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I see my life in chapters, just like a book, and certain 'chapters', I see it as other life-times that I just don't want to think about. However, <i>my</i> way of dealing with things for a long time was not to deal with them; it was much easier to stick a needle in my arm and forget. When you stop using heroin and get this flood of emotions, turmoil, and <i>everything</i> that's been suppressed over the years comes and smacks you in the face, it's too much to handle. Reality hits like a smack in the face and it becomes overwhelming. There's only so much that one person can take, and everyone has their 'breaking point' which I define as the point of no return. Just losing your mind and never coming out of it. I've heard of things that have happened to women, who are now permanent residents of a psychiatric ward. Their body functions, but when you look into their eyes, there's a vacant stare and <i>nothing</i> can be seen in them.<br />
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When your life is threatened by another person, it's an indescribable feeling. A lot of women who've been raped block out what's happened to them, but I remember everything. I don't know if that's due to me testifying at his trial, or having to repeat my story to the police, detectives and the District Attorney, or just because my memory is good. I even remember when it finished, and I was in his car, I yanked out my hair and tucked it between the seat, left a big hand print on the window, all in the hopes that if I was going to die, right now in this car, the police <i>will</i> find my DNA in this vehicle. My death will <i>not</i> go unavenged. <br />
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I also remember when he told me to get out of the car, that I was going to take down his license plate. I had no pen, & I frantically went through my purse, got out a lipstick and wrote his plate # down & kept repeating it in my head, like a mantra, AD8-66A, AD8-66A, over and over until I got to the pay phone and called 911. I also recall breaking down in the back seat of the police car. I was a complete mess, clothing ripped, hair all over the place. I heard the cops asking me "What was the model/make of the vehicle?" and I said it was a silver/grey older long car. I then hear 2 officers conversing and saying "What does the plate come back as?" (other cop) "It's coming up as a silver 1987 Grey Lincoln, registered to a Craig Samuels". <br />
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Craig Samuels. This was the first time I ever heard that name. The unspeakable evil now had a name. A name I would never forget, and a name that I wish I'd never heard.<br />
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At that moment, I knew that the police had him. I knew that he was stupid enough (or just assumed that I was stupid and wouldn't call the police on him, I don't know) to use his own vehicle & license plates. I went to the nearest hospital, was checked and had a 'rape kit' done (they scrape the bottom of your nails, have a piece of paper to collect whatever comes out), and I saw my mother. She was in tears, just seeing me in the state I was in, and she hugged me and we cried, together, in an over-crowded hospital Emergency Room.<br />
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In the following weeks, I was brought to a police station, and there was this female detective who had me view a line-up. Surprisingly, there was <i>another</i> woman in the car, who was viewing the line-up as well. We talked a little bit, and I asked her if she knew that this was the person who assaulted her. She didn't know it for a fact (didn't take down his license plate), but they brought her along to view the line up since the perpetrators MO (Modus Apperendi) was the same. It was a dark night (like something out of a bad Hollywood movie) and the conversation was minimal, however, she was confident that this would be the same man that assaulted her. We waited in the police station in a closed room. An officer opened the door. She went in first. When she came out, she was in tears, shaking her head and said he wasn't there. I really felt for her, however, at the same time, I was pretty confident that wasn't going to be my case, since I had more concrete evidence of this mans identity. I barely had to look for a second when I said "Number 2". I asked the officers if I was right, and they said I was. Then the detective spoke to me and told me "This man's been violently raping women since 1979, but the women he targets (street-walkers, drug addicts, etc) never show up to testify, or show up to testify while they're high, and he's found not-guilty. She told me he was laughing in the other room, thinking this is all a game, that I would not show up to testify, or I would change my mind to testify.<br />
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That wasn't the case.<br />
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If anything, that gave me even <i>more</i> fuel to nail this SOB to the wall to be certain that his 'reign of terror' ends <i>here and now!</i><br />
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By the time the trial came around, they had found <i>four other victims</i>, and he was being charged for 3 different rape cases, and, after that, he was to be tried for 2 other rape cases. By this time, (almost a year after the crime occurred) I was pregnant with my son, had a job and I dressed accordingly for court and told my story when the time came for me to testify. <br />
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I must have made an impressive witness, because my story <i>never changed</i> from when I called 911, till then. However, his story changed several times. First, he had no idea who I was. His DNA was extracted from me, and when faced with this, he said "She was a prostitute that I saw and paid her", then his story finally stood at "She was a prostitute and I didn't pay her"(like he thought that would matter, it only damaged <i>his</i> credibility, not mine).<br />
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Surprisingly, he was found guilty <i>on my case only,</i> and not guilty on the other two cases (which is strange, and I think the only logical explanation for that is (a) the two girls did not show up to testify, (b) were very high while testifying, or (c) lied about what they were doing on the streets in the first place, and changed their story, which doesn't help their credibility. I was honest from the start. Even though I was up to no good when this happened, that doesn't give <i>anyone</i> the right to do what he did.<br />
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I even showed up at sentencing, where I learned even <i>more</i> horrible things about this man, Craig Samuels. Things that, by law, couldn't be used to try him on the case (prior bad acts), but can be used as an aggravating factor for sentencing purposes. The DA said "This is a predator, a menace to society and his own family. He was charged with Attempted Murder when he beat his wife with a 2 by 4 piece of plywood with nails protruding from it, puncturing her lung, among other things, and sending her to the hospital for 3 months."<br />
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The Judge said that he cannot sentence him based on prior bad acts, and can only sentence him based on what he did to me. He said "Sentence for these crimes is 7 to 25 years. I hereby sentence you to 20 years", smacked his gavel and the prisoner (monster) was taken away.<br />
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He was supposed to have yet <em>another </em>trial, after being found guilty on my case, so he took a plea bargain with the district attorney and plead guilty to all 3 counts (well, 2 actually, not including mine) and was sentenced to 20 years, all to run concurrently (at the same time) and chose <em>not</em> to have another trial. Had he rolled the dice at another trial, he would still have to do the 20 years for my case, <em>and</em> any other charges found guilty on, the time would be done consecutively (one after the other), not concurrent.<br />
Strangely, I've been keeping tabs on him, and his prison record. I don't know why, I should just leave it alone, but curiosity, I guess, gets the better of me. I've seen that he's been transferred to <i>many</i> different facilities, and I recall calling one of these facilities asking about him. When the Correction Officer asked "Are you a family member?", I told him the truth, that I was the victim (I hate that word), and his lips sealed, but, he did tell me he was transferred because of all the 'write-ups' (bad things) that he had, and that he's had 2 1/2 years of good time taken away from him. So, even though I plan to record a video for his parole hearing, I'm pretty sure that he will be denied parole when it comes up in 5/08/17. It's a private hearing (unlike TV shows us, you cannot be physically at the parole hearing, however, the DA <i>can</i> either read a letter, or show a video tape of your feelings about him being paroled), so I will write the DA a letter to be read at his hearing, but it's just scary to know that this man <i>will</i> be free one day, and as much as I'd like to put it behind me, I can't. <br />
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I'm afraid that he will want to retaliate against me. Technology is a <i>great</i> thing, but in the wrong hands, it's something that can track me down, as if I have a GPS inside of me! I can't worry about that now, I have <i>much</i> more pressing issues <i>right now </i>with my health.<br />
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Alright, so I'm asking everyone or anyone who <i>has</i> published a book before, if it would be a good idea to write a book, or if you think it would be therapeutic, or if it will just remind me of things that I'm trying to forget. <br />
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Life is always a battlefield. Everyone has his/her own definition of what a 'crisis' or 'problem' is, and, I'm going to say it...but since I've been diagnosed with a life-threatening disease, I think that, as a whole, I've been though <i>so much more</i>, and it makes me <i>completely</i> insensitive to other's petty problems. <br />
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I guess I just always assume that my 'friends/family' would automatically be there for me, and be willing to help in any way, shape or form, but a family member of mine is <i>really</i> giving me a hard time. Claiming they're been 'reluctant to help me' cause of...... Reluctant to help me?? Is that serious?? Your my <b>family</b>, I shouldn't have to even be <i>asking</i> them for help, in times of crisis, all the BS gets set aside, and we stick together, like a family should!! I mean, what part of "I'M DYING" do they <i style="font-weight: bold;">not</i> understand? So yes, I may get a little bitter or angry when I have to ask my own flesh & blood to help me, their dying sister/cousin/aunt/niece, whatever! I feel that I have <i>a right</i> to be a little pissed off that I have to ask my family for help when they know darn well that I <i>need the help!</i><br />
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I've met some <i>awesome and amazing</i> people from all over the world through this site and Face Book, as well, and they're <i>total strangers</i> to me, and they're helping me more than my <i>own family</i> is! I'm very grateful for that, but I'm also a little depressed and disappointed that total strangers (who have now become good friends) are more willing to donate their time/effort for me, than my own family is! I shouldn't even have to <i>ask!</i> I should be <i>asked</i> if their is anything they can do to help me through this awful time.<br />
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Some people are so <i>self-centered & self-absorbed</i> with themselves, that they don't care about anyone else but themselves! I just can't see how people can stroll through life thinking that the world revolves around themselves, and have no heart towards <i>anybody</i> else's problems, including their own family & children.<br />
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Well, that's enough of that, and like the saying goes "When s**t hits the fan, you find out who you can really trust & rely on", or something like that! So, please leave comments, click on "Comments" right below these words, and another window will open and it will have space for you to "Post a Comment". Thanks for listening...Till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-30749457083662862632011-09-11T13:09:00.000-07:002011-09-11T13:09:50.105-07:00The Return of the Ascites...<a class="twitter-share-button" data-count="horizontal" data-via="natwillsbrg" href="http://twitter.com/share">Tweet</a><script src="http://platform.twitter.com/widgets.js" type="text/javascript">
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Well, this was to be expected, I guess. This medication, Letairis, is showing it's awful side effects and pretty quickly, too. My feet, ankles, toes, legs and belly are balloons, once more, except my diuretics have already been raised, so taking more of those won't help. Also, my tummy is exceptionally large, once again, so the water pills alone are not enough. This is also a side effect of the Letairis, which I can't just stop taking, since it's <em>crutial</em> for my medical clearance and helping my PAH. <br />
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So, I'm pretty much at a loss of what to do, but I'm also pretty sure what needs to happen. A paracentisis, which is also knows as a 'tap' where a needle is inserted into the abdomen and the fluid is drained out. I probably also need IV Lasix (one of the diuretics I take in pill form) to drain the fluid from my legs & feet areas. <br />
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Unfortunately, this is all inpatient stuff, so I'm going to pack a little bag with clothes/necessities and go to Mount Sinai's ER. I'd rather be admitted there, since they have all of my medical history there already, and it's a <em>much</em> better hospital than Woodhull, which is my local hospital. So, it looks like I'll be 'out of commission' for about 2-3 days, hopefully no more than that. Also, my Dr. will be able to visit me while I'm there, just to check in and see how I'm doing.<br />
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Well, that's about all for now. The weird thing is: I'm not afraid. My friends/family are freaking out WAY more than I am. I've spoken to <em>a lot</em> of post-liver transplant patients through TransplantBuddies and they've been hospitalized more times than they can remember! Having the taps done (one person had 7 liters of fluid drained from them, and another had 120LBS of fluid drained, isn't that <em>insane?!</em>) are part of the territory when it comes to liver disease, everyone who's a pre/post-liver transplant patient knows that! It's just something that happens, and it gets dealt with like anything else. So, I feel like to be nervous & complain about going to Mount Sinai is acting like a baby compared to others who've went through this before me!<br />
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You know, it's amazing to hear other's tragic stories on what they've went through, and came out <em>alive</em> and living their lives, and loving it! That's really been my inspiration lately, especially when I was feeling so tired of everything and all of this horrible (which is an understatement) news that I've had to deal with this last month, but hearing others who have already <em>went</em> through all of this, and are living life now, has really given me the strength and courage to push through! I'm even considering writing a book. Not just on all of my health problems, but of my <em>entire</em> life, things that I don't really talk about here, but have only touched on (such as being raped, living on the streets, selling myself to support an addiction, having overcome all of that and now, facing the ultimate test of faith, by having all of these health issues).<br />
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I've already got a <em>very full</em> plate, since I'm spearheading my Campaign for Fundraising (for more info, <a href="http://www.transplants.org/donate/victoriasantiago">click here</a>), and getting together as many volunteers as possible. It is recommended by NFT that I should designate a 'Chair Person' other than myself who can do all of this for me, but I really don't have anyone who will fight for this cause as much as I will. Everyone I know has jobs, so they're time's already limited, but, to my surprise, I'm actually <em>really good</em> at fundraising, and have came up with some great ideas and events. However, I will designate someone to be my Co-Chair person, so that when times like this, that I'm 'out of commission', my Co-Chair person can take over and make sure things in the Campaign are running smoothly.<br />
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Also, for those who wish to Volunteer, or would like more information on Volunteering for my NFT Campaign, please send me an email and I will send you all of the information you need. It's <em>crutial</em> that I get more Volunteers, regardless of what state/country you live in, you can Volunteer towards the Campaign, and, sadly, as of right now, including myself, I only have a lousy 9 Volunteers! So please send me an email on how you can help! <br />
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Thanks for listening, and wish me luck at Mount Sinai! Till next time...Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-66641403361759086242011-09-06T07:22:00.000-07:002011-09-06T07:23:19.408-07:00The Next Painful Months Ahead...<a class="twitter-share-button" data-count="horizontal" data-via="natwillsbrg" href="http://twitter.com/share">Tweet</a><script src="http://platform.twitter.com/widgets.js" type="text/javascript">
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So, I'd be lying if I said I wasn't scared out of my mind right now. This new medication that I'm on, Letairis (<a href="http://www.letairis.com/patients/about.asp">click here for more info</a>), has <em>a lot</em> of very bad side effects, especially towards the liver (<a href="http://www.letairis.com/patients/about_side_effects.asp">click here to see side effects of Letairis</a>).<br />
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This medication was more of a 'last resort' for me, which is why I was put on the Revatio in late March 2011, which is after I got the results from my Heart Catheterization. At the time, the Cardiology Dept. at Belleview Hospital thought it would be the best medication for me to take that does the least damage to the liver to treat my PAH. <br />
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Even though Letairis is damaging to the liver, it's the only medicaiton that is the 'least damaging' to the liver, however, it still puts a very bad strain on the liver, even for someone who doesn't have liver disease. There are different types of PAH. Their's Primary Pulmonary Arterial Hypertension (PPAH) and Secondary(aka Associated) Pulmonary Arterial Hypertention (SPAH/APAH), obviously, I have SPAH/APAH, and in each of these two types, their's what's called the WHO scale, which determines how severe the PAH is. It ranges from Class 1, being the least damaging, and Class 4, being the most damaged which includes; unable to perform any physical activity, feeling tired even while at rest/sleeping, shortness of breath even while sleeping and symptoms increase with almost any physical activity. (<a href="http://www.letairis.com/patients/pah.asp#types">Click here to read more about the WHO Class Scale</a>)<br />
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I have tried to educate myself as much as possible about PAH. However, it's just more bad news that I <em>really</em> don't need to hear, but in a way, it's best to know what's wrong with our bodies. In severe cased of PAH, a lung transplant may be necessary. However, and thankfully, I am not in a Class 4, I'm somewhere between Class 2&3. This is where Letairis comes in. It will help relax my Pulmonary Arteries so that the blood may flow more freely.<br />
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I try to push all of this stuff into the back of my mind, or not so close to the forefront because if I thought about it 24/7, I'd destroy myself! I'm just thinking of today, and the <em>now</em>, cause the now is all I have. Nobody's guaranteed tomorrow, and when faced with all of these super-critical health issues, it makes that even <em>more real</em>. <br />
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I enjoyed two birthday parties this weekend, and it was nice, but it's also a reminder on how many more birthdays, family events, and holidays I may have left to spend with my friends & family. <br />
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These next three months are going to be <em>very hard</em> because I will start to get all of the side effects that I was hoping to be spared of. The constant pain, which I'm in pain every now and then and it <em>completely </em>dibilitates me when it comes. The stomach cramps are unbeareable, and all I can do when they come is lay in fetal position until it passes. I try to not make a huge show on when these occur, and to be honest, I don't really want to talk about it here, because I don't want to sound like I'm complaining, or expecting sympathy or pity from anyone.<br />
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What really bothers me also is that people assume things that they have <em>no idea</em> about. I'm disabled, and just because I wear nice clothing, makeup and don't complain about all of my 'private horrors' doesn't mean that they're not real. I wish they weren't real, and I wish I could say that I was feeling fine, but I'm not.<br />
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This medication 'Letairis' will destroy any strength/energy I have. In fact, I'm struggling to keep my eyes open right now to finish writing this blog! Most of the side effects of <em>all</em> of the medications that I'm taking is dizziness and feeling sleepy all the time!<br />
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So, I'm going to wrap it up here and get some rest. I'm just concerned about these next three months, and I'm <em>really</em> scared on how these effects will change me. The jaundice which is what I've <em>really</em> not been looking forward to, because my family & friends will see me in a very bad way and I don't want anyone to worry about me more than they already are.<br />
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Ok, I will keep in touch...till next time! ;-)Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-983796520131575676.post-54271075871827397532011-08-31T14:33:00.000-07:002011-08-31T14:33:25.504-07:00More bad news...<a class="twitter-share-button" data-count="horizontal" data-via="natwillsbrg" href="http://twitter.com/share">Tweet</a><script src="http://platform.twitter.com/widgets.js" type="text/javascript">
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Well, I didn't get the medical clearance that I need for my transplant. The right side of my heart still has a significant amount of hypertension, so I am being put on a medication called 'Letairis', and this Letairis has some <em>serious</em> effects on the liver. <br />
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More itching, which I'm itching like crazy already, and when I do itch, a tiny scab can cause <em>alot</em> of bleeding, so, this is a side effect of Letairis, as well as Jaundice, which is a symptom I've yet to experience, and stomach pains, which I already have dibilitating stomach pains, and heart palpitations, and to me, it just seems like this new medication is going to put an extreme amount of damage on my liver. I really am at the point where I don't trust <em>any</em> of these Dr's at Mt. Sinai, who like to play god with my life! This never ends!!<br />
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I'm making a decision, and it's entirely up to me to make this decision. I've been thinking of the 'quality of life' that will be given to me after my transplant, and I don't think I want that quality of life; constantly going to the Dr's, fighting for a chance at survival when I may die anyway, and my attitude towards this has faded overnight, it seems. I have no more fight in me. I can't take any more bad news, it's destroying me. I can't take the fact that these 'Dr's' are like my baby-sitters, and I have to ask permission for anything I do. And it will <em>never end!!</em> Life post-transplant isn't going to be any better than the life I'm living now. I will never be 'healthy' again, I will <em>always</em> be on hard-core medication, having to see these a-hole Dr's on the regular, I just don't think I can do it.<br />
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I know that people care about me, and they want for me to have a long life, but, if this is the kind of life that's going to be in store for me, than...I don't want it. If this is God's will that I die from this illness, so be it. I want to enjoy the life I have <em>now</em> and not have to have myself and my entire family constantly worrying about me.<br />
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I have some major decisions to make, and I will not make them lightly. But, I am considering leaving the transplant clinic, eating a healthy diet, and when the time comes that my liver is just too weak to go on, then I want to go on. I feel like nobody's even bothered to ask me if this 'quality of life' is what I want. To be forever on SSI, forever disabled, forever seeing these Dr's, and death awaits us all! Is this really worth it to 'extend my life' for who knows how long, and have my family in constant worry & putting my loved ones in jeopardy for me? I don't want to put others, especially my family, in unneccesary peril and danger to themselves just so I can extend a few yr's on my life! I would rather enjoy the time I have, now, with my family and son, and when the time comes for me to leave this earth, it comes. Who am I to interfere with what God has in store for me?<br />
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What I guess I'm saying, and I'm sure it's very hard for everyone to understand, but I would like the last yr's of my life to be stress-free, and happy. I don't want to die on an operating table, or from a massive infection/rejection of a liver. I want to enjoy what I have now, and cherish these moments.<br />
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I don't know, I'm just <em>so sick and tired</em> of these constant, never-ending Dr's appts, tests, being poked and prodded, having to get 'permission' from a Dr in order to do <em>anything!</em> It's not like they seem so adamant on 'saving my life' anyways. All they're concerned about is, 'Is her insurance going to pay us for this & that?' It makes me sick to my stomach that these Dr's have the final say on <em>every single thing</em> that I do! I don't know, I'm just losing all of my bravado and ignorance is definately bliss!<br />
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I just feel like this is a never ending cycle that will never stop, and I will be seeing Dr's for the rest of my life, & I'm <em>really</em> not ready for that, I have a deep mistrust of Dr's, and with good reason. I've been lied to by Dr's before, and I don't see that changing!<br />
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Well, I will keep everyone posted, please leave a comment if you have any advice. Thanks!Unknownnoreply@blogger.com2