I finally saw the surgeon on Monday, and to be honest, I was very 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).
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.
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!
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.
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.
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!
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.
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.
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.
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...
Friday, July 13, 2012
Wednesday, June 20, 2012
Things 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.
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.
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.
On another note, my son, Jonah's, baseball team were playing in the Jr. World Series and he won!! I'm so proud 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.
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!
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 very 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...
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.
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.
On another note, my son, Jonah's, baseball team were playing in the Jr. World Series and he won!! I'm so proud 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.
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!
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 very 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...
Friday, June 8, 2012
Getting 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.
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.
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.
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).
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.
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?
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.
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...
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.
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.
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).
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.
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?
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.
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...
Monday, May 28, 2012
I 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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...
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.
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.
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.
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.
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.
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.
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.
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.
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.
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...
Sunday, April 15, 2012
Getting 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.
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.
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 here. 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.
Well, that's about all for now. I'll try to post after my heart catheterization. Till next time...
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.
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 here. 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.
Well, that's about all for now. I'll try to post after my heart catheterization. Till next time...
Tuesday, April 3, 2012
Jumping 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.
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.
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.
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):
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.
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.
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 very stressful on the both of us, but it's also brought us closer together.
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.
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.
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 highly 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.
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 before 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!
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 just 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...
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.
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.
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):
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.
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.
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 very stressful on the both of us, but it's also brought us closer together.
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.
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.
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 highly 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.
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 before 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!
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 just 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...
Saturday, March 17, 2012
The 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.
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.
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 definitely 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 not 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 another 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.
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.
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.
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.
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...
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.
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 definitely 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 not 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 another 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.
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.
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.
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.
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...
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