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.
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.
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."
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'.
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.
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...
Monday, July 30, 2012
All 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.
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!
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.
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.
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.
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?"
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.
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.
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.
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...
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!
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.
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.
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.
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?"
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.
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.
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.
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...
Friday, July 13, 2012
Seeing the surgeon...
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...
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...
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