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...
Sunday, April 15, 2012
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...
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