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...

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...

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...

My living donor...

I've been hesitant to say who my living donor is going to be, and I'm going to keep this person's anonymity, at least, for right now.  This person has already had blood work, and is a match, and goes for their screening, which is going to be all day, both days, on Monday and Tuesday, the 12th & 13th of March.

I'm not nervous that this person will not be able to donate, because I'm sure they will, but it's just scary having someone put themselves in jeopardy, not really in jeopardy, but to go through an operation, for me. I really wish there was another way.

I spoke with the surgeon, who was a very nice man, and he told me that even with a MELD score of 22, which is what it's currently at, I wouldn't get a cadaver liver anytime this year, and more than likely, my PAH will not maintain it's current levels, which is what makes me medically cleared for surgery.  What makes a liver transplant more dangerous, is the fact that those who get a cadaver donor are very ill by the time they have their surgery, and if you're very ill for such a serious operation, then the chances of having something go wrong are much higher.  By getting my liver transplant now, the chances of success are far greater than waiting until all of the horrible illnesses that come from liver disease happen.

So, I'm pretty much on pins & needles until Tuesday, which is when I'll know if this person is going to actually be my living donor.  I sure hope so.

On the brighter side, I've been taking yoga classes, and they've really been working wonders for me.  I'm also pleasantly surprised that I'm more than able to do everything that everyone else does, if not, more than the average student.  The only 'limitations' that I thought I had, were the ones that I've put upon myself!  It's also helped with staying smoke-free, which I've now been for over 3 weeks.

I will write a longer entry on Wednesday, after I know what happens with my potential living donor.  Till next time...

My Appt. today...

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Well, my feet (as you can see) are the size of tubs, I noticed yesterday that my ankles were a little swollen and I woke up to this! For those who don't know me, I have (had) nice, slender feet & ankles, but right now I don't. The skin's peeling on them too, cause the skins stretched so much so fast. They are ITCHING LIKE CRAZY! I have this powder stuff that tastes God awful, so I usually don't drink it, but it's for the itching & I've been scratching the hell out of my ankles & feet. Oddly, my chest has been itching, too, so I will take this 'powder junk' for the next few days, see if it helps. Well, basically, the Dr. said that she wants 3 non-invasive tests done (CAT Scan, Breathing Test & Echocardiogram) to make sure that the Viagra that I've been on is helping with my Pulmonary Arterial Hypertension (PAH) since I've had my Heart Catheterization done. My PAH must be under control before I get on the 'active' liver transplant list because if it's not, I will not survive the surgery, the risks would be too high, they wouldn't even try. So, the Dr. also agreed w/me that my MELD should be WAY higher than 12, which is what it's at now, due to my liver enzymes only. When they factor in the PAH, my MELD will be higher. So, I will see her in a month, and during this month, I will get these 3 tests done. When I see her, hopefully everything will look good, my MELD will be raised (I believe it will be raised regardless) so I can be on the active list. I feel exhausted, so I'm going to rest for now...the Dr. also told me to take double the dose of the water pills I'm on now. Hopefully, my feet & ankles will not be swollen anymore, due to the raise in my water pill dosage. For those reading out there, please click on the "Follow" button on the right of this page and it will ask you to sign in, it will say google, but you can sign into any email account you have, it doesn't have to be gmail, just put in your email & password & you will be following me, and I can see you following me. Wish me luck on these tests, I have to call tomorrow and schedule them. Will keep an update on when the tests get done. Thx! Till next time...