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...

The screening process begins...

I've now got three appointments to see the surgical coordinator, anesthesiologist and the psychiatric evaluation on February 17th.  All three appointments are very close together, maybe a little too close together, because my first appointment is at 9:30AM at the E98th Street building, and that one is for the surgical coordinator, then at 10:00AM, I've got to walk about 2-3 blocks to the main hospital where I've got an appointment with the anesthesiologist, after that, I go about one block up to my final appointment (and probably, the most boring/challenging) to see the Psychiatrist to be evaluated, as well.

I've got no fears as to seeing the psychiatrist to be evaluated, I just don't know exactly what they're going to say to me.  I always like to be prepared for those types of questions, and have answers ready to tell them.  But, I guess I'll just have to play it by ear at this point.  That's fine, I'm just going to answer the questions, without giving more information than is necessary (which, sometimes when I'm caught off-guard, I start to talk about things that are not relevant to the questions that I've been asked, giving away too much unnecessary information!  I've come way too far to make idiotic mistakes like that now!).

As for other news, I've got two potential living donors who wish to be screened, which is really good news!  I do feel a little torn, however, since both are, obviously, very close to me, and I don't want to put anyone in harms way for me.  But, as I've said in the past, knowledge is power!  I've been dedicating my time to know as much as possible about the living liver donation program at Mount Sinai.  That's important, and I've told both (as well as any potential future) living donor candidates to do the same.

It's hard for me to relate to that, since this is a completely voluntary decision made of their part, and, I know it's not fair for me to compare myself to any potential living donors, but I feel like this is a little unfair.  This is completely voluntary for them, but it's not voluntary for me.  No one ever asked me 'Hey, Vicky, wanna get a liver transplant?'  No.  In fact, I was told 'Either you undergo a surgery that has many risks, or the odds of living to 50 years old are less than 20%'.  I've even had the original Gastrointerologist back in 2007, when I first discovered that I had liver disease, tell me 'You know you're going to die from this, right?'  That was really hard to hear those words, and perhaps, when told so bluntly like that by a professional, I just couldn't deal with that, which lead me to divulge in my substance abuse problems, because I just didn't want to accept what he had told me.  I wanted to 'wake up' from this nightmare, and be ignorant about my illness and, in a lot of ways, be in total denial as to how serious my illness actually was.  Ignorance can be bliss, for some.  But not when it comes to your health!  We have one chance at this life, and once your health is gone, then most people take it one of two ways.  They either a) be in total denial about the magnitude of their illness and/or make the decision to not see any doctors, ever again, and just die from their illness, or b) do all they can to prolong their lives, and become eager to know what can be done about their illness, and that's when the 'survival mode' kicks in.  The will to live & the will to want to live and not give up.  I've been torn between these two courses of actions, but, in the end, I've decided that I will not live in denial of my illness...I just can't.  I've got too much to do, so many wonderful things to experience, things that I've yet to do with my life to just let it end here.  Not like this, and not at this time.  I've got too much to live for, and perhaps, in a way, everyone does, but not everyone can deal with all of these problems and continue to fight them.

It's just amazing that something that seemed so far off, is now right around the corner, and I hope that God gives me the courage to walk into that hospital, sign all paperwork and 'put my life in the surgeons hands'.  That's going to be the hardest part, for me.  Having to willingly give them my arm, have an IV put in, have the anesthesiologist inject me with general anesthesia knowing that there's a chance (even if it is a small one) that I may not wake up from this surgery.  All of the things that I want to say to my friends & family before I go into surgery.  That's going to be really hard for me, too.

I'm not going to be a 'drama-queen' and say my farewells to everyone prior to surgery, but I feel like maybe I should say something.  Perhaps that's just something that i won't be able to do.  All of this is very difficult and very real for me to accept.  But, this is what needs to be done.  My liver disease will only get worse over time, and it's not even the liver disease that will be fatal, it's the Pulmonary Arterial Hypertension.  I've never truly understood how serious my PAH was/is.  I should've realized that long ago, because I know how much that medication costs and it's insane!  The Letairis costs $5,300 a month, and the Adcirca costs roughly $1,400 monthly.  That's a lot of money and the doctor had to put in a special authorization to my insurance for that and it was approved (thank God!) because if they wouldn't cover that, then I'd already probably have one foot in the grave by now, maybe both!

So, I will keep advised as to how the screening for potential candidates for a living donor goes, and if there's anyone who wishes to know more about the living donor process, please feel free to contact me, and you can check out the links provided on this site, or email me and I will share that information with you.  Just so you know, I'm blood type A+, meaning, that I can accept a potential donor who is: O+, O-, A+ or A-.  Thanks!  Till next time...

Time's up! The decision must be made...

What a bunch of drama!  I hate to start off an entry like this, but there's really no better way to explain how I'm feeling right now.  Ok, first off; I saw the liver specialist (Dr. Schiano) today, and I always leave there feeling like shit (and I know 'shit' ain't a feeling, but it is for some!), especially going there by myself and having to take all this in with no one to support me when I leave his office, feeling like an emotional train wreck!

Here's the situation:  I had several questions that I wanted to bring up with him, and I wrote them down (since my memory is pretty bad), and I'll share here what the questions were and how they were answered.

1. Q-Recent lab results have shown that my AST, ALT & Alkaline Phosphotase have, strangely, shown normal, after being extremely high ever since I was diagnosed with liver disease.  Why is that?  Also, why are my RBC's, Hematocrit & Hemoglobin low?
2. Q-What forms of Birth control can I get on?
3. Q-I'm in serious need of Dental Implants.  What are the chances of success, and I will I encounter rejection issues, since I need not only dental implants, but bone grafting and a sinus lift, as well?
4. Q-I'm going to FL on May 9th until the 14th.  Would it be advisable to get on the FL waiting list for a transplant?  Would my NY Medicaid cover this?  Is it more trouble than it's worth?
5. Q-How long am I expected to be on the NY waiting list?  What is the length of the medical clearance that I've just been given as of December 19th, 2011?  The Pulmonologist informed me that if the transplant is not done in 6 months, another heart catheterization would be required.  Is this true?
6. Q-How can I get any potential living donors screened?  What exactly does the process entail?
7. Q-Is there any possibility that a liver transplant is not necessary?  Has this ever been known to go away?
8. Q-What is the life expectancy if I choose not to undergo surgery?
9. Q-When can I be expected to have my liver transplant?  Regardless of living donors, if I have to wait for a cadaver liver?
10. Q-If I got a cadaver liver transplant, would it be a full liver?  Is the wait time less if I was to get half of a cadaver liver?
11. Q-Would my insurance pay for a home health aid/nurse attendant after my liver transplant?  If so, for how long?  If not, how long would I require, if at all, assistance with daily activities?
12. Q-I've been feeling very depressed lately.  Would it be harmful to get on some type of Anti-Depressants? (I can't believe I'm actually considering that, but for me at this point, I feel that it may help me with coping with all of this stress)

So, there's the questions that I've asked and here are the answers:

1. The low HCT, RBC's & Hemoglobin means that I'm anemic.  I should be taking Iron vitamin supplements.
2. No oral contraceptives since they can cause clotting issues, and for someone who has PAH, that can be very dangerous.
3. After transplant, when my PAH no longer requires medication (which, for 4 out of 5 people who have PAH and Cirrhosis, in one year the PAH goes away on it's own, post-transplant).  No action for dental implants is advisable pre-transplant due to the PAH.  Also, since my platelets are low, even by getting a platelet transfusion, the transfusion only raises the platelets for about one hour.  Constant platelet transfusion can lead to serious transfusion reactions, such as, infection, pneumonia, and, worse of all, a sudden drop in my blood pressure, which will then have dire consequences on my PAH, which will result in death.
4. Yes.  FL has a much shorter waiting time than NY does.  I need to contact the University of Miami, however, I would be required to live there for about 1-2 months, since the time it takes from when I get a phone call for a cadaver liver, I would need to be there in no more than 4 hours.  Insufficient time to jump on a plane and fly to Miami from NY.  I also need to ask them how long the wait time is for someone with a MELD score of 22 (my current MELD score was so low, it was like an 8, but due to the extenuating circumstances of the PAH, it's now increased from 8 to 22 and will continue to increase by 3 points every 3 months, but I would be required to have a heart catheterization every three fucken months!!!  That's simply crazy!  I've had 2 heart catheterizations in my life, and even with all the Fentonyl and Morphine that they give you, it's still hell!) NY Medicaid should cover all of this, it would be unnecessary for me to get FL medicaid, however, I would need to live in FL for the wait time that it would take for someone with a MELD of 22 (I think it would make more sense to get another heart catheterization in late April, so that I can go to FL with a MELD score of 25, which will make my wait time shorter) to get a liver transplant, which could be a month, or it could be more.  I would also probably need to stay there for a little longer after I was to get my transplant, but can then come back home to NY and continue my post transplant care at Mount Sinai.  I think this is a very difficult decision to make, however, because I won't have any of my family there with me when I go into a surgery that I may not wake up from.  So, needless to say, that would be very hard.
5. NY Wait time, even being a priority, and this is if my MELD remains at 22 (which I will probably 'bend-over' and get the heart catheterization to show that my PAH is still normal, like it is now.  If it was to show up abnormal, then I would be off the list, have to go back through all the BS with the Pulmonologist & Cardiologist to have my PAH under control again, so that I can, once again, be medically cleared for surgery.  There's simply no possibility that they will perform the surgery if my PAH is not stable, since I will die due to cardiac arrest during the surgery.
6. For living donors, to find out if they're potential candidates (and all of this is in the link on the right side of this page, titled 'What Every Living Donor Needs to Know!'), they must have a blood type of O or A (+/- doesn't matter) and it's just a question of being in the physical condition to have an operation after that.  The screening process is 2 days, that consists of vigorous testing (MRI's, CAT Scans, Blood work, etc.) and if shown to be a match, then there is no 'wait time' and a surgery date will be set.  There's a telephone number for the transplant coordinator that would set all of this up, that is, if anybody is willing to undergo the risks involved in saving my life.
7. No.
8. My life expectancy is not in jeopardy from the liver disease.  However, it's the PAH that will cause an early demise.  If I choose not to get a liver transplant, then the odds of me living to see the age of 50 yrs old are less than 20%.  Those who've had a liver transplant, and PAH, in one year, it goes away.  This happens to 4 out of every 5 people who have cirrhosis and PAH.
9. 9-12 months, if my MELD doesn't go up and stays at it's current 22.  However, I believe that I will get more heart catheterizations so it can at least go up to the high 20's, but I can only get a heart catheterization every 3 months...no sooner!  The 9-12 months can turn into more like 8 months if I get another heart catheterization or 2.
10. Yes.  It would be a full liver, not half, and it wouldn't change the wait time.
11. My insurance should cover a home attendant, however, if they don't, then I will have to use my NFT Fundraising money to have a home health aid for about a month post-transplant.
12. Yes, getting on an Anti-Depressent is not a bad idea.  Just not Cymbalta since it's very damaging on the liver, which a lot of medication is)

This was, to say the very least, a lot of information to digest in one sitting, let alone one day!!  I really don't know what's the best 'course of action'.  It's very sad that things are turning out this way, but I can't sit here all day crying 'woe is me'...that's just not my style!  But, I think if more people knew what it felt like to be in a position of having someone who can save your life, then it would be one heck of a shock to their system!

Only those who've had to rely on others to give them the most precious gift of all...life, can truly know what it feels like to be in my shoes right now.  Once you lose your health, nothing in the world can get it back, and you only have one chance at this life, and no amount of material possessions can buy you a new life, or buy you the health that you so desperately crave.  It's really true.  People have the power to help, but it's at a very high price, and I acknowledge that.

Who knows?  Perhaps someone will get screened, and I will get my transplant before I lose the medical clearance that I've been fighting for since February of last year.  But if someone is going to 'step up' and be a living donor for me, then they must do so now.  I'd hate to go through all of the things I've already been through by losing my medical clearance.

I've also added a very resourceful link to what it entails to be a living liver donor, and how the generous gift of donation can effect someone's life.  Please Click Here to read more.

Well, I'm getting mighty tired now, and this whole ordeal has totally worn me out!  Till next time...

Starting the Chapter...

First off, I'd like to say to all out there, I've hope you had a wonderful holiday, and may this New Year be a great one for you, as well!

So, the 'Jitters' are really starting to affect me now...it's no longer a fictional (not that it ever was fictional, but perhaps, now, it's feeling a lot more real..hard to explain) event, but it's actually going to happen this year, and I speak of my liver transplant.

Regardless of living donor's, or lack thereof, I will have my liver transplant this year.  As everyone knows, or if you don't know, now you do, I now have the medical clearance that I so desperately needed for my life-saving liver transplant.  I have already seen the Cardiologist & Pulmonary Department at Mount Sinai Hospital, and I'm going to finally continue with the process of getting on the 'active' list on February 2nd.  That's when I see my Liver specialist/transplant Dr.

I must say so myself, that the last week has given me lots of perspective, not just with my health issues, but with other issues as well.  I've been so absorbed in my health, that I've not been giving much thought to what life will be like after my transplant.  I guess, in simple terms, I still haven't decided what I want to be when I grow up! lol!  I think that I've came to two decisions as far as that goes that a) I wish to travel the world and see more of other ways of life and b) I wish to study more...and not just for 'financial' gain, but just for the gain of enlightening my mind.

I'm going on a cruise this May, on a better note, to the Caribbean via Carnival Cruise, for 4 days of some much needed R&R.  I'll be leaving at the port of Miami, returning at same location, to a private island that is owned by a band that I have highly admired throughout my life, 311.  I've never seen them play live, and they will be performing 4 shows during the Cruise and I will also get a photograph with the band, as well.

So, back to the topic of this particular blog, regardless of living donor situation, which may still work out, after all, if I've learned anything from all of this, I've rekindled my religious beliefs that I've abandoned for many years, that the Lord works in mysterious ways, and if it's meant to be that I must wait for a cadaver donor, then so be it!  My health is what's most important here, and in many ways, I don't wish to jeopardize anybody's life, even if they have the most honorable intentions.  I just don't think that it'll work out and I certainly can't use coercion or 'emotional blackmail' to have someone do something that they simply don't wish to do.  I should've really taken more consideration about that, and for that, I'm deeply regretful.  Even though my Dr has told me that a living donor would be an ideal situation for me, I think this is my hole, so to speak, and I've dug it and I'm not expecting anyone to dig a hole for themselves in helping me get out of mine.

The Dr says the my Cirrhosis is Cryptogenic, which, doesn't actually mean 'unknown' Cirrhosis, because that would be more like Idiopathic Cirrhosis, but it means that I have Cirrhosis and there is a cause for it, but that cause cannot be verified.  However, I'm pretty sure how my liver damage has occurred, as is my Dr, I'm pretty certain, which is due to my past substance abuse problems.  All of that is irrelevant, however, because the simple fact is that I have Cirrhosis, it's here, regardless of the source, and I'm in need of a liver transplant due to this.

So, I will close here by saying that I will keep all informed as to what happens after February 2nd.  Thanks for reading, as always!  Till next time...

A bittersweet victory...

Well,I got my heart catheterization on Wednesday, and after 9 months of waiting...I finally got the medical clearance that I've been waiting so long for & thought I would never get. I'm now on the active list, and can proceed with getting the necessary steps taken to get my life-saving Liver transplant.
This may be a bittersweet victory for me. I'm uncertain if I now have any living donors to be screened & I hope I do. If I don't, then I will be waiting for another 9-12 months for a cadaver donor, which feels like a lifetime away. It may also be a death sentence. I don't know if my body can continue functioning for that long...and with all of the pain I'm already in...9-12 months more will be a God-awful nightmare. This means a year of going to the emergency room...getting more taps (paracentesis) done, possibly falling into comas, just to be brought out of them and sent home...I just don't think that I can take that.

I really do understand that it's a HUGE order to ask of anyone, especially since everyone is out for themselves...and if the shoe was on the other foot,I don't think I'd be volunteering to undergo an extremely invasive surgery for my family, but I can't help but be a little angry, well...not angry, but disappointed & depressed. It makes me feel like no one values my life. I was expecting this to happen & I tried to prepare for the worse, but now that I've FINALLY crossed this barrier that has been keeping progress from moving forward, I thought it would all be easy from now on.

I just feel like I have such a large family & assumed that someone would step up & wish to do this for me. I feel foolish in making that assumption.

Since I've started this blog, I've meet so many people that have had transplants, and have had successful living donor liver transplants, from family members that took that courageous, selfless, act to help their loved one, and I was pretty confident that someone would step up for me.

Perhaps I'm making unsubstantiated assumptions, I don't know, but it feels like a very hallow victory. Call me a pessimist, but I just don't think that anyone will wish to be screened for my living donor, or may get screened and then decide that the risks are way to high for them to consider. And the risks are high. I'm not minimizing it in any way, I know this is asking for something that most people would not want to give, even if it meant the suffering and death of a family member. The screening process is a vigorous one. The living donor will be assigned a 'counselor/advocate' who's job is to make sure that this person is not being coerced in any way, shape or form. In fact, I'd even go as far to say that this 'advocates' job is to discourage the person from donating, in a way. If the slightest hesitance is shown, then the plug would immediately be pulled, and this 'advocate' would not let the screening go any further.

This isn't something that I can ask someone to do. This is something that someone WANTS to do, is volunteering to do. Even though I feel like someone should be volunteering to do this, I cannot expect anything from anyone. Not unless they're whole-heartily volunteering to do this, because it's, what they feel, the 'right' thing to do.

I guess only time will tell at this point.  They're other factors to be weighed in, as well.  Does the living donor have the 6 weeks to take off of work without getting fired?  Do they have children that will worry about them, and who need them?  Are they healthy enough to undergo a surgery of this magnitude? Are they what's considered a 'high-risk' donor, due to medical conditions, and if so, is it in my best interest to live with whatever health issues that they will pass on to me?

So many questions...so much 'red-tape', yet so little time.  It's extremely discouraging, and it's also very depressing.  It really makes me realize how alone I am in this world.  I'm not saying that I don't have anyone who cares for me, or that people don't care for me because they're not willing to do this...but, nonetheless, it's depressing.

So, I will see my Pulmonologist/Cardiologist on Monday, and all paperwork will go to my Liver Dr, and I will have to see him to plan the next stages of this journey...perhaps the final stages of this journey, perhaps the beginning, I don't know yet.  Time will tell.  Till next time...

Taking a Second Shot...

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I'm having my right side heart catheterization, again, at the middle of this month (the Dr has yet to given me a date, although she said it would be the middle of December, probably near Christmas) to determine if I am medically cleared for surgery...or not.

I've been in this position once before, 3 months ago, and was sorely disappointed when I did not get the medical clearance, however, I feel this time may be different.  My Dr. has not discussed putting me on more medication, and has not even discussed what would happen if I don't get medical clearance.  I sure hope I do.  I've been experiencing horrific pains, and they're more constant than ever.  I sometimes feel like they're just letting me die...and if they are, why prolong the process and make me suffer unnecessarily?  These pains are so bad, even with the Percocet that the Dr prescribed for me, it does nothing.  I feel completely and utterly useless.  Like I serve no purpose other than to take up space and breathe air.  These pains come so frequent and hard, that I can't even leave my house without the fear that I'll be forced to stop in the middle of what I'm doing to take a car service home.

Perhaps I should try to get out more often.  I find when I'm outside and walking around, the pains usually don't come.  It's when I'm immobile that the pain comes, and although when it comes it's completely debilitating, and my instincts are to just lie on the bed, in fetal position, until it subsides (which it takes sometimes hours for it to subside, and when you're pain level is past the point of tolerable, hours seem like lifetimes), but I discovered that by going against my instinct, and mustering all the energy that I have, standing up and walking around sometimes alleviates it.  It's very weird, and I don't know if I'm explaining it all that clearly.  But, that's about how it feels.

I went to the Emergency Room at Mount Sinai a few weeks ago.  The stitches on my leg needed to be removed and the abscess needed to be cut open and drained, which, by the way, the Dr. did with no anesthesia whatsoever.  It wasn't as painful as it sounds though.  Once he removed the stitches, I could see that it wasn't fully healed, and my Dermatologist told me that it wouldn't  heal, since it was still leaking with nasty fluid (mostly very light colored blood).  But I was kind of surprised when the Dr at the ER pulled out a scalpel and did a little cutting, to get it more open.  He was pushing it so hard, and it was just oozing out, I knew what was going to happen, as I'm sure he did, as well.  I could still feel a very hard ball underneath, which was what needed to be drained, and sure enough, he kept pressing and it just squirted out like a fountain.

They did a culture on what it was, and it was determined to be infected, so about 1-2 days after I went to the ER, I was given an antibiotic called Bactrim, and I've never had any allergic reactions to any medications before, but this appeared on my arm (the red bumps in the picture) and my skin was very itchy and felt prickly.  The Dermatologist was convinced that this was an allergic reaction and suggested that I stop taking the antibiotic, Bactrim, immediately.  So I did, but I wasn't put on another antibiotic, and my body's White Blood Cells are too low to fight off this infection on it's own, and it's not healing properly, it's still oozing.

So, I've yet to have the date for the  right sided catheterization, but, I do have faith that I will get the medical clearance that I need for surgery, and once I get the medical clearance, then living donors can get screened, and if found to be a match, a surgery date can be set.  I'm still a long ways from that happening, but once it starts to happen, at least I know that the 'gears are grinding', so to speak, because I feel like my treatment has come to a complete stand-still and while the Pulmonary Hypertension Unit is trying to 'stabilize' my PAH, my liver and spleen are deteriorating at a rapid rate.  Soon, I hope, I can finally start my life-long journey to recovery.  I will post once I get my heart catheterization...wish me luck!  Till next time...

Holding my breath...

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I haven't written in awhile and that's because there's really not much to tell.  However, there are a few things that I would like to say first off.
I would like to personally thank everyone who has donated their time, money and prayers with me this last few months, I really appreciate it.
I've had a bit of a shock this last week.  I had a 'tumor' on my leg, 3 doctor's told me that it was benign, and I was referred to see a dermatologist, which I saw this past Friday.  Even the dermatologist, at a glance, said that it was a tumor.  It was a marble sized ball in my thigh, on the top part of my leg.  It felt like one of those little rubber balls that come out of the quarter machines, with toys/candy for kids.  So, he said it needed to be biopsied.  I thought he was going to schedule a biopsy, but to my surprise, he did it right then and there.  So I was prepped up, and he stuck this large round lancet-like device into the tumor and said "wait a minute...".  I was sitting back, so I propped up to see what was going on and to my surprise, it was oozing with this white mucus!  The Dr squeezed it out, swabbed it to get a sample, looked up at me in astonishment and said "It's gone!".  I now have two stitches in my leg, and have yet to find out what it was.  It didn't hurt, or anything like that, it was just there.  It started growing like 9 months ago, and it stopped growing when it got marble sized, perhaps a bit bigger and then started to harden.  Never did the spot feel infected or irritated in any way.  That's pretty odd.

As far as my liver Dr. goes, there's no news to tell there, and it's pretty damned frustrating!  I'm still waiting for medical clearance, and my Pulmonologist/Cardiologist had told me that I was to get another Right Heart Catheterization in December, yet no one has called me to make an appointment for the procedure.  This is so stupid and such a waste of time, because they're so focused on treating something that I don't even feel.  I must admit, my ability to climb stairs and walk has gotten better, as far as my breathing goes, but my spleen/liver has gotten much worse.

I'm pretty much living off Aleve, because I've been getting these pains delivered from the devil himself in my left side, and it makes me nauseas.  If I take Aleve, it pretty much subsides and I have to take 2-3 a day.  I can't live like this!  What if I don't get medical clearance next month?  I don't have time for the PAH Dr. to tinker with my medication and sit back and wait to see if it 'gets better'.  I know it's gotten better because I can feel a great difference, so I will be rather shocked to find out that I still am not medically cleared for surgery.

I feel like everything has come to a grinding halt.  My liver Dr. was told, by me, of the pains that I've been getting and he said "The PAH medication can enlarge the spleen".  I'm like "My spleen was already huge by the time I came to him, and what's going to happen is my spleen will rupture, and then what?  They'd have to put me to sleep to remove my spleen, and if that's the case, then why am I not (by what the PAH Dr. says, who I haven't seen in months) medically cleared for my liver transplant?  Shall we sit back and wait for the PAH Dr. to tinker with my medication at my expense?  What if my liver/spleen get so bad that I have to be hospitalized?  Or fall into a coma?  Will I just die if I don't get this 'medical clearance'?"  Shouldn't it be my decision to go under surgery, regardless of the risks?  The way I feel, is that the risks of things going bad are already there.  If the risk is 5% greater of me not making it, then that should be a risk that I should be willing to take.  It should be my decision to go through the surgery, not my Dr.'s.

It's just so frustrating because these Dr's don't care about my 'well-being'.  They don't care if I suffer, and go through hell and back.  Heck, they don't even care if I get a liver transplant or not!  It's all about milking my insurance for as much money as they can get, and having someone die during surgery is something that a surgeon doesn't want to have on his record.  The better success rate a surgeon has, the more highly recommended he becomes, the more he's recommended, the more money he makes.  It all boils down to the same thing: money.

Well, I don't care about money, or the integrity of any Dr's.  I care about getting my liver transplant and I'm going to start to put everyone on the hot-seat with me!  It's so crazy that I have to corner my Dr's to do the right thing!

I'm just not seeing the light at the end of this tunnel, it's like "Yeah, my imaginary liver transplant".  I can't even get on the damned list until I get medical clearance, and then what?  I wait on the list for 2 years?  Or possibly have friends/family members screened as potential donors?  That's all I really want, because I pretty much already know that the liver I get will not come from a cadaver, but from a living donor.  I'm not going to wait and possibly die on a 'waiting list' for a liver when I have so much family and people who are willing to be tested as a donor.

Wish everyone a Happy Thanksgiving, I'm going to my sisters house, unfortunately, my son will not be there with me, he's going with daddy to Maryland for the holiday.  Till next time...

And the Fundraising Begins...

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I've added a new link on the right side of this page, I'm now a patient of National Foundation for Transplants (NFT) and you can make a tax-deductible donation in my honor by clicking here.  When you click to donate, please be sure to put that your donation is in Honor of Victoria Santiago.
If you don't put that, it will go to the general cause of NFT.  I've also been recruiting volunteers.

It's very vital to the fundraiser that I have volunteers to help me, weather it be people who can donate an hour of their time, donate items, or any services that you can offer (i.e. babysitting, haircuts, baked goods, items you wish to get rid of that can be auctioned off, etc.)

Now, in order to be a volunteer, I need to put you down as one.  For this, I need your full name, address (where you get mail), phone number, and email address.

I'm going to give a short description of what volunteering entails (all don't apply, even if you can do one of these, it would be much appreciated!):

• Contact local (and national) people you may know (friends/family) who might help with donations, volunteering time or sponsoring events
• Participate in local events that have/are being(been) planned
• Collect donations at booths at events, put canisters by cash registers at local stores (materials will be provided to you) & collect funds to be handed in at the next Committee Meeting
• Contact local businesses for donations of products/services to use at an event (auction &/or raffle)
• Contact local civic organizations and ask for volunteers to help (methods of approaching organizations & businesses will be discussed at Committee meetings, as well as all proper forms)
• There will be 'brainstorming sessions' at Committee meetings and all ideas are welcomed/needed!
• Committee meetings will be held 2x per month, for 1 hour, on a weekend in the evening, so more can attend (I will not have Committee meetings interfere w/work schedules & make them at appropriate times when everyone will have an hour to spare

These are just a few things that a Volunteer can do.  I am very considerate to everyones hectic life, and I don't wish to interfere with it.  However, this Fundraiser is a necessity for my survival.  Life after transplantation is not easy.  There's lots of medications that I will need to take for the rest of my life, and I'm not certain that my insurance will cover all of this.
Also, all funds that are donated go to NFT, and NFT regulates what can be reimbursed, and what cannot be reimbursed.  For example, I just put in for reimbursement for a blood pressure monitor that my PAH Dr. told me to get.  That will be approved by NFT.  If I wanted to buy new clothing, or pay my phone or cable bill, these will not be reimbursed to me from the funds that NFT has in my honor.  Only medical expenses, and expenses related to my transplant will be reimbursed to me.  So anyone who wishes to make a donation, be assured that this money is going towards medical expenses.

Committee meetings are essential to keep the Fundraising efforts running smoothly, and to ensure that efforts are being made towards the cause.

If there's any students who wish to become a volunteer, since NFT is a 503 (c) charity organization, it can be put towards any school requirements of volunteering.

Also, Volunteering is a great thing to add to your resume.  Companies are impressed to see that you have volunteered your time for a very worthy cause.

I have much more information on volunteering, and, as most of you may already know, I'm planning a Fundraiser in Central Park which will be a 'Movie Night'.  I'm very grateful for those who have agreed to help with this particular event, however, to keep the Fundraising Committee together and aware of what is going on 'as a group', is vital in order to help with any particular event(s).

If you wish for more information on volunteering, please send me a message.  It doesn't matter what state/country you live in, anyone can volunteer by helping with fundraising efforts, and documents can be emailed to those who live outside of NYC.  Anyone who wishes to help me in my fundraising efforts are welcome!

Thank you very very much for all of your help and time.  I look forward to having you as a part of the fundraising committee!  Have a blessed day!

The Return of the Ascites...

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Well, this was to be expected, I guess.  This medication, Letairis, is showing it's awful side effects and pretty quickly, too.  My feet, ankles, toes, legs and belly are balloons, once more, except my diuretics have already been raised, so taking more of those won't help.  Also, my tummy is exceptionally large, once again, so the water pills alone are not enough.  This is also a side effect of the Letairis, which I can't just stop taking, since it's crutial for my medical clearance and helping my PAH. 

So, I'm pretty much at a loss of what to do, but I'm also pretty sure what needs to happen.  A paracentisis, which is also knows as a 'tap' where a needle is inserted into the abdomen and the fluid is drained out.  I probably also need IV Lasix (one of the diuretics I take in pill form) to drain the fluid from my legs & feet areas. 

Unfortunately, this is all inpatient stuff, so I'm going to pack a little bag with clothes/necessities and go to Mount Sinai's ER.  I'd rather be admitted there, since they have all of my medical history there already, and it's a much better hospital than Woodhull, which is my local hospital.  So, it looks like I'll be 'out of commission' for about 2-3 days, hopefully no more than that.  Also, my Dr. will be able to visit me while I'm there, just to check in and see how I'm doing.

Well, that's about all for now.  The weird thing is: I'm not afraid.  My friends/family are freaking out WAY more than I am.  I've spoken to a lot of post-liver transplant patients through TransplantBuddies and they've been hospitalized more times than they can remember!  Having the taps done (one person had 7 liters of fluid drained from them, and another had 120LBS of fluid drained, isn't that insane?!) are part of the territory when it comes to liver disease, everyone who's a pre/post-liver transplant patient knows that!  It's just something that happens, and it gets dealt with like anything else.  So, I feel like to be nervous & complain about going to Mount Sinai is acting like a baby compared to others who've went through this before me!

You know, it's amazing to hear other's tragic stories on what they've went through, and came out alive and living their lives, and loving it!  That's really been my inspiration lately, especially when I was feeling so tired of everything and all of this horrible (which is an understatement) news that I've had to deal with this last month, but hearing others who have already went through all of this, and are living life now, has really given me the strength and courage to push through!  I'm even considering writing a book.  Not just on all of my health problems, but of my entire life, things that I don't really talk about here, but have only touched on (such as being raped, living on the streets, selling myself to support an addiction, having overcome all of that and now, facing the ultimate test of faith, by having all of these health issues).

I've already got a very full plate, since I'm spearheading my Campaign for Fundraising (for more info, click here), and getting together as many volunteers as possible.  It is recommended by NFT that I should designate a 'Chair Person' other than myself who can do all of this for me, but I really don't have anyone who will fight for this cause as much as I will.  Everyone I know has jobs, so they're time's already limited, but, to my surprise, I'm actually really good at fundraising, and have came up with some great ideas and events.  However, I will designate someone to be my Co-Chair person, so that when times like this, that I'm 'out of commission', my Co-Chair person can take over and make sure things in the Campaign are running smoothly.

Also, for those who wish to Volunteer, or would like more information on Volunteering for my NFT Campaign, please send me an email and I will send you all of the information you need.  It's crutial that I get more Volunteers, regardless of what state/country you live in, you can Volunteer towards the Campaign, and, sadly, as of right now, including myself, I only have a lousy 9 Volunteers!  So please send me an email on how you can help! 

Thanks for listening, and wish me luck at Mount Sinai! Till next time...

The Next Painful Months Ahead...

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So, I'd be lying if I said I wasn't scared out of my mind right now.  This new medication that I'm on, Letairis (click here for more info), has a lot of very bad side effects, especially towards the liver (click here to see side effects of Letairis).

This medication was more of a 'last resort' for me, which is why I was put on the Revatio in late March 2011, which is after I got the results from my Heart Catheterization.  At the time, the Cardiology Dept. at Belleview Hospital thought it would be the best medication for me to take that does the least damage to the liver to treat my PAH. 

Even though Letairis is damaging to the liver, it's the only medicaiton that is the 'least damaging' to the liver, however, it still puts a very bad strain on the liver, even for someone who doesn't have liver disease.  There are different types of PAH.  Their's Primary Pulmonary Arterial Hypertension (PPAH) and Secondary(aka Associated) Pulmonary Arterial Hypertention (SPAH/APAH), obviously, I have SPAH/APAH, and in each of these two types, their's what's called the WHO scale, which determines how severe the PAH is.  It ranges from Class 1, being the least damaging, and Class 4, being the most damaged which includes; unable to perform any physical activity, feeling tired even while at rest/sleeping, shortness of breath even while sleeping and symptoms increase with almost any physical activity. (Click here to read more about the WHO Class Scale)

I have tried to educate myself as much as possible about PAH.  However, it's just more bad news that I really don't need to hear, but in a way, it's best to know what's wrong with our bodies.  In severe cased of PAH, a lung transplant may be necessary.  However, and thankfully, I am not in a Class 4, I'm somewhere between Class 2&3.  This is where Letairis comes in.  It will help relax my Pulmonary Arteries so that the blood may flow  more freely.

I try to push all of this stuff into the back of my mind, or not so close to the forefront because if I thought about it 24/7, I'd destroy myself!  I'm just thinking of today, and the now, cause the now is all I have.  Nobody's guaranteed tomorrow, and when faced with all of these super-critical health issues, it makes that even more real. 

I enjoyed two birthday parties this weekend, and it was nice, but it's also a reminder on how many more birthdays, family events, and holidays I may have left to spend with my friends & family. 

These next three months are going to be very hard because I will start to get all of the side effects that I was hoping to be spared of.  The constant pain, which I'm in pain every now and then and it completely dibilitates me when it comes.  The stomach cramps are unbeareable, and all I can do when they come is lay in fetal position until it passes.  I try to not make a huge show on when these occur, and to be honest, I don't really want to talk about it here, because I don't want to sound like I'm complaining, or expecting sympathy or pity from anyone.

What really bothers me also is that people assume things that they have no idea about.  I'm disabled, and just because I wear nice clothing, makeup and don't complain about all of my 'private horrors' doesn't mean that they're not real.  I wish they weren't real, and I wish I could say that I was feeling fine, but I'm not.

This medication 'Letairis' will destroy any strength/energy I have.  In fact, I'm struggling to keep my eyes open right now to finish writing this blog!  Most of the side effects of all of the medications that I'm taking is dizziness and feeling sleepy all the time!

So, I'm going to wrap it up here and get some rest.  I'm just concerned about these next three months, and I'm really scared on how these effects will change me.  The jaundice which is what I've really not been looking forward to, because my family & friends will see me in a very bad way and I don't want anyone to worry about me more than they already are.

Ok, I will keep in touch...till next time! ;-)

Clearing traffic...

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Went to Mount Sinai today, I'm going to keep this blog brief...I'm kind of tired talking about this.  So, I went to Mount Sinai, was up very early this morning, and I had my Echocardiogram & Pulmonary Perfusion Imaging test done.  After that, I went to Brooklyn Hospital's Dental Clinic, and they were extremely nice there. 

I saw the Oral Surgeon and the General Dentist.  They took Xrays, and what the Oral Surgeon said was that he's looking at 'the big picture' here, meaning that he doesn't want for me to undergo a platelet transfusion, just to have one tooth pulled.  So, it was a good thing that Sam was with me.  The cost of dental implants are very inexpensive there, due to the fact that it's done by residents who need the experience, and my insurance pays for the hospitalization (which would be a must, for the platelet transfusion, I would be in the hospital for a minimum of 2 days), and the only thing that needs to be paid for is the materials, not the labor.  This is what makes dental implants so expensive is the dentists charge a fortune for the labor.  So, the general consensus is that the other teeth that I have under the 7 tooth bridge are not in good shape either.  Also, I was told that I can, and have enough bone, for 2 implants, minimum, on the bottom, to support my full bottom denture.  The implants would work as 'anchors', and instead of having teeth placed on the abutment, it would be snaps, so the denture that I already have can be modified to accomodate the two 'snaps' that would be connected to my jaw, and the denture can snap into my jaw, making a secure fit that will be much more comfortable than it's been now.  I wouldn't need to use polygrip/fixodent or any of that glue stuff. 

Now, as for the top, I would need approx. 4 implants, and they charge $300 per implant, and I would need a sinus lift, as well as bone grafting.  This is a serious procedure, made even more so by my medical condition.  To get everything that I would need done, would probably cost about $3,500, which, thankfully, my boyfriend said he can pay for.  What's more concerning, is my health and if I will be able to get general anesthisia, which I probably will not, due to my PAH, however, I took those 3 tests today that will determine my medical clearance for my Liver transplant.  Based on the first test I took, the stress test, it was very good.  Meaning, that my lungs are compensating for the damage my liver is causing the rest of my body, and that can only be coming from one source: the heart.  So, hopefully, I will get some good news Monday that will let me know that I did very good on these two tests that I took today, and that I don't need additional medication to make the hypertension levels go down.  If that's the case, then I should also be able to get medical clearance not just for the liver transplant, but for the dental implants, as well.

Either way, I'm getting these dental implants, and I'm getting them done at Brooklyn Hospital.  Mount Sinai has a dentist that they 'exclusively' use, and he charges a fortune!  I'm not going to that dentist, and that's the dentist that my Liver doctor is telling me to go to.  What can this dentist do that Brooklyn Hospital can't?  Well, I've found out that they've made a 'protocol' for people who have blood work like me, so it's a little scheme they got going on, a monopoly, so that I feel like they're trying to force me to see their dentist!  What a load of crap! 

So, I will find out Monday how these tests went, and how much my PAH has improved, and on Sept 8th, I'm setting up a plan on getting all of this dental work done.  Till next time...

As the world turns...

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Things are unraveling not so fast as I thought, or maybe too fast.  I saw my Pulmonologist yesterday and basically, had a few questions that I wanted to clear up.  I wanted to know the reason for all of these 'appointments', and just to make sure we're on the same page, I wanted to be sure that the reason was to get my medical clearance for surgery. 

As with most Dr's, the right hand didn't know what the left hand was doing...no surprise to me.  She had no idea that my Liver Specialist had sent me to her for medical clearance, what the status was for my transplant, or anything like that.  All she knew, is that I was referred to her, as a pre-liver transplant patient, and needed my PAH (Pulmonary Arterial Hypertension) evaluated.  Now, she had all prior info on the heart catheterization that I had done in March, and based on the levels of pressure in my arteries, I was not clear for surgery.  That's when I was going to Belleview and was put on Viagra (Revatio).  It's been 5 months now that I've been taking the Viagra (time sure does fly...) and, these three tests are needed to determine how the Viagra has changed the PAH.  She (when I refer to 'she', I'm referring to my Pulmonologist, BTW) told me that enough time has elapsed to now show on the Echo cardiogram and Pulmonary Perfusion Imaging tests that they should be able to see the full effects that the Viagra has had on my PAH. 

Now, back in March of this year, when I had the heart catheterization done, I was told before undergoing the procedure that if the pressure was too high, that they would put a stent in my heart, right then and there.  They did not.  I asked her why a stent wasn't put in back in March when I had the Catheterization, if the pressures were so high.  She gave me an important answer that I was not aware of: the heart has 4 chambers, 2 on the left, 2 on the right...the only way that a stent can be placed in the arteries is if theirs hypertension in one of those main chambers.  That's not what PAH is.  It's the arteries that go from my heart to my lungs that have hypertension, thus the name, Pulmonary (lungs) Arterial (in the arteries) Hypertension (high pressure).  Makes sense, right?  So, I asked her why didn't a stent get put into the arteries from my heart to my lungs?  She said that's impossible.  The arteries from the heart to the lungs are on a microscopic level, therefor nothing can be placed in such small arteries to make them expand, this has to be done with medication, to treat the PAH.  Which is what I've been on, the Viagra, since my catheterization results.

Now, there is a bright side, as there usually always is (and me being the eternal pessimist, it's hard for me to say that!), and that is the Pulmonary Function test results that I did on the 8th of this month.  Those test results came back GREAT!  Now, the Pulmonary Function Test is to check the lung capacity, check for blockage in any airways, to see how long I can walk without feeling completely winded, and to see if my lungs are expanding like a normal (more healthy) person.  On the overall, I scored a 76%, and someone without health problems, has a score starting at 70% and up.  So, I'm within normal range.  That means a few things.  It means that my liver/spleen, as big as they are, are still allowing my lungs to expand and are not being hindered (yet) by the hugeness of the liver/spleen.  Also, it means that my lungs are making up for the deficit of my liver, which can only come from one source; the heart.  On the walking test, what they do is get your baseline heart rate, have you walk back and forth for 6 minutes, and each minute, they check this little box that I hold that's attached to my index finger, to check the heart rate.  So, my heart rate was at a 'normal' baseline to start off with, which is good, and it fluctuated during the 6 minute walk (which it should, since as you exert energy, it's only natural for the heart to respond), and they measure what's called the 'come down' meaning after the 6 minute walk, you sit down and they see how long it takes for your heart to reach it's beginning 'baseline'.  This can take up to 6 minutes to happen.  For me, it took 2 minutes, which is awesome! She measured for 3 minutes to be sure that it would stay at that rate and it did. 

These are all good things.  If I do as well on the Echo and the Pulmonary Function tests, then I will get my medical clearance, and things can more forward.  I was also given two puffs of Ventolin throughout this test, since I was prescribed it, once upon a time, and they wanted to see how big a difference it made.  It did make an impressionable difference, so these are all things the Anesthesiologist will need to know before 'putting me under', so I will be given some Ventolin before I go into surgery. 

Unfortunately, my pessemistic attitude can't help but wonder the other possibilities, and it's more than that.  She told me to sign an authorization for my insurance, to approve (I forgot the name, and hopefully, I won't need to know it!) another medication, in the interest of not wasting more precious time, for more medication that I may need.  These last 2 tests are the most crutial ones.  Because PAH shows it's damage in the heart, moreso than in the lungs, and these last 2 tests are testing my heart.  They will be able to get an idea of my heart function through these tests and see the Viagras full effects.  If those effects are not enough to certify me for clearance, than I will be taking this new medication, and in three months time, I will have to get another heart catheterization done.  I really hope that this doesn't happen, and I feel like it's what's going to happen, since they're already having me sign approval's for more medication, I almost feel like I'm being resigned to this fate.  She didn't know that her 'medical approval' for surgery will be the vital kick-off to start the surgery that I need to prolong my life (I hate saying 'save my life', because no life can be saved, death is inevitable, it can only be prolonged, no matter how old you are, and whether it's prolonged for a minute, or fifty years). 

It all boils down to how well I do on these two tests on the 26th and I'm chewing my fingers to stumps till then!  On a different topic, I have my son staying over right now, and he's been bugging me to watch this new xbox game that he borrowed from his friend, so I'm surprised that I've been able to gather my thoughts for this long!

So, I'll check in (maybe) before the 26th, even though, most likely, when I get these tests done, they won't let me know how well I did on them until the 29th, when I get a phone call from Mt. Sinai probably telling me that they're sending the prescription electronically to my pharmacy!  I hate to sound so pessimistic, but I feel like that's what is going to happen.  Anyways, she's not going to be in on the 29th, which is when I was originally supposed to see her, not yesterday, and she's just left instructions to her PA (Physicians Assistant) on how to handle this when the results come in.  I'm keeping my fingers & toes crossed!  Till next time...

And the Chaos begins...

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Well, yesterday I went to Mount Sinai for a Pulmonary Function test and it went very good.  I have three tests to take, all to see the status of my Pulmonary Arterial Hypertension.  So, the deal is, once I have 'medical clearance' to undergo surgery, then I can get on the 'active' list, my living-donor-to-be (hopefully!) can get screened, which only takes 2 weeks to do, and the gears can be set in motion as to a date of when my transplant will be.

Now, most people don't have a scheduled 'date' as of when they're going to get their transplant, if they're getting on the 'active' list and have to wait for a cadaver organ. Fortunately, even though the liver is a vital organ, it regenerates, as most of you already know, and half can be taken out of someone, which is called a 'Right Lateral Hepatectomy', meaning that 40% of their liver, in the right lobe, will be removed.  Now, the liver is made up of two lobes, the right and the left.  What I didn't know, is that once someone gets a hepatectomy, and their liver will regenerate, the right lobe that gets removed does not grow back.  What grows, is the left lobe, and it grows to 90% of the right & left lobe combined, so a living donor will only have a left lobe, but a very large one.  And I, will only have a right lobe, but a very large one, as well.  This anomaly does not hinder the function of a 'normal' liver. And when I say 'normal', I mean the one you're born with (a right & left lobe).  Also, for those who become living donors, must get their gallbladder removed, since it's in such close proximity to the right lobe, which isn't really a big deal, I had my gallbladder removed laproscopically in 2006, due to 'sludge' that was accumulating in my gallbladder and causing me pain when I ate. 

Whew, my ankles are itching like crazy! I fear that they will start to bleed, or worse, swell up again. I'm scratching so much, they're scabs formed and I can't scratch those, because then I'll start to bleed like a stuffed pig!  I see my ankles everyday, but I do think they are swelling a little bit.  It's not just my ankles, though, I'm itching all over, it's driving me mad!  Anyways, I take the two remaining tests for medical clearance on the 26th of this month, and those are the two test I fear I won't do so good in.  It's an Echocardiogram and a CAT Scan of my heart.  When I had the Heart Catheterization done about 6 months ago, it didn't look good, or that was the impression I got from the Dr.'s.  So, after I get these two tests done on the 26th, I see the Pulmonologist on the 28th, and she will look at the results of all three tests and determine if I'm fit for surgery.  If she determines that I'm fit for surgery, and gives me medical clearance on the 28th, I will then see my Hepatologist shortly thereafter and I will be put on the 'active' list.  Once that happens, my living donor can be screened.  She will have to go to Mount Sinai for two days.  Day one is screening on blood type (which I know is compatible), going over any previous medical history (and this person has no prior medical history, which is more than I think a lot of people can say!), and an EKG, and blood work to rule out any diseases that would make her unfit as a candidate.  Once that is done, and everything comes back good, then she'll have to go in for Day two of screening, which is more intense things, such as MRI, Ultrasound of the liver, CAT Scan of the liver, viewing the arteries of her liver to see if they would line up correctly with mine, and this all takes two weeks.  She also would be speaking to a counselor that would be assigned to her, to ensure that she's doing this on her own free will, not being  coerced in any way, and that she's aware of the risks, and that she's doing this voluntarily.  That's the part that I'm most afraid of.  I've tried to educate her as much as possible to make sure that she's fully aware of what she's getting herself into, and if these are risks she's willing to take.  Now, she's family and I will always love her, regardless.  However, I'd be lying if I said that I knew she was a match, then decided that the risks were too great for her and for that reason, she decides not to go through the procedure, which I'm sure happens at the clinic a lot.  This is why it's pertinent not to put all my eggs in one basket, so to speak.  Another family member has offered to be screened, if, for any reason, this does not happen with the first person getting screened, but she's had prior liver problems, and I don't think she'll be able to donate.  I spoke to my Dr. about it, and he said she'd have to get a liver biopsy done first.  It's also my job, as the recipient, that the donor be fully informed of what they're getting themselves into, and be prepared for it.  I feel like, if anything, I'm discouraging people from wanting to be my donor.  I just feel like I don't want anybody to risk themselves for me.  I know I can't keep thinking this way, it's just negative thoughts, but, in a way, it's also the truth.  Mount Sinai has done many successful living donor transplants, and the chance of things going wrong for the donor are slim.  This is why a potential candidate must get heavily screened, to ensure that the procedure will go well for them.  This is not something that should be rushed, whatsoever.  It's strange that I'm discouraging people to get screened just because I'm the only one who's benefiting from this...certainly not the donor!  It's not going to be easy for me, though, and I know this.  I just feel like, if anything goes wrong with me during the transplant, I would hate to leave that burden on the person who risked their lives for me...all in vain.  People do die during transplantation, it's not that rare an occurrence.  In the booklet "What Every Living Donor Needs to Know!" says in the 'psychosocial effects' section is "Would you be able to accept that the recipient may die during surgery?  Not only do you have to deal with the grief of losing that person, but you have to focus on your healing, as well."  Now, these were some really tough things to read and think about, being that the 'recipient' is me!

I guess these are just things that they have to let the living donor know, but I must stay positive and pray that when my day for the transplant comes, I will be waking from the procedure!  I can't think any other way.  But, before I go into surgery, there will be a room for all friends & family of mine to wait in, and I would like to speak to them before I go in.  I can only imagine what kind of a talk I will have with everyone who would be there.  I know it will be in my head that these may be the last words that I say to my loved ones.  The operation is 6-12 hr's, and a Dr. will come out periodically to let my family know how the surgery is going.  And I expect most of my family to be there, as well, to keep abreast of what's going on.  All I ask, is that I wake up to lots of flowers in my recovery room!  I would like that a lot!  To wake up and smell fresh flowers all around me, inspiring me with the scent of life!

Till this point, I've been very impatient on getting this transplant over with, but now that it may be so near, I feel like things are happening so fast!  But I also feel like it's taking forever, it's hard to explain.  I've been living with Cirrhosis for 4, almost 5 years now, and it's only gotten worse over that period of time.  It'll be such a relief to know that once I get my transplant, I will no longer have this accursed Cirrhosis!

Well, that's all for now, I will write to let you all know how the two tests go on August 26th.  Till next time...

A little more on the beginning...

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Well...even though my intro looks fine & dandy, I've gotten a lot of compliments on this site (thanks 2 u all!), but I'm gonna start from when it started..it came from a bit of thinking WAY back on a time when I didn't know what Cryptogenic Cirrhosis was...someone I sent a message to who's read my blog, as well, who is a recepient of a liver, said I was handling this in a very positive way for all that I've been through...this is the message I wrote him... He said surprised how well I'm handling this for someone who's been 'through the ringer' so to speak by Dr's! My reply was thus, w/my added comments I now tell you from the beginning:
Thanks! Not to say I'm an angel...I freaked out...I cried like a baby...having all of my 'past deeds' thrown in my face, having 'strangers' I didn't even know determining if I was 'worthy' of a liver and life, telling me that there's ppl out there who ...have NEVER had substance abuse prob's & need a liver, so why should I get one, even though I've been sober for a year? It made me feel like they were playing God w/my life! These are things that I can't think about because everytime I do, I cry...& it will destroy me from the inside. My counselor tells me, 'You have a yr sober...all u can do is look to the future' and I told her 'But I DESERVE THAT CHANCE TO HAVE A FUTURE! I HAVE A 10 YR OLD SON WHO NEEDS ME' and I just couldn't keep control of myself...so...being raised 'strict Catholic' having religion shoved down my throat during my youth, when my dad died when he ws 43 yrs old & I was 12, I turned rebelious. I cut off all my hair, started doing drugs and realized I was believing in a 'God' that I didn't even know...was just a name....he didn't exist. Throughout the rest of my yrs until VERY recently...I've found my Catholisizm again, & I don't question it, because I NEED IT! I need that faith to wake up in the morning...2 keep going! Whew! That was hard!! My face is all wet!
Now, I just cut & pasted that! I will gve u a lil more background. In about 2006/7ish, was told my ALT, AST & Alkaline Phosphotase were VERY HIGH & I would need to see a GI Dr. In 2006 (which may have been unrelated) I had my Gallbladder removed due to 'sludge'. Was havin pains everytime I ate, first I thought it was the foods I was eatin, so I cut out the fried/unhealthy junk...then I noticed a glass of water & slice of bread was doing the same thing...so I reluctantly went to the Dr. They did an ultrasound. I was sent a letter saying "You need to be referred to a ___surgery___ Dr. & the word "Surgery" was written on a blank line in ink. Hmm?? Freaked out for 2 wks, they wouldn't ans any questions on the phone when I asked "Wht surgery Dr? Wht did u find?" I'm thinkin the worse. Cancer? Tumors? So I went to the appt, Dr said I had sludge in my gallbladder...could give me prevacid, tht would relieve the symptoms, but the sludge ain't goin anywhere & at a young age (26), he recommended I have it removed, it would be better to have it done elective, while I was 'healthy' rather than if it swells or gets worse, which he said in time, it will. I figured...makes sense...no biggie...they did it laproscopically...I healed nicely (Kinda freaked when i saw staples & a scar btwn my boobs(lol!) But things were good....or so I thought. Dr. told me everything inside me looked good, liver was nice, smooth & pink...all was well, I healed. about a yr later, my AST, ALT&Alkaline Phosphotase were VERY high (I rmmbr the Alkaline Phosphotase were 1,098, norm being 40-150, they thought it was a test malfunction, false result, did it again, it came back 998) was told to see a GI dr., did tht, got the MRI, ultrasound, couldn't see nuthin, just tht my liver was enlarged, didn't know why. (noticed a lil belly) then...got the biopsy, was told it would answer ALL MY QUESTIONS, I WOULD FINALLY KNOW WHT THE BLOOD TESTS REFUSED TO TELL THEM! That was AWFUL!! I remember sayin, "If I ever need another liver biopsy, I'll jst let myself die first before going through that again!" Was all anxious to know the results of biopsy, results said "Transition to Cirrhosis stage 3/4 modified Isaac's scale, fibrous septa, CONSISTENT W/CHRONIC HEP C" The GI Dr. tells me "ur biopsy raises more questions than answers" I'm like...WTF? He said he sent my blood work to 3 different labs...& the HCV test comes back negative, always has...even though I knew I had the Hep C antibodies(?) but NO VIRUS! I couldn't even transmit it, I was told...I had NO VIRUS...tests just reacted when tested for Hep C. He said there's a piece of the puzzle missing here, & he can no longer help me, I needed a liver specialist. Funny, cause he referred me WAYYY BACK THEN...IN 07 to the Dr. I'm seeing now, Dr. Schiano at Mt Sinai, he told me 'If u got liver disease, there's no better place to be" Called to make an appt, Dr. Schiano's sect's said "We don't take ur insurance...BYE!" Called my insur, got the 'run around' saw a Dr. who didn't know her ass from her elbow, started me on Diuhrettics (Lasix 20mg&Aldactone 50mg...WHICH I STILL TAKE TODAY! Was told that's a baby dose, I need more, the only reason my ankles & feet went down, u know, fr the pic in my blog, is cause my Dr. told me to DOUBLE the dose! I did, they went down, she said to go bck to my original dose) Went to Woodhull after seeing this 'private' Dr. for a while, got all the new tests (MRI, CAT, Ultrasound, etc), felt like "Why is this taking so long? The hepatologist, Dr. Nora Bergasa, was only at Woodhull on Mondays, so seeing her was far & few btwn." Wasted over a yr on seeing her, she finally had the pathologist who looked at my 07 biopsy & she told me "You don't have hepatic cirrhosis...nor do u have Alcoholic, Billiary, Auto-Immune, or ANY other kinds of Cirrhosis, we destroyed ur samples ruling those out...U have Cryptogenic Cirrhosis" I was like...YES! FINALLY A NAME TO WHT I HAVE! Googled Cryptogenic Cirrhosis only to find out it means "unknown Cirrhosis" GREAT! Finally, I got so sick& tired of waiting months to see this Dr. & she called me & said "I'm sending u to the Mt. Sinai Recanti/Miller Transplantation Center" (I would argue w/the Dr's at Woodhull "Wht's going on? I've been coming here for like over a yr...& YOU'VE DONE NOTHING!" The Dr. said "Get another MRI...then we will refer you to the Transplant Clinic, if u don't like that decision, seek a second opinion!" Like my insurance is gonna cover all this nonsense & surprisingly it did, but I went to Mt. Sinai) Dr. Bergasa told me "I have all of your records, I'm calling Mt. Sinai, sending them ur rec's, along w/my personal authorization as cheif of medicine at Metropolitan Hosp that u need a transplant" So, May 26, 2011 (3 days b4 my 30th b'day) I had my 'initial interview' where I cried in a room for like 4 hr's...telling of my med hist, they felt my spleen..I can actually SEE IT through my skin, all u gotta do is touch my skin & it feels like a rock underneath! Oh...Feb '11, was hosp for Ascites& trouble breathing, found out I had Pulmonary Arterial Hypertension, was referred to Belleview to get a Right Heart Catheterization...saw the referring Dr's at Woodhull...like 3 Cardiologists come in...frantically talkin, freakin me out! Tellin me of my PAH & how serious it was to have this PAH & Liver Cirrhosis) so, May 26, got the great news all about liver transplantation...left there feeling like an empty corpse w/no soul inside me...numb. So, I go to my appt's, right now, my PAH needs to be sorted out, got on Viagra for that, gonna get these 3 tests done (non-invasive... CAT scan, Xray & breathing test), got a MELD of 12 but the Pulmonologist at Mt. Sinai told me "ur DEF not a 12, ur PAH makes u a much higher risk".

I've accepted all this that I've been through. I don't have a choice. I have a 10yr old son & history is NOT going to repeat itself, my son WILL have his mother see him graduate high school, unlike my father's passing when I was 12. And the battle goes on...