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...

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...

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 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...