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...