My Liver Disease Journey...

Just to give everyone a gist of what kind of a blog I'm trying to create here, it's basically for people who have been diagnosed with Liver Disease (Cirrhosis, Cancer, etc) and are awaiting a liver transplant. I am sharing my story (like an open book), and keeping this also as a 'journal' for what I am going through due to my illness and my life & past experiences.
My name is Victoria Santiago and in 2007, I was diagnosed as a Cirrhotic at the age of 26 yrs old; I am now 30 yrs old. This blog is for those who know what having liver disease is like; the Dr appt's, the freaking out when Dr's can sometimes be so cold & rude in telling you that you're probably going to die from this disease. I walked into my GI (Gastrointestinal) Dr's office, got a liver biopsy done because I noticed some distention in my belly and my AST, ALT & Alkaline Phosphotase came back irregular, which are all liver enzymes. I walked in to try to find out what the heck was going on, and he assured me a biopsy would give me that answer. For those who have had Liver Biopsy's...I feel your pain! It's awful to lay there on your side having a HUGE needle poked under or in between your ribs TWICE for a liver sample. Well, my results raised more questions than answers. It was determined by the pathologist that I had a transition to Cirrhosis, and was consistent with Chronic Hepatits C. However, my blood work shows, from 3 different lab's, that I was diagnosed with Hepatitis C, but I have no virus, the HCV test always come back as "insufficient or mutated virus" meaning that there is no Hepatitis C virus in my blood; I was even told that I can live a long and happy life without ever having it's effects. So I knew this pathologist made a mistake in that diagnosis, and future Dr's whom are liver specialists concurred. I went through a whole mess of 'liver specialists' for year's, seeking a specialist that would take my insurance, which were few & far between. Long story short (too late!lol), I just started going to Mt. Sinai Recanti/Miller Transplantation Institute about a month ago. I also have Pulmonary Arterial Hypertension (P. A. H) and am seeing both a Pulmonologist & Cardiologist (had to get a Heart Catheterization to determine the condition of the P. A. H earlier this year) and I saw them for the first time on July 11th. I would like for everyone who are or has gone through transplantation to share their stories here for moral support (which helps both you & me, for there is strength in numbers), informative links, websites, and help in obtaining what we need and what is out there for people like us. This is by far the biggest threat I have yet to deal with, and being a rape 'survivor' from the age of 18, a former drug/substance abuser that led to the loss of so much of myself, my dignity and self-respect (currently celebrating my first year in sobriety, makes things even harder, but it is getting better with time), is saying a lot. Fact being, I'm a mother of a beautiful son, a daughter of a caring mother, an aunt to 5 precious girls, and a sister to three brave women. Granted, I've made some awful mistakes that I may pay the ultimate price for, but no one is perfect and no one deserves to go through all of these awful things in life, but to have to go through them and learn nothing...well, that's just not very smart! Believing in God has helped me A LOT and strengthening my relationship with Him has not been easy, but I would be lost without my faith. Even though I have family support, it's hard for them or anyone to understand what kind of pain I'm going through, except those who are going through it, and even then, everyone has their own unique story in their 'path to recovery'. I'm inviting those who wish to share their story, wisdom, and strength with me, on my blog. Thanks for reading & please feel free to share your story with me!

Saturday, March 17, 2012

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...

Thursday, March 8, 2012

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...