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!

Wednesday, August 8, 2012

Cut my losses?

I'm extremely disappointed at how things have turned out in the last few days.  I'll fill you in on that now.  I've done everything that I was asked to do, in order to get listed here in FL.  I've done the colonoscopy, 2 mammograms, seen a Pulmonologist, got dental clearance, and saw a psychiatrist, yet again, to get psychiatric clearance.  All of that has been done.

Finally, I go to get listed, and I'm now listed with my biological MELD of 8.  What the surgeon is concerned about now, is the steady decline in my MELD score.  The MELD usually gets higher, not lower, over time.  He now wants to know if my PAH is due to the liver disease, if they're linked in any way, or if I have PPAH, and not APAH (Primary Pulmonary Arterial Hypertension, or Associated PAH).  He's now telling me that since my MELD is getting lower, that there's no urgency to get a liver transplant.  I do understand his viewpoint, however, it's pretty irrelevant, since it's already been determined that I do need a liver transplant.  The whole 'when' point, is one that we're seriously butting heads on.

I may not be dying right now, and my liver is obviously still functioning in a limited capacity, but the heart of the matter is that I came to FL for the sole purpose of getting my transplant faster, as opposed to waiting in NY.  I'm still listed with my upgraded MELD score of 22 in NY, and I'm actually due for another heart catheterization if I wish to stay listed in NY, and have my MELD upgraded, once again, to 25.  I've asked Mt. Sinai if I was to get the heart catheterization here, if that would be sufficient to have my MELD upgraded again.

So, the surgeon here in FL, wants me to see a PAH specialist, which I've got no problem doing, but he's not going to even attempt to have my MELD upgraded here in FL.  That's going to take, yet again, more time.  I now have an HMO, so I must see my Primary Care Physician to get a referral to see the PAH specialist, and then I can make an appointment with the PAH specialist, where I'll be evaluated as to whether my PAH is Associated (which it most likely is) or if it's Primary (if it were Primary PAH, than I'd need to be on a lot more stronger medication.  Mt. Sinai has accepted the fact that I have APAH, so that's good enough for me).

If it's PPAH, than a liver transplant can actually cause more harm than good.  It can actually cause death during the transplant.  I really wish that I know someone who's had PAH & a liver transplant, just to know what it is that they had to go through to get listed.  Anyways, the way that I see it, is the PAH Specialist will, most likely, want another heart catheterization.  If that's the case, than will I get listed with my upgraded MELD in FL?  Probably not.  I'd probably have to wait until the heart catheterization is performed and the results are in.  The question that I've asked Mt. Sinai, is that if I get a heart catheterization here in FL, and if they fax the results to them, will that be sufficient to have my MELD upgraded yet again, in NY to 25?  If so, than it's probably worth it to get the heart catheterization done here in FL, because not only will I finally get listed with an upgraded MELD, but I'll be listed in NY with an upgraded MELD, as well.  The problem is:  Can I tolerate staying here that long, alone?  I'm not so sure anymore that I can.  I told the surgeon that I was planning on being home in time for Thanksgiving and he said that's an unrealistic expectation.

What I see happening here is that the rules seem to be changing every time that I go to the transplant clinic.  I was asked to see a Pulmonologist, and I did, and he said that I'm still medically cleared for surgery.  Now, he wants me to see a PAH Specialist.  I've got no problem doing that, but I'd rather get listed with my upgraded MELD score now, rather than later.  I mean, what is the PAH Specialist going to tell this surgeon that he doesn't already know without performing numerous tests on me?  Then what?  I'll have to wait until all these tests get performed and the results come in?  It's just something that I can see going on & on.

Regardless, I'm not leaving FL as of right now, due to the simple fact that I've already paid to have dental work done, and it's getting done as we speak.  Rick Hirsch has been on vacation and will not be coming back until Monday, the 13th. I'd really like to have a little talk with him about all of this.  I'll know a lot more in 2 weeks, as to what's going on and a better time frame of how long I would have to be here in FL until I get listed with my upgraded MELD, and once upgraded, how long will it take until I get called in for my transplant.  I'm pretty much 50/50 as of right this moment.  I'll know more in 2 weeks, and I'll write another post then.  Till next time...

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