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!

Friday, October 21, 2011

What a bummer...


The MRCP was done, and I do not have PSC, and in a way, I'm really pissed about that, but another part of me is relieved.  It's hard to explain.  I'd have to say that I'm more pissed than relieved, though.  I'm tired of not knowing what I have, and how my liver became so messed up.

My Dr. said "20% of their patients have unknown cirrhosis, and it's as frustrating to them as it is to me".  YEAH RIGHT!  I highly doubt that.  I've subjected myself to countless MRI's, CAT Scans, an Endoscopy, a liver biopsy, blood work monthly, and we still don't know!?  I'm willing to continue with the 'process of elimination'.  I've already been through all of these test, what's a few more?  We know what it's not, it's not Alcoholic, Hepatic, Billirubin, Auto-Immune, and now PSC, so let's keep going.  If we keep excluding the types of cirrhosis, whatever is left must be the cause.  Let's start thinking outside the box.  Let's not exclude things just because it happens mostly to males, or those over 40, cause chances are, it's probably something so rare, that my Dr. isn't even considering it as the cause for my cirrhosis.

On another subject, my fundraising is going very well, and for all those who don't know, I'm fundraising with NFT (National Foundation for Transplants) and the link can be seen here.  I've already raised a nice amount, but nowhere near what needs to be raised, if I'm to have a successful liver transplant.


I'm selling feather extensions (as seen on the left) for $5.  I have two different kinds, as you can see.  One set is 16 inches long, the other's are 5-8 inches long, and if you live in Brooklyn, NY, I can put it on you very easily, if you don't live nearby, I can ship them to you anywhere you are (please let me know location, and I will tell you how much the S&H will be).  I should have them in my possession in 2 weeks.  You can send me an email on which one you would like, which color you would like from the selection in the pictures, donate $5 per extension (if being shipped, contact me first, so I can determine the total of your order, go to the NFT donation website here and put in the comment 'Feather Extensions', make sure that the donation is "In Honor of Victoira Santiago", I will be notified that the donation has been made and will ship them out.  I will start taking orders once they arrive, which should be soon, which I will put on my Fundraising site, which is here.

So, that wraps it up for now, for all those out there, if you haven't sent any appeal letters, or shown the fundraising site to others, please do as soon as possible.  The web address is: www.transplants.org/donate/victoriasantiago
Ok, till next time....

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