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, July 6, 2011

Those who have contacted me...



I would sincerely like to thank all of those who had sent me links, info, and other stories about people like me. I find it astounding that their are so many of us out there going through this same nightmare! But, I think it will give us strength & hope by sharing our stories with one another, be it if you are pre or post transplant. I have met a few people who are post transplant and I would like to know what I have to 'look forward' to. I know it's only going to get harder before it gets easier, but I'm at one of the best hospitals there is in NYC, and that's Mt. Sinai Recanti/Miller Transplantation Institute. They have EVERYTHING centralized in this one building on the upper east side & since I have Pulmonary Arterial Hypertension (PAH) as well, I am going to see the Cardiologist & Pulmonologist at the same time to discuss my PAH, which qualifies as a 'special circumstance' that will increase my MELD# which is currently at 12, but that is solely based on the 3 liver enzymes they check for. Once the Cardiologist&Pulmonologist look at my case & see my Right Heart Catheterization & Echogardiogram results I took, they feel that I need to be on more medication (sure, why not? I'm already taking 10 damned pills a day, what's more going to do!?). Currently, I am taking (believe it or not) Viagra for my PAH, since I am a Cirrhotic & I can't take any of the other medications that would normally treat PAH, and the Pulmonologist said that it's good that I'm already taking that, but she said I will need more medication & when I do see them July 11th, I will also tell them that I feel like my tummy is going to burst & I'm having difficulty in taking deep breaths. I'm constantly yawning, and this is due to the PAH because there is a lack of oxygen in my body, the Dr's could tell just by looking at my Catheterization results & my fingertips, which, they referred to as "clubbed" meaning that the nails grow kinda downward and my fingertips are more rounded at the end.

What I love about Mt. Sinai is that the Dr's there are like Teflon. NOTHING SURPRISES THEM! They have seen the worse of the worse & I had a HORRIBLE experience at a state hospital called Woodhull when I wanted to get the results of my Cardiac Catheterization, 3 Cardiologists came into the room and were writing frantically, speaking frantically, making me feel like I have the worse health in the ENTIRE WORLD. Mt. Sinai doesn't react like that. The Cardiologist I spoke to, he said "We would never 'freak out' like that in front of a patient, we know by the time people get to this Institute, they have been on a Dr. seeking roller coaster. I am not minimizing your illness, you do have PAH, it would be better if you didn't, but you do, so we are going to treat it best we know how to" That was comforting, but at the same time, it was a little disstressing to know that these 'teflon' Dr's have seen it all! Nothing surprises them anymore! Well, that's all for now, folks, hope all is well & please say a prayer for those who will never know what life is like w/o Liver Disease who are no longer with us. God Bless.
Posted by natwillsbrg at 7:33 AM
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