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, July 8, 2011

More Appt's & MELD & grt links...



Well, I am going to see the pulmonologist & cardiologist at Mt. Sinai Recanti/Miller Transplantation Institute Monday, July 11th. I LOVE Mt. Sinai because EVERYTHING is centralized there. They have all medical specialists to deal w/the problems that come from Liver/Kidney Transplant patients. It's great, cause I'm so sick of being the 'hot potato' of other Dr.'s. I've been referred to so many Dr's so many times, I've lost count...all I know is I've been being tossed around since 2007, and I've had my initial pre-transplant appt at Mt. Sinai on May 26th of this year! Anyways, thanks to all out there who have been helping me learn more about this & it just feels good to talk to others who knows what I'm going through. My Dr. also thinks this blog is good because it helps me spread the word of how serious Liver Disease is, and that it doesn't only happen to alcoholics, or people with Hepatitis, or the Elderly. Granted, I know that I am not a 'normal' Cirrhotic. Being a 30yr old Hispanic Female with Cryptogenic (unknown) Cirrhosis is not commonly heard of.
Once I go to this appt for the Cardiologist & Pulmonologist to review my Pulmonary Arterial Hypertension (PAH), which can be shown in detail on the Heart Catheterization I had done on March 13, 2011, which I do know came back prertty bad, my MELD# will go up and I will be continutally seen every 3 months to evaluate what my MELD should be.

However, I found some good links for those with Liver Disease: http://healthtools.aarp.org/adamcontent/liver-disease This link shows you about ALL TYPES of Liver Disease

http://www.allabouthepc.com/hepc/index.jsp This link shows ALL YOU NEED TO KNOW about Hepatitis C

http://www.nlm.nih.gov/medlineplus/ency/article/002441.htm This link can be followed via Twitter and shows the diet someone with Liver Disease should follow and it also explains why you should follow that diet, which I really like! I don't like being told what to do without explanation, I don't think anyone does! lol

Well, that's all for now, hope everyone is well! I will post late Mon or Tue and write about how the Appt went. I will know my new MELD# 2 weeks after this appt, but I'm pretty certain it will go over 15, so I can get on the 'Active' Liver Transplant List. As of right now, I am on the Transplant list, just not the 'Active' transplant list, but after Monday when the Dr's evaluate my PAH, that will all change. I know the Dr's objective is to 'run out the mileage' on the liver I have now, which is fine; however, I just want to get it over with at the same time. I've already experienced most of the effects of Liver Disease, not to mention effects of the PAH, which includes blackouts. This is no way to live & I do get frustrated that nothing can be done to counteract these symptoms. This all goes with the territory of having Liver Disease, so these are things that are out of my hands and I have to trust it into Gods hands now and I will. Well, have a blessed weekend, everybody, and ttyl!
Posted by natwillsbrg at 12:26 PM
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