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 13, 2011

The Route I choose to take...



Well...this is a VERY slow process, however, I do believe that I have found my living liver donor. She is aware of the risks, not to say that she's bound and has to do this, but she has agreed after all that I could explain about the risks to her. So, I'm writing this page because I think now is the time to start my fundraising. I've had a few offers from organization's who are willing to help me, I think $10,000 is my goal to raise. I've done the math, and her rent & bills for 3 months, not to mention the fact that she has 3 children and would need Child Care costs, Transportation, & whatever else is deemed necessary for her to live for 3 months after her donation. My insurance (it's NY Law) covers her procedure of getting the Hepatectomy, however, I do not wish for her to lose her job and have to pay money out of pocket for me, I think, as I think all of you will agree, that she's 'paying' enough! Her gift to me is priceless, it's the gift of life. So, I'm writing to all out there who wish to donate, they can contact me via email on the email contact form to the right of this message, any amount donated is sincerely appreciated, it is also tax-deductible. I will add another blog sometime soon when I get in touch with some organizations who the money can be sent to, and I am writing this blog for those organizations who wish to help me with getting this fundraising started. Out of respect for the donor, as of now, I am leaving her anonymous, she knows who she is, we have spoke all about this. Thanks for reading! Hope everyone else is doing better than I am! I've been feeling very nausea's lately and my feet are aching day & night. God Bless.
Posted by natwillsbrg at 8:41 PM
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