I've been hesitant to say who my living donor is going to be, and I'm going to keep this person's anonymity, at least, for right now. This person has already had blood work, and is a match, and goes for their screening, which is going to be all day, both days, on Monday and Tuesday, the 12th & 13th of March.
I'm not nervous that this person will not be able to donate, because I'm sure they will, but it's just scary having someone put themselves in jeopardy, not really in jeopardy, but to go through an operation, for me. I really wish there was another way.
I spoke with the surgeon, who was a very nice man, and he told me that even with a MELD score of 22, which is what it's currently at, I wouldn't get a cadaver liver anytime this year, and more than likely, my PAH will not maintain it's current levels, which is what makes me medically cleared for surgery. What makes a liver transplant more dangerous, is the fact that those who get a cadaver donor are very ill by the time they have their surgery, and if you're very ill for such a serious operation, then the chances of having something go wrong are much higher. By getting my liver transplant now, the chances of success are far greater than waiting until all of the horrible illnesses that come from liver disease happen.
So, I'm pretty much on pins & needles until Tuesday, which is when I'll know if this person is going to actually be my living donor. I sure hope so.
On the brighter side, I've been taking yoga classes, and they've really been working wonders for me. I'm also pleasantly surprised that I'm more than able to do everything that everyone else does, if not, more than the average student. The only 'limitations' that I thought I had, were the ones that I've put upon myself! It's also helped with staying smoke-free, which I've now been for over 3 weeks.
I will write a longer entry on Wednesday, after I know what happens with my potential living donor. Till next time...
I am a 31yr old Hispanic Female w/Cryptogenic Cirrhosis going through my Pre-transplant phase. This is for ALL out there who are suffering w/any kind of liver disease and wish to tell their story! You can contact me via Facebook or Twitter on the bottom toolbar. Also, be sure to click on the orange box that says "+Share" on the toolbar to share this page with your friends!
My Liver Disease Journey...
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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!
Thursday, March 8, 2012
My living donor...
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I wish you the best.
ReplyDeleteThanks! All things are going to be just fine
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