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, January 27, 2012

Starting the Chapter...

First off, I'd like to say to all out there, I've hope you had a wonderful holiday, and may this New Year be a great one for you, as well!

So, the 'Jitters' are really starting to affect me now...it's no longer a fictional (not that it ever was fictional, but perhaps, now, it's feeling a lot more real..hard to explain) event, but it's actually going to happen this year, and I speak of my liver transplant.

Regardless of living donor's, or lack thereof, I will have my liver transplant this year.  As everyone knows, or if you don't know, now you do, I now have the medical clearance that I so desperately needed for my life-saving liver transplant.  I have already seen the Cardiologist & Pulmonary Department at Mount Sinai Hospital, and I'm going to finally continue with the process of getting on the 'active' list on February 2nd.  That's when I see my Liver specialist/transplant Dr.

I must say so myself, that the last week has given me lots of perspective, not just with my health issues, but with other issues as well.  I've been so absorbed in my health, that I've not been giving much thought to what life will be like after my transplant.  I guess, in simple terms, I still haven't decided what I want to be when I grow up! lol!  I think that I've came to two decisions as far as that goes that a) I wish to travel the world and see more of other ways of life and b) I wish to study more...and not just for 'financial' gain, but just for the gain of enlightening my mind.

I'm going on a cruise this May, on a better note, to the Caribbean via Carnival Cruise, for 4 days of some much needed R&R.  I'll be leaving at the port of Miami, returning at same location, to a private island that is owned by a band that I have highly admired throughout my life, 311.  I've never seen them play live, and they will be performing 4 shows during the Cruise and I will also get a photograph with the band, as well.

So, back to the topic of this particular blog, regardless of living donor situation, which may still work out, after all, if I've learned anything from all of this, I've rekindled my religious beliefs that I've abandoned for many years, that the Lord works in mysterious ways, and if it's meant to be that I must wait for a cadaver donor, then so be it!  My health is what's most important here, and in many ways, I don't wish to jeopardize anybody's life, even if they have the most honorable intentions.  I just don't think that it'll work out and I certainly can't use coercion or 'emotional blackmail' to have someone do something that they simply don't wish to do.  I should've really taken more consideration about that, and for that, I'm deeply regretful.  Even though my Dr has told me that a living donor would be an ideal situation for me, I think this is my hole, so to speak, and I've dug it and I'm not expecting anyone to dig a hole for themselves in helping me get out of mine.

The Dr says the my Cirrhosis is Cryptogenic, which, doesn't actually mean 'unknown' Cirrhosis, because that would be more like Idiopathic Cirrhosis, but it means that I have Cirrhosis and there is a cause for it, but that cause cannot be verified.  However, I'm pretty sure how my liver damage has occurred, as is my Dr, I'm pretty certain, which is due to my past substance abuse problems.  All of that is irrelevant, however, because the simple fact is that I have Cirrhosis, it's here, regardless of the source, and I'm in need of a liver transplant due to this.

So, I will close here by saying that I will keep all informed as to what happens after February 2nd.  Thanks for reading, as always!  Till next time...