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!

Monday, July 30, 2012

Seriously freaking out...

Here's a little update from today's earlier entry.  Broward General Medical Center just called me back, and I'm going in on August 8th, where I'll finally be listed.  However, I'll be listed with my biological MELD score of 9, then, most likely by that Friday, I'll be listed with my upgraded MELD of 22.

This is all very nerve-wracking.  Things are happening so fast.  This means, that in just 2-3 short, little weeks from now, I could be undergoing the most important surgery of my entire life; one that any human being should never have to undergo, and one that very few people have undergone.

There's a vaccine that I must get, I think it's the pneumonia vaccine, but the coordinator told me that it's actually a vaccine that's given only to people who are going to be on immuno-suppressant medication, since my immune system will be suppressed, so that my body doesn't reject the organ.  I also have to tell my dentist (and I'm certain that he's NOT going to be happy about this...possibly might tell me to get the hell out of his office) to write a letter, to the Transplant Clinic, stating that I have no loose teeth or open sores in my mouth.  I asked why this is important, and I was told this: "During surgery, if there's any loose teeth in your mouth, they could get knocked out and get lodged in your lungs.  The mouth is generally a dirty place to begin with, but if there's any open sores, than that infection will make it's way into your blood stream."

This is all so crazy!  The emotional part of me is screaming 'Go home!!  Get away while you can!  WTF are you thinking?' and the more logical part of me is saying 'Good.  Let's just get this over with already, before I change my mind'.

My whole life I've ran from problems.  I've seldom looked a problem in the eye, so to speak, and just dealt with the consequences.  It's almost like it's in my nature to run & hide.  I'm not running & hiding, and this is totally going against everything that I've ever done in my life.  If there was ever a time to 'run & hide', it would be now.  This is serious business.  I've had nightmares about this.  My life's been seriously interrupted by my health problems, and I've grown accustomed to it.  I try to think positively and tell myself that this is the beginning of a new life for me, a chance to start over.  I feel too old to 'start over'.  I've started over too many times already, put in half-hearted attempts at change, and for me especially, change is scary.  Fact is, I don't know what life's going to be like once I get my transplant, and that's uncharted waters for me.

Regardless of what's going to happen, I've just got to suck it up, soldier on, and get this over with.  I'll write another entry on next Monday.  Till next time...

No comments:

Post a Comment