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, April 10, 2013

What's been going on...

Well, it's been a long time since I've posted an entry here and that's because there's really nothing I have to say.  No good news, in fact, quite the opposite.  I've been taken off the list in NY cause I've missed my doctor's appointments.

This was no accident.  At times, I feel like I want to get this over with, but as of late, I'm just really stressed out and have made some major changes in my life that take some getting used to.  I'm going to go back to the transplant clinic and get re-listed  but 'when' is the question.  I feel fine & I'm in no hurry to get a major organ replaced and, very possibly, bring about a whole new set of health issues that are worse than what I'm dealing with now.

While I've made a fantastic accomplishment, and by that, I'm referring to the fact that I've been off methadone since January 31, 2013, making it almost 3 months now.  Jeez...feels a helluva lot longer than that.  I've made the transition to get on Suboxone, which for the first week, I thought I was going to die, but I'm now well adjusted on my dose.  I get it from my PCP, so no BS clinic to go to, and I've started seeing a therapist, which I am hopeful of the outcome of that.  However, I've been on a pretty destructive path as of late and I'm really trying to control it and I refer to drinking.  At first, it was just a glass or 2 of wine on the weekends but it's now turned into a lot more, and that's just about the worse thing that I can be doing now.

So, instead of cutting me off from everything (by everything, I mean cigarettes, xanax, and the drinking) all at once, which would be extraordinarily stressful on me and could quiet possibly lead me to a very horrible relapse) I'm getting rid of one thing at a time.  I'm going to cut down on everything, then one by one, cut it out altogether.  I think that's the smart way to do it.  I cannot go back to the Dr if there's alcohol in my system and I know that it takes FOREVER for my system to get rid of stuff, so I'd give it a week.

On a better note, I'm going to an awesome concert, family reunion and Puerto Rico this July.  Since my son will be with me this summer, I'm very hopeful that by the time summer is over, I'll be rid of all these bad new habits.  My son gives me the strength that I need, strength that no one else can give me, cause he's the one who needs me the most.  Not that I'm unappreciative of well-wishers, but when it comes down to it, my death would mean nothing more than "Wow! It's a shame she died so young".  But for my son, it would devastate his life forever and that's something that I just won't allow to happen.

Well, that's about all I've got to say as of right now.  Till next time...