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, May 28, 2012

I have arrived! The wait continues...

I've been in Pompano Beach, FL for over a week now.  I will, briefly, say what's htrappened in the 10 days I've been here.  First, I was not Medicaid active when I came down here.  I had figured that would be the case.  I learned, quickly, that it's very hard to get around without a car.  This is something I had anticipated, but it's not that bad.  I've actually gotten a lot done in the short time I've been here.

I went to the Social Security office, and became a legal, Florida resident.  Everything to do with Medicaid is done online here, which is a good thing, but can sometimes be a pain.  I had to apply 3 times before finally getting a phone call interview to state that I was now Medicaid active.  Since I had Medicaid in NY, all I had to do was transfer my NY Medicaid to FL Medicaid, since it's illegal to have Medicaid in more than 1 state.  I've always thought that Medicaid was a government-run program, and, in a sense, it is, but it's done by state, something that I thought to be a little odd.  So, I applied not only for Medicaid, but for food stamps as well.  I've been approved for both, and strangely, I'll be getting a lot less than what I was getting in NY.  It's only temporary, so that's ok.

Also, when I went to the Social Security office, I found out that I'll be getting $24 less than what I was getting in SSI.  Strange, because I'm actually paying more rent here.  Again, all of these things are temporary, so it's ok.

As for Broward General Medical Center, where I'll be having my transplant, I've already touched base with them.  I didn't expect what was told to me, however.  There's a number of tests that are required for me to get, unnecessary tests, if you ask me.  The biggest one, is a Colonoscopy.  It's required by FL law that I have these tests done.  I've already had an Endoscopy, in February of 2010, which is sufficient for the hospital here.  They've been faxed a phone book sized papers which contain all of my medical records.  A few were missing, but they were quickly faxed over.  I also need a CAT Scan & a Mammogram.  What's so surprising to me is that I'm so accustomed to hearing this kind of news, having to take very invasive tests.  But, I've never had a Colonoscopy before & I was hoping for it to stay that way.  But I've came too far now to back out over something as minor as a test.

So, I was thrown a little curveball, but it's only setting me back a week.  My FL Medicaid won't be active until June 1st.  That's how Medicaid usually works, on a month to month basis.  That means that I must wait until June 1st to get the Medicaid approvals for the Colonoscopy, Mammogram and CAT Scan.  I also need to have blood drawn, and an ultrasound.  They cannot submit the approval until I'm Medicaid active.  It takes about 1-2 days to get the approval, and once the approval is in (most likely by June 2nd or 3rd), I can schedule these appointments.  They will expidite the appointments for me, and, realistically, I should expect to be listed in 3 weeks (sometime around June 14th).  I was hoping to be listed sooner, but it's not that big of a set-back.

I've already received my Medicaid & food stamp EBT cards, which is something that other people wait months for.  Once I'm listed at Broward General Medical Center, that's when the time starts.  Like I've said in previous entries, the wait time here is very short, hence the reason that I'm here.  It'll probably be a month, maybe less.  However, it could take up to 6 months, although I was told that people never wait that long.  A few good things are on my side, however.  Such as (& it may sound cruel, but this is the way it works) the 4th of July is coming up and there's a lot of fatalities from car accidents here during that time.  There's also boating accidents, and other ways that people meet their unfortunate early demise.  But they're giving the gift of life to so many other people.  That's priceless, and speaking for myself, I think there's no better way to honor a loved ones death by donating their organs to those who would die without them.

When I first arrived here, I was very distraught.  I just felt so out of place here & the reality of the situation really hit me hard.  It's finally going to happen.  I'm getting my liver transplant that I've been waiting 6 years for.  My life is going to change in ways that I would never be able to anticipate.  I just want this over with, and I feel like I'm in commando mode.  Just going through the motions to get this done & live a life that I'd like to live, free of liver disease.

I know I said I was going to keep this brief, but there's so much that I've been feeling, and so much has happened, that I just had to get it out of me.  Yes, I'm scared (which is a questions that I've been asked many times), but I'd also feel relieved once I'm post-op.

I think when I first got here, I was feeling very homesick & lonely, too.  My family & friends have mailed out birthday presents (my birthday is tomorrow, and I'm going on a charter boat to fish.  They have huge fish here, and of many different variety), and I've mailed out postcards to some friends & family members.  My boyfriend already bought his plane ticket for June 8th-15th & I can't wait until he gets here!  Also, my son & his father are coming down for his birthday, July 1st.  There's a grill here that works great, as well as a pool, so I'm pretty sure that he'll have a lot of fun when he gets here.  Friends & family is all I got right now & it's all I need.  I need the support of my friends & family right now more than ever.

I'm going to end it here, and as of right now, my internet access is pretty limited (I've been using my Android phone & it's really proven to be a life-saver), but I also won a laptop on Ebay for a great price!  It's expected to arrive between June 2-4th.  Once I get that, I'll write a new blog entry.

I'd just like to take a moment to thank everyone who's helped me through these hard times.  Your love & steadfast support has been vital to me, and I appreciate it more than words can say.  Till next time...