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, July 13, 2012

Seeing the surgeon...

I finally saw the surgeon on Monday, and to be honest, I was very disappointed!  He wasn't the nicest guy I've met, and everything was going so smoothly until I saw him, Dr. Selvaggi (the surgeon who came so highly recommended).

First off, the colonoscopy went well, I've got no polyps or anything like that, so that's fine.  However, my mammogram didn't go as well.  I have to get a second, more detailed mammogram done because my results came back abnormal, showing that I have calcification in my breasts.  This is nothing to be concerned about, hopefully, but I can't really afford to dwell on that right now.

So, Dr. Selvaggi actually said to me "You're not the first person who came to FL shopping for an organ".  I couldn't believe a doctor would actually say that!  I've uprooted my entire life to come here, subjected myself to all of their tests and he was talking to me like I'm something stuck on the bottom of his shoe!

Regardless, he said that my psychiatric clearance was 'vague at best', which is SO untrue because I did get psychiatric clearance to be listed.  I wouldn't be listed with UNOS if I didn't get psychiatric clearance!  So, I've got to see a psychologist here, in FL, to get psychiatric clearance, once again, and I've also got to see a Pulmonologist so that they can overlook my recent heart catheterization results and confirm that Dr. Ajith Nair was correct in clearing me for surgery, which he is.

They referred me to these 2 doctors, and when I called them, not one of them took my insurance!  So, I had to do A LOT of footwork, and finally found a Pulmonologist & Psychiatrist who will see me on the 17th & the 19th.  The 19th is a Thursday, and I'm going back to the transplant clinic on the very next day, Friday, so that I can FINALLY get listed!  But when I finally get listed, it's going to be with my biological MELD score of 6!!  Then, they take my case to the UNOS (United Netword of Organ Sharing), requesting the MELD increase, just like Mount Sinai did.  That'll take about 4 business days to do & once I'm listed with my MELD score of 22, that's when I'll be getting a call PRETTY QUICKLY.  It could be a day, it could be a month until I get that call I've waited so long for.  So, my surgery will probably take place in August.

Other than that, I've also had some tragic things happen.  My 7 tooth bridge has fallen out, along with 3 of the 4 teeth that were anchoring it, so I now have NO front teeth!  I went to the dentist yesterday, hoping that they'll just pull these 'teeth', that aren't even teeth, they're just roots of teeth, and the scheduled my appointment for the 18th, which is HORRIBLE because on the 18th at 2:30PM is when I have to see the psychiatrist!  The appointment for the extractions is at noon, but I can get there at 11:30AM, but still, it's going to be horrible to go to see the psychiatrist, who has the power to NOT grant me psych clearance, with a mouth full of bleeding gums!

I've told the dentist that if anyone cancels their appointment, to call me ASAP & I'll take their appointment.  I'm hoping that'll happen.  If not, then I'm going to call the psychiatrist and explain to them what's going on, so maybe they can see me on the 20th instead.  I highly doubt it, but it's worth a shot.  I'm not going to call them until Monday, however, because I'm hoping that I'll get an earlier appointment for the dentist.

FL Medicaid is SO different than NY Medicaid & it SUCKS!!  They barely pay for anything and they don't have many doctors that accept Medicaid, and worse still, is that I've got to pick an HMO.  I'm going to try to call the Medicaid office to try to keep my straight Medicaid.  However, I've already called the Medicaid Choice line and they said that I'm required to pick a plan, and since 2 of my doctors take a certain HMO, I might just go with that one.  However, it won't become active until August 1st, and the dentist that I'm seeing does NOT accept any HMO plans, so I'd like them to charge everything before the 1st, like the extractions and the bottom denture.

That's the other thing.  FL Medicaid doesn't require any authorization for a full denture, but they require an authorization for a partial denture, which takes 6-9 weeks!!  There's NO WAY that I'm going to wait that long with no front teeth, so I've opted to pay for the upper partial, which is $750.  Thankfully, my Mom & Sam are going to pay for it, so at least I won't have to worry about my teeth for a while.  And I can still get dental implants once I get my liver transplant and get settled back in NY.

So, that's pretty much what's been going on.  I'm pretty upset that it's taking so long to get listed, but that's the hardest part.  Once I'm listed, then things will happen very quickly, and I should be listed by the beginning to mid August.  It's taken a lot longer than I'd have thought it'd take, but I'm almost there!  So, I"m just hanging tough until then.  Till next time...

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