I've seen the psychiatrist, here in FL on Saturday. He wrote a book, pretty much, but as I have said, he asked me "Why are you here? You've already got psychiatric clearance from NY." I agreed with his assessment, as it's true, but the surgeon insisted that I see a psychiatrist in FL, and even the psychiatrist, once I told him of my awful experience with the surgeon, agreed with me that this particular surgeon has absolutely no bedside manners, as a lot of surgeons do.
His conclusion is that I'm very well informed about my health condition, and I'm fully prepared to undergo surgery. So, psychiatric clearance has been, once again, granted. This was the last thing that was required of me to do prior to being listed. So, as of right now, all systems are a go!
As I've said in my previous entry, I will first be listed, here in FL, with my biological MELD score of 9 (which is nothing), and my case will be brought before the UNOS committee, and, legally, they've got 21 days to respond, however, the Transplant Coordinator, Rick Hirsch, said to me that he's never seen it take longer than 4 business days. Furthermore, he said that in my case, it'll be more simple for them due to the fact that my biological MELD score has already been raised in another state.
As luck would have it, Mr. Hirsch is on vacation until the 15th of August. There's someone filling in for him, but they're not fully abreast as to what Mr. Hirsch said to me, personally, but they can still do what needs to be done in his absence. What needs to be done, is basically having me see the wonderful (yes, I'm being facetious!) Dr. Selvaggi, again, showing that I've been granted (yet again) both medical & psychiatric clearance to get listed in the Great State of FL (again...I'm being facetious). I'll be listed, as of that day, only with my biological MELD of 9, and whoever is covering for Mr. Hirsch in his absence, will make the appeal to UNOS about having my MELD raised on the basis of my PAH condition. This should, hopefully, take no more than 5 business days after I'm listed. Once that happens (which will probably coincide with Mr. Hirsch's arrival back from vacation, then it's just a matter of getting that phone call.
I've been thinking a lot about that phone call. Whenever my phone will ring, my heart will skip a beat. I'm almost certain that those who've had transplants in the past have probably felt the same exact thing. I'll have a small bag packed with undergarments, a few personal effects, and toiletries, as well as medications (which are already in a big plastic bag). Then, I'll call a taxi, to go to the hospital where my life will change forever. On the way to the hospital, I'll call my mother, my boyfriend, and my very good friend. I've already decided that I won't call my son, as badly as I'd like to, for the simple fact that he's not in FL, there's absolutely nothing that he can do to help me, quite the contrary, he'll be unnecessarily traumatized. I'll call him after the surgery, to let him know that everything went all right, and that I'll be seeing him soon.
I've also thought about the whole '90 days' that I'm supposed to stay here, once I'm post-op, and I've decided that if I'm feeling better prior to these 90 days, then I'm going to go back home to NY. What can the hospital do? Take the liver back? I'm just so far from my family & friends that even my own mother told me "Do you know how hard it's going to be , for me, to just go home and leave you in FL while you're recovering?"
I don't know how hard it'll be, but having a child of my own, I can only imagine that it'll probably be the hardest thing that a parent can ever do. Perhaps not 'the hardest', but it's definitely one of the hardest. The simple fact remains though: I need this operation to save my life. There should be no weeping while I'm recovering, because my life is going to be so much better once it's all over. That's the way I see it, and I'd like to think that's the way my family & friends should be seeing it, too.
As for FL, I'd be lying if I said that I've grown accustomed to it here, because I certainly have not. Not to say, like my best friend told me, "NY is not the center of the universe. The more you travel & see other places, the more you realize that." However, NY is where my life is and there's no other place I'd like to be.
I'm waiting, at this moment, for the Transplant Clinic to call me back, to make the appointment to see Dr. Selvaggi again. The psychiatrist told me that they're going to have to type up all of his notes (which seems like quite a large task, since he wrote about 10 pages during the appointment) and once typed up, then he'll fax over his assessment of my psychiatric clearance. He told me this should be done by Tuesday, but I'm going to call today to see if it's possible for them to just fax a more basic letter today stating that I'm cleared for surgery, psychologically.
If all runs smoothly, then I should be listed, with my upgraded MELD of 22 by the 2nd week of August. It's exciting, relieving, and terrifying, all at the same time. It's out of my hands now, and into Gods hands, which is where it'll stay. Till next time...
I am a 31yr old Hispanic Female w/Cryptogenic Cirrhosis going through my Pre-transplant phase. This is for ALL out there who are suffering w/any kind of liver disease and wish to tell their story! You can contact me via Facebook or Twitter on the bottom toolbar. Also, be sure to click on the orange box that says "+Share" on the toolbar to share this page with your friends!
My Liver Disease Journey...
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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
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