I've finally gotten my appointment for the final, and most invasive, test that's required of me in order to get listed here in FL. My colonoscopy is scheduled for June 29th, which is a Friday, so the following Monday, I'm going to call the Transplant Coordinator at Broward General Medical Center (BGMC) and an appointment will be made for me to see the surgeon that week.
The transplant surgeon is Dr. Selvaggi, who, to my relief, is an excellent surgeon. He's actually the main surgeon for me, as they'll be 4 transplant surgeons working on me during the liver transplant. Hopefully, I will get the call that I've waited 6 years for telling me to come in for surgery on the 3rd or 4th week of July. If that happens, then I will be coming home in October.
I shouldn't even be thinking about when I'm going to get the call, because it can take longer. I base this on the fact that a woman I've met here in FL had the same exact MELD score as I do, and she was called in 3 weeks after being listed for her surgery. She's now 2 1/2 months post-transplant, and doing very well. Her Dr. was Dr. Selvaggi & she asked me if I knew who my surgeon would be yet, and at the time, I did not. She did tell me that she'd hope it's Dr. Selvaggi because he's the best. I'm not so good when it comes to trusting Dr's, so I sure hope that he is the best.
On another note, my son, Jonah's, baseball team were playing in the Jr. World Series and he won!! I'm so proud of him, and he's so proud of the gigantic trophy that all of his teammates got. He's probably going to show it off to all of his classmates today! It's news like this that really makes me think "These are moments that are worth living for!" I felt so special when I found this out yesterday, that his team won the world series, but even more, I felt like it would be nothing short of criminal to miss out on these wonderful moments in his life.
I went to church this past Sunday, something that I haven't done in a very long time, and since it was Father's Day (by the way, Happy-belated Father's Day to all of the daddies out there!), and the Pastor said some very inspiring words. It really touched me and I left mass feeling at peace with myself. As I left mass, everyone was walking to their cars in the parking lot. As I'm walking, I see a wad of bills wrapped in a red rubber band. This woman behind me said "Oh, it's your lucky day", as if I was just going to pocket this money that didn't belong to me, after leaving mass feeling blessed & good about myself. Instantly, I thought to myself 'This is a test and I'm not falling for it!' So, I ran ahead and yelled to those getting into their cars "Did anyone drop money?" People shook their heads no after checking their pockets, and then one woman said to her elderly father 'Dad? Did you lose money?' The old man checks his pockets in his blazer that was on his arm, and I could tell by the look on his face that he had lost money. I asked him "Did you have your money in a rubber band?" He said "It's in a red rubber band". At this point, I handed him the wad of cash and told him that he should put it in a safer place. His daughter thanked me, as did he, and I felt very good about what I'd done. I felt like I did the right thing, and I know I did. I spoke to my Mom about it that day and she said "You don't take what doesn't belong to you. God was watching you and he's proud that you did the right thing." I couldn't agree more!
I've decided that I'm going to attend mass every Sunday, since, coincidentally, there's a Catholic Church literally 3 buildings down from where I'm living at, so it's so close. I may also go to confession, since it's been a very long time. The priest said some very touching things, things that he's experienced in his life that are almost identical to what I've experienced. He said that his father died when he was 14 years old, and the only sadness that he feels is the sadness that he didn't get to know him as an adult. I wish I could say the same, but there's a lot of sadness that I feel about my father. I'm sad because he died so young, sad because he never got to see me grow up, sad because he never got to meet my son and my father wanted a son more than anything. I've got a lot of sadness when it comes to my father. But, I've accepted this, and am moving on in the best way that I know how to. For a very long time, the only way I dealt with his death, was to not deal with it & self-medicate. Those days are long gone & I'm never looking back. So, I've got my own coping skills, skills that everyone should get while growing up, but that wasn't the case with me. No point in dwelling on the past, I've just got to look to the future. And I've got a lot to look forward to! 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...
Tweet
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, June 20, 2012
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment