Hi all, my name is Alexander, I'm 16 and live in Saint Augustine, Florida. I was diagnosed with Primary Sclerosing Cholangitis and Ulcerative Colitis at the age of 2, on December 5th, 1999. After waiting only 4 months, I received my first liver transplant on January 3rd, 2005 at the age of 7 at Cardinal Glennon Children's Hospital, in Saint Louis, Missouri (I was living in a small town 2 hours from there called Puxico at the time). Only 6 months later I was re-diagnosed with both diseases (this was during an operation to repair my perforated colon). After many attempts to slow the progress of the PSC (internal stints, external stints, different medications, Cytoxan infusions, etc.) I was put on the transplant waiting list for 18 months. Having applied to 4 different hospitals (Miami, Gainesville, Boston and Atlanta) all of which turned me away as I was "too high risk" and/or an "exceptional and strange case" I applied and was accepted by Children's Hospital of Pittsburgh in Pittsburgh, Pennsylvania. On February 7th, 2014 I received my second liver transplant. I am currently still in Pittsburgh, Pennsylvania, as many different problems have popped up.
I am very knowledgeable in symptoms and treatments of symptoms, so feel free to ask anything.
It's nice to meet you! Congratulations on your second new liver! Hopefully these problems get resolved and you get to head home soon. I'll keep my fingers and toes crossed for you. Please keep us updated about your condition.
I do have a question. Are you on vancomycin or have you and your parents considered using it? I hear it works pretty well for pediatric patients and I am interested to know what you think.
Hi LeggyMeggie, nice name by the way. I have been on vancomycin, numerous times, it works great for me. However, use with caution, I have lost nearly 75% of my hearing, not due to vancomycin, but amikacin, which, though not in the same class of drugs, are sometimes used interchangeably. I found that anything that ends in something sounding like "SIN" is to be used with caution. One their information pages, such as Drugs.com and Medicine Plus, it explicitly says "...used when other less-toxic medications administered little to no effect."
My mother is my rock. She has ALWAYS been there for me, words can't even describe how amazing she is. She's really the only person that's ever been there, the rest of my family isn't involved at all. I have come to expect little to nothing from them, as that is how it's always been for me. As for my mother, she feels the same way, however, she becomes more disappointed that I do. She says she doesn't care, but I know she does. As for school, I am lucky to have a very fine-tuned mind (if I do say so myself) and, at one point, was even a grade ahead in math. Because of the various medications I take, I can no longer attend school in the traditional sense. However, thankfully I live in the digital age. I take all of my classes online at F.L.V.S. (Florida Virtual School). Thankfully my mother has pushed me to complete work, even when I'd rather not. I cannot say that I did all of my schoolwork alone, she kept chugging me along, all the while being supportive and helpful when she could. I am happy (and proud of myself and my mother) to say that this year, on June 4th (my mother's birthday) I finished all 5 of my 10th grade classes with honors and "A"s. I myself am very motivated in school, something that IS A MUST in an online school setting. The teachers are also great. They understood that I was very ill and was trying my best, despite not having the correct materials. I am also currently the co-editor (along with my English teacher, whom I've had for 3 years online) of the F.L.V.S. (Florida Virtual School) newsletter.
Hi, Alexander, my kids are about your age, and they do FLVS, too. Congratulations on your achievements! I know from experience it takes a lot of discipline and self-mastery to do the coursework on your own. I have to do a fair bit of nagging sometimes. :) Your mom sounds terrific, and you yourself sound incredibly mature and thoughtful. I will look for you on the FLVS newsletter.
Gary Paulsen, the author of Hatchet (the first book in the Brian's Saga series) is my favorite author. He wrote anther great book, called "The Rifle". V for Vendetta is one of my favorite movies, along with The Dark Knight. Heath Ledger was the best Joker there ever has been and, likely, ever will be.
Hey Alexander – sorry you’ve had to put up with so much and congratulations on the new liver.
I think LeggyMeggie is asking if you have tried oral Vancomycin specifically for the treatment of PSC/UC as opposed to using it for knocking out infections. Vancomycin (and Amikacin) do not permeate the digestive tract, so when taken orally the nasty side effects associated with IV use are avoided. A number of studies have found that, particularly in the case of pediatric patients, oral Vancomycin when taken long term can be effective in halting/reversing the progression of PSC/UC.
HI dancermom, this is the only summer since 5th grade that I am not taking summer classes. If your son has not yet enrolled in the summer classes, I would recommend:
These are the three courses needed to be eligible for The Gold Seal/Bright Futures Scholarship (in addition to all of the normal courses such as English, Science, Social Studies, etc.)
Bright Futures is terrific, and I hope you get it, Alex. :) In our case, my son will have to scramble just to get the basics covered by August. English 4, Physics, and US History are the order of the day. But at the end of those, Diploma. :)
I am so sorry for what you have been through. You are amazing. Have you considered trying oral vancomycin? Dr. Kenneth Cox and Dr. Yinka Davies have successfully treated pediatric PSC/UC patients with this antibiotic. They also have helped patients post liver transplant reverse the disease after it has reocurred. They are in California (Stanford Univ and UC Davis). Dr. Harlan Winters is at Mass General and has successfully followed their protocol with that treatment for his patients. I've attached articles. Please keep me posted. I sent you a friend request and am happy to talk to you.
mah437, do you know where the Ronald McDonald House in Pittsburgh is? That's where I'm staying at the moment. Hopefully I will go home mid-next week.
Cactusgirl, there are a few reasons why I have not been on Vancomycin prophylactically.
1.) Because of the amount of Prednisone I've been on since diagnosed, I have virtually no immune system. Thus, when using something as strong as Vancomycin prophylactically, I am more susceptible to become immune to the effects of Vancomycin, especially when I need it most (i.e. a severe infection).
2.) I have lost around 75% of my hearing due, not to Vancomycin, but Amikacin, because these two drugs (and, as I've found, any drugs that end in "CIN") are similar my doctor's try to avoid them at all costs.
3.) I've become septic 4 times, the last time was so bad, I couldn't even hold my head up. Because of my high risk of becoming septic, the doctors want to try to save the stronger antibiotics, such as Vancomycin, for when I really need them.
In case you guys wanted to, and can stomach it (don't look while eating), I uploaded some pictures of my liver, and one of my scar 3 weeks after transplant. Just go to my pictures on my profile or look below.
Those are pretty intense pictures, Alex, but very instructive. I take it you have a scientific mind. My son's doctor wanted to show me pictures of my son's surgery on his forehead avm, but I couldn't look at them. It's a mom thing, I think.
I don't know, my mom has watched liver biopsies, was with me when we "visited" my old liver (ever got to tough it!) and, after this last transplant, they had to leave the incision open for 2 days, changing the bandage every 12 hours. Apparently you could literally see my guts. She's squeamish, but she can stomach it. Pretty sure she doesn't like it, she does and can, deal with it.
The difference is that vancomycin taken orally is not absorbed outside the GI tract. Worth a consult with one of the docs who are familiar with it.
LiverGiver said:
Thanks all!
mah437, do you know where the Ronald McDonald House in Pittsburgh is? That's where I'm staying at the moment. Hopefully I will go home mid-next week.
Cactusgirl, there are a few reasons why I have not been on Vancomycin prophylactically.
1.) Because of the amount of Prednisone I've been on since diagnosed, I have virtually no immune system. Thus, when using something as strong as Vancomycin prophylactically, I am more susceptible to become immune to the effects of Vancomycin, especially when I need it most (i.e. a severe infection).
2.) I have lost around 75% of my hearing due, not to Vancomycin, but Amikacin, because these two drugs (and, as I've found, any drugs that end in "CIN") are similar my doctor's try to avoid them at all costs.
3.) I've become septic 4 times, the last time was so bad, I couldn't even hold my head up. Because of my high risk of becoming septic, the doctors want to try to save the stronger antibiotics, such as Vancomycin, for when I really need them.
