The difference is that vancomycin taken orally is not absorbed outside the GI tract. Might be 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.
Amazing story, and it sounds like you have had some of the same experiences as I have. I was first diagnosed at age 14 and had a transplant at 24 in Pittsburgh at UPMC Presby. I now live in New England and see doctors at Mass General. My disease has returned and I am currently on the transplant list in Boston but I have come to Florida and am now on the list at Mayo Clinic as well. I have had the opportunity to go to some of the best hospitals in the country but I have found the Mayo clinic to be head and shoulders above anywhere I have ever gone. I'm curious if it is somewhere you have spent any time? But I also know that children's hospital in Pittsburgh is excellent, unfortunately I spent enough time there between ages 14-18.
Hang in there and keep working, my wife and I are both teachers, and she teaches some online classes and really enjoys them, and I just finished my masters degree online. It sure is a great opportunity for anyone with medical issues.
You are a special person, a real warrior in this battle against UC and PSC. I had both. My liver transplant took place in February 2012 and all is well. I hope and pray for you, truly an exceptional case because of your experience and desire to help, not because the hospital labeled you as such in a negative way. I have faith that there is a way forward for you and that you will achieve your desire to answer questions and benefit others. God bless you.