This patient support community is for discussions relating to transplants, anti-rejection drugs, financial and insurance issues, long-term issues, organ rejection, pre- and post-surgery, and waiting list issues.
I had a liver transplant when I was 2 years old I am now 24.Is it possible that you can live with out medication and if not how long would it be till you went into rejection.I was on medicine till about four years ago when I couldnt afford it anymore.I took the main medicine for rejection until then.I am not going to try to spell it because I have no clue how to.Any information would help
I'm not sure about the liver as far as your question goes. I do know that for the heart, the rejection process is quick in the sense that if you miss two doses than you have to have IV drugs. Miss several doses and you could be in rejection. You really do need to go back to your transplant team and discuss the problems you are having so that they can get you the help you need. Don't you see the team a few times a year? Don't they do biopsies on your liver?
It is possible you may not need the anti -rejection meds
anymore, however, you need to be watched, via blood
work. You really need to get some kind of medical
insurance if at all possible.
I wish you the very best
I have been to the Er a couple times for differnt things and they always do blood work and everything with the liver comes back normal and i have never had any problems with it.And i was seeing a doctor till i was 18 every 6 months and then lost insurance so i havent been to a actually doctor in over 4 years.But i do think it is possible to go with oput the meds.Just wanted to get input from others.And also do yall know where they do research for stuff like that.I would love to have test done on me to see if for future patiants they wouldnt need any medcine after transplant
The thing is that the doctors probably already know whether or not patients no longer need medicines for the liver transplant. if you were to call your doctor and ask him about that, you'd probably find out. Many University Hospitals have wards set aside for research patients and the doctors will ask the patients/family if they are interested in going on that ward. Also the NIH (National Institute of Health) is set up to do patient care as well as research. Understand that these options are really opened to those few with very rare conditions.
It is true that some patients can liver without any anti-rejection meds. Getting there is usually a gradual process beginning with dose reduction and close monitoring. If you are suggesting that you think you can just stop taking your meds I would strongly advise against that as it can be extremely dangerous. I was being weened off my meds in 2006 - 6 years after my transplant. I was doing well with the dose reductions until my dose was reduced to 2 mg Prograf EVERY OTHER day. My enzymes began to climb rapidly and some histological damage resulted. My Prograf dose was increased after one month of that regime and everything resolved. But, had I not been monitored closely I would never have known my liver was being damaged. If you want to try getting off the meds you must do with your transplant team. There are patients who do not qualify for this approach and just because you do look like a viable candidate for weening off meds doesn't mean you will be successful. You have to work with your team.
where did you have your transplant? My son had the first split liver transplant done at Children's Hospital, in Seattle,WA. His Dr.s are part of a research program following transplant patients who no longer take anti rejection medicine. It is also part of University of Washington Hospital. My son is 22, and received his transplant when he was 1. he has been off anti rejection medicine since he was 11. At that time he had gotten PTLD, which lead to cancer. His Dr.s decided to take him off antirejection medicine at that time as he was on a very low dose of cyclosporine. They said it would be easier to deal with rejection then Cancer. He has not had an signs of rejection. You may want to call one of the Hospitals to see if you can become a part of the study. It is possible that your related medical expenses could be waived.
Hope you can continue to have good health.
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