Hello friends. It has been a while since I have written here. The latest in my saga is that the tacrolimus I take is causing kidney damage. Odd, really, since it is the drug to help people from rejecting a kidney transplant. But then I have auto immune diseases so my body doesn't recognize me as me. Then one adds the nine years of high to medium dose prednisone and all the experimental drugs prior to the tac. Well, I beat the original projections of making it out of the ICU nine years ago. They gave me three to five years at best. Now they are very happy that I keep going. It is getting harder. I spend my days in bed. Living a life of exhaustion and rarely go anywhere. Such is my life.
So with the medication induced diabetes (prednisone and tac, etc.) the side effects from the drugs, Thyroid removed and stage 3 kidney disease, I am running out of ideas how to keep myself going. The lungs have continued to get slowly worse and am on oxygen almost all day now. The liver got huge right at the initial illness. And the muscles continue to slowly fail. Blood draws are a laugh as my vessels in the arms are totally blown out. Back of arm hurts more and the legs will be worse for the draws. Every two weeks or sooner for those. No, a port is considered too dangerous for infection. Muscles hurt. Tired of saying how much pain I am in. If I am still and busy or distracted, very tolerable. Any stress and I have tears. A CNA comes twice a week to help me get a bath and spend some time to talk. An RN to watch for changes. I am very fortunate that way.
What I have read so far isn't very good news. My Nephrologist does transplants. But I am not a candidate as my lungs are shot. I did look up the diet for kidney, diabetes and gluten free. Guess what I found? I can have maybe four grains of rice and a quart of water daily! Lol. Really, nothing much left. Allergic to most artificial sweeteners. Less pain staying gluten free. Other than that I am doing ok.
Any ideas, my friends, what I should do to keep going? Thanks for your thoughts. Karen