This and That and Talk - My Transplant

@lcamino Ultimately we have to remember we can not question Gods plan. I definitely understand though I did the same thing after my dads death , he had alot of arrhythmia issues and he refused to get a defibrillator, I blamed myself at first for not pushing the issue with him. But my father went the way he wanted he laid down for a nap and never woke up. he lived life to the fullest that he could until the day he died and that makes me Happy!

@rosemarya yes i believe it definitely helped. There are many times because of my knowledge I was able to question or suggest things that I believe absolutely made a difference in my treatment. My dad also had dilated cardiomyopathy and died at age 52 from it so I already knew a lot from that also. Lol although sometimes I think it would have been better had I not had a background. I can remember laying in the bed post transplant and watching my heart monitor!

@contentandwell - My first daughter (she would be 21 now) was named Stephanie and she died at 7 months. Unfortunately they did not do a full autopsy so the exact cause of death is really not clear. Technically she died of congestive heart failure. When I took her to the doctor for a cold I was sent to the ER and they found that she had dilated cardiomyopathy (enlarged heart muscle). She died in 12 hours after being admitted. After her death they learned she had RSV and a valve that did not close properly. The theories are as follow and depend on which specialist you talk to. 1) Her heart abnormality (from birth that we did not know about) combined with RSV was too much and led to congestive heart failure. 2) The heart abnormality was from PKD (my kidney disease and mirtovalve prolapse is common with PKD) and led to heart failure. 3) FAOD (fatty oxidation disorder) which was the most likely cause of death. As a result all my pregnancies were high risk because at the time little was known about it there was no way to screen a newborn (there is now for some strains) so often children die before it is diagnosed. I was on pins and needles with the birth of our second daughter because if a child vomits/spits up or has diarrhea their body attacks body muscle, including heart, for energy. It's a long story but either way my other two children did not end up having this genetic condition. We almost adopted since it was genetic and we were already dealing with passing on PKD and FAOD had a very high death rate 21 years ago.

Got to go. I'll answer your next question later.

@contentandwell - I have never heard of laser treatment for fungul infections. I guess the question I'd ask your transplant team is the risk of it spreading internally. If there is not risk then I'd try the topical Jublia (if allowed) and soak with bleach. The Jublia is quite expensive though so you might want to price it first. I forget what it was because we had already met our out of pocket but I have been using the same bottle since January and will probably need a refill next month. Hope your appointment goes well!

@2011panc they discontinued the cellcept but said in a month they would be changing my meds again.
JK

@contentandwell,  That makes more sense.  Have you had Cellcept
replaced with something else or was it just dropped?  I was changed
from Cellcept (Mycophenolate Moftil) to Myfortic (Mycophenolate Acid).

@contentedandwell, your health and your confidence in your doctor are top priority. I hope that you find a doctor.
Rosemary

@2011panc oops, I meant I do not take cellcept anymore.
JK

@lcamino, I am sure my nephew-in-law has looked into all of that. He and my niece are both truly brilliant and very diligent. I don't know about his brother, maybe there was something reason they felt he should not donate. I would hate to bring it up to him, there had to be a reason and maybe if his brother just decided against it it is painful.
There are a lot of walking trails in town I will try to remember to check to see if you can bike on them if I decide to invest in a bike. They are not cheap these days. There are no stop signs in town except on the main east-west highway, route 101, that goes through town. The town is semi-rural, you need at least 1.5 acres to build and most people have their own wells and septic.
JK

@contentandwell,  I noticed in your post that you said that you are
no longer on Prograf but take 3 tac twice a day.  FYI:  If tac
is short for tacrolimus, you actually are still taking Prograf. 
Prograf is a brand name, tacrolimus is the generic name.  It sounds
like you are doing well and I am glad for you for that.