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This and That and Talk - My Transplant
As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all - a new life! We don't always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.
Drop in and say 'Hi'. You are welcome anytime.
What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?
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@2011panc oops, I meant I do not take cellcept anymore.
JK
@contentedandwell, your health and your confidence in your doctor are top priority. I hope that you find a doctor.
Rosemary
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1 Reaction@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).
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1 Reaction@2011panc they discontinued the cellcept but said in a month they would be changing my meds again.
JK
@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!
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1 Reaction@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.
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2 Reactions@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!
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2 Reactions@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!
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3 Reactions@2011panc They did the same for me. Mine was changed due o the fact I was having horrible GI symptoms. Did they give a reason as to why they changed yours
@amynewheart, they changed it for the same reason, although it has not
stopped my GI symptoms. Again I have discovered an additional
failure of my physical body. I have autonomic neuropathy what is
disrupting my GI processes.