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This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

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?

Interested in more discussions like this? Go to the Transplants Support Group.

osteogirl111 | @osteogirl111 | Jun 7 7:03am
In reply to @IWantToBelieve "@contentandwell - My first daughter (she would be 21 now) was named Stephanie and she died..." + (show)
@IWantToBelieve

@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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I have FAOD as adult but I understand how hard is it. Being mom to ill child is also devastating. I have son with autoimmune cardiomyopathy and I was extremely stressed when he had heart failure. I keep my fingers crossed that he will be fine as he is using off label drugs Rapamycin to reduce problem. It was used for transplant patients to suppress immune system. Our combined illness is too much to take. I am not sure how long I can take it. I really need help with low blood sugar problems at night with palpitations and chest pain.

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edwardlwallace | @edwardlwallace | Jun 7 8:31am
In reply to @IWantToBelieve "Hi @rosemarya. We have connected before. I need to lose weight to be in better health..." + (show)
@IWantToBelieve

Hi @rosemarya. We have connected before. I need to lose weight to be in better health for my kidney transplant in a year or two. I was doing well for awhile (lost 20 lbs)but now I'm being a yo-yo. I really need to lose another 40 lbs but am struggling with my energy level (to exercise) because I'm in stage 4 and on very low protein. I also am dealing with plantar fasciitis which has meant no more walking the dog for quite awhile and that was my exercise before. I explored spending the money on Jenny Craig but they do not have low salt meals and I was ready to try Optifast with the local bariatric hospital program but you can only do that if in stage 1 or 2. Are there any programs at the Mayo Clinic or with the transplant team at Mayo? I'm open to any suggestions at this point. I know what to do, I just don't seem to be able to follow through long term.

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I had the best success with swimming / pool exercise. If you can swim laps great but if not then using an aqua jogger to hold you upright in deep water and run in place or take a class. The water buoyancy is great on joints and no pressure on feet the resistance increases caloric burn and so you get the benefit of running or exercise without the stress. I believe it would be very beneficial for cardio and also weight loss. It also strengthens the core for post recovery.
Blessings Ed

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