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Mentor

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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jackie421blfdgurl | @jackie421blfdgurl | Jul 23 10:50am

HI Rosemary this isJackie checking in. How are u? Well my ankles are swollen from time to time, Saw my liver doctor a week ago, she is changing my blood pressure meds cause this pill u can
have swollen feet or legs, as far as the numbness in feet and legs she is taking me off tacrolimus
and putting me on sirolimus which I am nervous that is the pill I was n from hospital and ended with mouth soars in my mouth for 23 days she took me off and the soars cleared up.but I need blood wk once a week to test the numbers on sirolimus, and it has a lower protection for the
surpressed immune. oh well.just wonder if anyone else is experiencng this. Thanks girl. Have a
great day..Hot Hot in N,J,

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 23 8:39pm
In reply to @jackie421blfdgurl "HI Rosemary this isJackie checking in. How are u? Well my ankles are swollen from time..." + (show)
@jackie421blfdgurl

HI Rosemary this isJackie checking in. How are u? Well my ankles are swollen from time to time, Saw my liver doctor a week ago, she is changing my blood pressure meds cause this pill u can
have swollen feet or legs, as far as the numbness in feet and legs she is taking me off tacrolimus
and putting me on sirolimus which I am nervous that is the pill I was n from hospital and ended with mouth soars in my mouth for 23 days she took me off and the soars cleared up.but I need blood wk once a week to test the numbers on sirolimus, and it has a lower protection for the
surpressed immune. oh well.just wonder if anyone else is experiencng this. Thanks girl. Have a
great day..Hot Hot in N,J,

Jump to this post

Hi, @jackie421blfdgurl. It is good to hear from you!
I'm sorry to read that you had a reaction when you were taking sirolimus once before. I can understand your nervousness. However, it sounds like your liver doctor has a plan to monitor your labs every week so that she can carefully monitor the level and monitor your liver enzymes and any side effects (like the mouth sores). It will be your responsibility to contact her right away if those side effects appear. That way the dose could be adjusted before any problem occurs. She is aware of your previous reaction, isn't she?
Jackie, Sirolimus is a good medication - that is why so many transplant patients are taking it. Each one of us reacts differently to the meds and our transplant doctors are going to work to find the one that works best for each one of us. I think it is a good thing that she is carefully watching the blood pressure meds since she suspects it is causing your swelling.

I want to re-connect you with a discussion where you joined toward the end of the conversion. If you have not already done so, Please look at what others have shared about sirolimus from their experience.
- Do any transplant patients here have experience with Sirolimus?
https://connect.mayoclinic.org/discussion/do-any-transplant-patients-here-have-experience-with-sirolimus/
@gratefulbob, @charlie5454s, @cehunt57, Do you have any experience with Sirolimus that you would share with @jackie421blfdgurl?

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2 replies
Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Jul 23 8:58pm
In reply to @rosemarya "Hi, @jackie421blfdgurl. It is good to hear from you! I'm sorry to read that you had..." + (show)
@rosemarya

Hi, @jackie421blfdgurl. It is good to hear from you!
I'm sorry to read that you had a reaction when you were taking sirolimus once before. I can understand your nervousness. However, it sounds like your liver doctor has a plan to monitor your labs every week so that she can carefully monitor the level and monitor your liver enzymes and any side effects (like the mouth sores). It will be your responsibility to contact her right away if those side effects appear. That way the dose could be adjusted before any problem occurs. She is aware of your previous reaction, isn't she?
Jackie, Sirolimus is a good medication - that is why so many transplant patients are taking it. Each one of us reacts differently to the meds and our transplant doctors are going to work to find the one that works best for each one of us. I think it is a good thing that she is carefully watching the blood pressure meds since she suspects it is causing your swelling.

I want to re-connect you with a discussion where you joined toward the end of the conversion. If you have not already done so, Please look at what others have shared about sirolimus from their experience.
- Do any transplant patients here have experience with Sirolimus?
https://connect.mayoclinic.org/discussion/do-any-transplant-patients-here-have-experience-with-sirolimus/
@gratefulbob, @charlie5454s, @cehunt57, Do you have any experience with Sirolimus that you would share with @jackie421blfdgurl?

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cehunt57 here. I had a pancreas transplant (2005). I started with Prograf/Tacrolimus and Cellcept/Mycophenalate. Found out the Cellcept/Mycophenolate didn’t agree with me. I was switched to Sirolimus. I never had any problems with it. I was taken off of it when I had a surgery for an incisional hernia repair (2012). Apparently it was thought that Sirolimus interfered with wound healing. I was put on something else (Immuran sp? I think temporarily). At the surgery follow up, that med was stopped but the Sirolimus was never resumed. I was told that with more time, less immune suppression is needed. Now I am only on Tacrolimus (since 2012).

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jackie421blfdgurl | @jackie421blfdgurl | Jul 24 6:35am
In reply to @rosemarya "Hi, @jackie421blfdgurl. It is good to hear from you! I'm sorry to read that you had..." + (show)
@rosemarya

Hi, @jackie421blfdgurl. It is good to hear from you!
I'm sorry to read that you had a reaction when you were taking sirolimus once before. I can understand your nervousness. However, it sounds like your liver doctor has a plan to monitor your labs every week so that she can carefully monitor the level and monitor your liver enzymes and any side effects (like the mouth sores). It will be your responsibility to contact her right away if those side effects appear. That way the dose could be adjusted before any problem occurs. She is aware of your previous reaction, isn't she?
Jackie, Sirolimus is a good medication - that is why so many transplant patients are taking it. Each one of us reacts differently to the meds and our transplant doctors are going to work to find the one that works best for each one of us. I think it is a good thing that she is carefully watching the blood pressure meds since she suspects it is causing your swelling.

I want to re-connect you with a discussion where you joined toward the end of the conversion. If you have not already done so, Please look at what others have shared about sirolimus from their experience.
- Do any transplant patients here have experience with Sirolimus?
https://connect.mayoclinic.org/discussion/do-any-transplant-patients-here-have-experience-with-sirolimus/
@gratefulbob, @charlie5454s, @cehunt57, Do you have any experience with Sirolimus that you would share with @jackie421blfdgurl?

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U are AWESOME
I hope everyone in your life knows u are AWESOME. Thank u. I just can't take the numbness in my feet and legs does not go away. I will try the sirolimus will let u know the progress. I will go to that web site u posted.happy Wednesday

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1 reply
jackie421blfdgurl | @jackie421blfdgurl | Aug 14 9:57pm
In reply to @jackie421blfdgurl "U are AWESOME I hope everyone in your life knows u are AWESOME. Thank u. I..." + (show)
@jackie421blfdgurl

U are AWESOME
I hope everyone in your life knows u are AWESOME. Thank u. I just can't take the numbness in my feet and legs does not go away. I will try the sirolimus will let u know the progress. I will go to that web site u posted.happy Wednesday

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Hi Rosie how r u? Have u had a hot summer like we did here on the East Coast. They say dog days of summer August is .but we had dog days in July....just a mention it has been two in half weeks I am on sirolimus
But still on tacrolimus
Dr. Will get me off of tacrolimus after my numbers come up on the sirolimus..my feet and legs are getting more numb it is annoying.. might have to go back for surgery. My hiatal hernia is starting to really bother me in more ways than I like to mention,.going back to see liver Dr. And then we see!!! Hope all is well with u.catch u later

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