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Living Life after your Transplant
Transplants | Last Active: Dec 10, 2023 | Replies (118)Comment receiving replies
Great idea @rosemarya to gather ideas of living post transplant. In the current social media lingo, these are called "life hacks" meaning that we re-think old practices like hackers rethink technology. Hacking in this sense is a good thing. I bet @bsox1901 @coastalgirl @sandras have some post-transplant life hacks to add.
For people who are more visual (like me), here is a video demonstration of American sign language for the work PEACE (aka Rosemary's handshake) http://www.handspeak.com/word/search/index.php?id=1609
Replies to "Great idea @rosemarya to gather ideas of living post transplant. In the current social media lingo,..."
I can't believe I didn't think to recall this life hack that has been very beneficial to me.
My donor was CMV positive and I was in the small group of adults that had not been exposed to CMV and therefore had no antibodies built up to help keep CMV at bay. The first year after transplant the virus reactivated full force 4 times requiring medication for 90 days each time.
I learned that a diet high in lysine and also taking super lysine daily of at least 1000 mg daily helps keep this virus under control as well as diminishing stress.
This has been of great assistance.
Wondering if any other transplant recipients have dealt with CMV issues and, if so, any tips you may have.
Glad you remembered about this Coastalgirl.
For anyone reading this CMV stands for cytomegalovirus, a common virus that can infect almost anyone. Most people don't know they have CMV because it rarely causes symptoms. However, if you're pregnant or have a weakened immune system, CMV is cause for concern. Here's more info http://www.mayoclinic.org/diseases-conditions/cmv/basics/definition/con-20029514
I recently ran out of my super lysine and had become a little nonchalant since I had been doing so well and had a flare up which quickly shook me into reality!! We can never be too diligent in maintaining our regimens to keep ourselves healthy.
Symptoms of CMV are like so many other symptoms we may suffer from time to time it is good to he able to identify quickly.
Mine personally consists nighttime elevated temps, night sweats, swollen throat & glands, upset or achy stomach, mouth ulcers, severe fatigue.
Stay strong fellow recipients!!
My first kidney transplant was CMV positive and I had never had CMV, they did not know at the time that the kidney had CMV or that I had never had it, through some other turn of events after my transplant they took out my old kidneys and started bleeding internally and the CMV took over and almost killed me......eight months in the hospital.
@ca426, Thank you for sharing this background information. You have good cause to celebrate after all that you have endured. Do you celebrate?
I like to advocate for celebrating events, even the small ones, that have occurred as we recover and live after our transplants.
There are 2 forums: Celebrate your Transplant Blessings. and Happy Transplantiversary that are good places to post and encourage others.
Rosemary
@ca426, I would like to introduce you to discussion forum: Kidney Transplant where we have some members who are in various of kidney transplant process. They may want to chat with you. I think that you have valuable information based on your experience. I am going to copy this message there, too.
https://connect.mayoclinic.org/discussion/kidney-transplant-1/
Rosemary
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Thank you, Colleen, for the awesome feedback. This is what I was hoping our local transplant support group could become.<br><br>Happy 4th!!<br><br><br><br><br><br>