Living Life after your Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Jul 4, 2016

I would like to ask you to share ideas about how you ‘live’ after your transplant. For example: hand washing and germ prevention, eating out; attending public events; daily medicine reminder……Practical living; not the medical things. I would like to share an idea for hand shakes.

I am 7 years out from my transplant and I have had some time to implement some healthy practices that work for me. I have also been fortunate to have the support and directives from my post transplant team at Mayo Clinic as well as working as a volunteer with my local organ donor association.
Last week I met a woman, a liver recipient, at an organ donor event. When we were introduced, she reached out to shake my hand. She was 9 years post transplant. She was both surprised and pleased that I did not extend my right hand to shake hers. Instead, I used the American Sign Language hand sigh for ‘Peace’ . She had been struggling for a long time with this awkward situation.

PEACE: Place the right flat hand on the left flat hand at chest level; then place the left on the right. Now move both flat hands down and to the sides with palms down. Pass from one position to another smoothly and continuously.

I hope this helps you as it helped her. Rosemary

@powderpuf

What type of transplant did you have?

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My brother was a perfect match and donated one of his kidneys. After two months recovering at home I started to work my full-time job and quality of life has been great without any complications to date. The major change to me was keeping a healthy diet and making sure all mess are taken on their schedule. My brother is also doing well and has not had any complications after surgery.

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@powderpuf

What type of transplant did you have?

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@peterm53 – Sounds like a great success! What was the time commitment for your brother, both in testing, in the hospital, and before he could return to work? Did you have it done at Mayo or another location? Just curious because I know each transplant center is different and I am going to Mayo so I want to make sure the information I share with those who have offered to donate to me is accurate. Thanks for sharing your experience. Even though my uncle and Dad both had kidney transplants I was not around them at the time so I’m in the dark except for what I have read. Also, were your original kidneys removed (nephrectomy)?

Lynn

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@powderpuf

What type of transplant did you have?

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If I remember correctly, my brother went through a few days maybe a week of testing pre transplant to check compatibility. Then after the results were back he returned a couple of times for additional tests. After the procedure, my brother was able to return to work after 2 weeks although 3 weeks min were required. Transplant was in Mayo in Jacksonville, FL. After the transplant my stay was 3 days, I was walking the same day and we both left the hospital the week of the transplant.

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@colleenyoung

What post-transplant life hack do you have to contribute @coastalgirl? What do you do differently now to maintain your health?

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Diet, hand washing (general cleanliness) keep away from sick people are my secret.

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@powderpuf

What type of transplant did you have?

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@peterm53 – Thank you for sharing. Anything you recommend that is not taught to you by Mayo about the whole process?

Lynn

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Mayo will be very thorough during your visits and I recommend you start writing down any questions and ask them there. I had the best ever experience at Mayo.

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@colleenyoung

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

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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.

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I am just very mindful of what and how I do things, I do everything as normal as possible, being cautious about not put my hands up to my face when in public, scratching my nose etc., and being active , also staying on top of my labs, I’m very Proactiv and have a close relationship with my doctors…I do a good bit of reading / research and try and stay on top of recent research and studies on transplant.

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@colleenyoung

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

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@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

Liked by IWantToBelieve

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@colleenyoung

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

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@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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@powderpuf

What type of transplant did you have?

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I have type 1 dibetes and most of the associated complications. I had a pancreas transplant in 2005. Now I am on the list for a kidney transplant but I’m also looking for a living donor. Rosemary & Colleen I liked the dscription & video of the ASL sign for peace. This is funny (to me) but it is very similar to the sign my grandkids use for “all done” at meal times. “All Done” might indeed be an appropriate expression in some circumstances! When I meet or greet people I often just wave, fist bump, pat their shoulder/arm, high five, nod & smile etc with minimal touching depending on what seems right at the time.

Liked by IWantToBelieve

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@powderpuf

What type of transplant did you have?

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@cehunt57, It is nice to hear from you. Your grandkids sound like darlings! I think that you make a great point – anything works with a smile 🙂
Rosemary

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@powderpuf

What type of transplant did you have?

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@cehunt57, There are some members discussing kidney transplant on out Kidney Transplant forum. I know they would enjoy talking with you.
https://connect.mayoclinic.org/discussion/kidney-transplant-1/
Rosemary

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@beach757, I am linking you to this discussion. Is this the discussion that you are trying to locate?
-and-
It is also posted as a blog: Top Transplant Hacks: Patients Share Their Best Tips and Tricks https://connect.mayoclinic.org/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/

We welcome any comments or questions from you.
Rosemary

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@rosemarya @coastalgirl @2011panc @bsox1901 @contentandwell @linda59 @dave12 @peterm53 @ca426 @ca426 Did you know that your words have helped many?

What started out as a discussion in the Transplant Group was transformed into this blog post:
> Top Transplant Hacks: Patients Share Their Best Tips and Tricks https://connect.mayoclinic.org/page/transplant/newsfeed/top-transplant-hacks-patients-share-their-best-tips-and-tricks/

A conversation of thousands of words was organized into a concise, very practical list of tips. Tips by recipients for recipients (and their supporters).

But your wisdom didn't stop there. Look at the video the writers and producers of the Mayo Clinic app made to get your tips in front of many more.

This video is shared with hundreds if not thousand of patients via the Mayo Clinic app and was also uploaded to Mayo's YouTube channel here http://www.youtube.com/watch?v=0ev221U7jaU

Many thangs to all who took part.
Enjoy it. Be proud of it. Share it.

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