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

++++NOTE++++
Did you know that the words shared by members in this discussion 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/newsfeed-post/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 member 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.

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

peterm53 | @peterm53 | Jul 19, 2017

In reply to @powderpuf "What type of transplant did you have?" + (show)

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.

IWantToBelieve | @IWantToBelieve | Jul 19, 2017

In reply to @powderpuf "What type of transplant did you have?" + (show)

@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

peterm53 | @peterm53 | Jul 19, 2017

In reply to @powderpuf "What type of transplant did you have?" + (show)

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.

peterm53 | @peterm53 | Jul 19, 2017

In reply to @colleenyoung "What post-transplant life hack do you have to contribute @coastalgirl? What do you do differently now..." + (show)

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

IWantToBelieve | @IWantToBelieve | Jul 19, 2017

In reply to @powderpuf "What type of transplant did you have?" + (show)

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

Lynn

peterm53 | @peterm53 | Jul 19, 2017

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.

Charlie | @ca426 | Jul 29, 2017

In reply to @colleenyoung "Great idea @rosemarya to gather ideas of living post transplant. In the current social media lingo,..." + (show)

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.

Charlie | @ca426 | Jul 29, 2017

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.

Rosemary, Volunteer Mentor | @rosemarya | Jul 30, 2017

In reply to @colleenyoung "Great idea @rosemarya to gather ideas of living post transplant. In the current social media lingo,..." + (show)

@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

Rosemary, Volunteer Mentor | @rosemarya | Jul 30, 2017

In reply to @colleenyoung "Great idea @rosemarya to gather ideas of living post transplant. In the current social media lingo,..." + (show)

@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