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.

Colleen Young, Connect Director | @colleenyoung | Jul 4, 2016

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

coastalgirl | @coastalgirl | Jul 4, 2016

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

Thank you, Colleen, for the awesome feedback. This is what I was hoping our local transplant support group could become. Happy 4th!!

powderpuf | @powderpuf | Jul 5, 2016

What type of transplant did you have?

Rosemary, Volunteer Mentor | @rosemarya | Jul 5, 2016

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

I had a liver/kidney transplant in April 2009. I have found that all recipients have commonalities as far as managing our lives, or "life hacks", as Colleen mentioned. If you have any to share, I invite you to do so. Or if you have any questions, please ask those.
Are you a recipient or on the wait list? How are you doing?

coastalgirl | @coastalgirl | Jul 5, 2016

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

I had a kidney transplant. Underlying problem was inherited PKD.

coastalgirl | @coastalgirl | Jul 5, 2016

Love this!!

Colleen Young, Connect Director | @colleenyoung | Jul 6, 2016

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

coastalgirl | @coastalgirl | Jul 7, 2016

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

Goodness!! I have learned so many things on this journey. The biggest thing in general is all things in moderation. I have learned to listen to my body and just say no, even to things I love but the exhaustion would jeopardize my well being. I have learned how to live with asthma again which has been almost like learning to walk again!! Lol But a specific change has been to make healthy food choices, maintain a sense of balance, which for me has included yoga, working with a trainer, and acupuncture and retire from my crazy 70 hr. a week career to finally take care of me. This journey has brought me to a new realization of all things relevant and significant. I am still a work in progress as I was driven in my career path but thankfully I feel that I am finally in a good place. I aspire to help others find their way through their transplant journey:)) Thank you Mayo for this opportunity to share with others!! Happy summer all!!

Colleen Young, Connect Director | @colleenyoung | Aug 17, 2016

Hi all,
I thought you might be interested in watching this video discussion "Patient & Doctor Chat 15 Years Post Lung Transplant" with Richard Oppelt, the first patient to receive a lung transplant at Mayo Clinic’s Florida campus and his wife and caregiver, Janice Oppelt, and the doctor who did the transplant Cesar Keller, M.D.
https://connect.mayoclinic.org/discussion/on-facebook-live-patient-surgeon-chat-15-years-post-lung-transplant/

Dik Glass , liver transplt 8/4/11 | @dglass4040 | Aug 17, 2016

@dglass4040
My transplant was due to AAT..... Alpha one anti trypsin disease . Inherited from my parents. This disease was isolated by the swedes in the 1960's because young adults were contraction emphsema .
My mother was half Swedish and my father was half scotch ....... Orphan disease approx 100,000 people effected yearly ..... Primary symptoms do not really start until late twenties early thirties. You either need a lung or liver or both transplants .... Some need pancreas operations.
So, my sister was diagnosed at 38 and since died this past year at 67 and my brother 58 is about to have a liver transplant at UVAMED.
In October of 2010 I finished a Skyscraper in Nyc for the Rolex Watch company. Within 30 days of completion of this project my liver started failing . I had been followed
By the liver department of YALE Center of Digestive Diseases for 10 years and they were confident I would live a long life before I needed a transplant. By May of 2011 I had 14 ascities taps and had lost 60 lbs.
My visit to mayo Florida was suggested by my brother and my YALE ....Dr. Tamar Taddei.
By August 4 my Meld score had soared to 26 and I proceeded with a liver transplant by Surgeon Dana Perry.
Post transplant was very tough for a few weeks.

Later determined that I did not have a rejection but
My main hepatic artery was fully occluded or blocked
In the first 90 days .... My new liver formed new
Vessels or extensions to feed the liver and today I am rated low to failure . But, so far so good .
Life has been challenging.... In 2013 I had prostate cancer
With proton beam therapy, and now I am going to
Mayo Rochester for a 2nd prostate cancer operation.

Hand cleaning and staying away from crowds has
Giving me a cold free life for five years.
Washing food and making most of our meals has
Saved me from any food poisoning. Shaking hands
Is followed by quick hand cleaner. Movies are watched
At midweek at 1:00 pm matinees

Staying away from school kids , and a distance from all
3rd world travelers ( my nephews)

I am very happy to be alive and enjoy every day
Stress is to be forgotten.
Best to all
DGlass4040