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Mentor

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.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 18, 2016

@dglass4040, Thanks for sharing your remarkable journey. And for sharing the "life hacks" that help you stay healthy! I feel certain that some new transplant recipients. will find them helpful. You are so-o-o right, we organ recipients are 'happy to be alive and enjoy every day'!
You say that you will be going to Mayo in Rochester? Do you know about the Gift of Life House? I urge you to look into it for safe environment while you are at Mayo. It is the best "life hack" for lodging for transplant patients. My husband and I lived there for 11 weeks in 2009. And we return every year during my annual re-evaluation. Keep on enjoying life! Rosemary

REPLY
coastalgirl | @coastalgirl | Aug 18, 2016
In reply to @dglass4040 "@dglass4040 My transplant was due to AAT..... Alpha one anti trypsin disease . Inherited from my..." + (show)
@dglass4040

@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

Jump to this post

Blessings to you my fellow transplant recipient!! Warms my heart to hear your story of dedication to live a fulfilling life. Thank you for sharing with all of us.

REPLY
coastalgirl | @coastalgirl | Sep 7, 2016
In reply to @colleenyoung "Great idea @rosemarya to gather ideas of living post transplant. In the current social media lingo,..." + (show)
@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

Jump to this post

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.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 7, 2016
In reply to @colleenyoung "Great idea @rosemarya to gather ideas of living post transplant. In the current social media lingo,..." + (show)
@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

Jump to this post

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

REPLY
coastalgirl | @coastalgirl | Sep 7, 2016
In reply to @colleenyoung "Great idea @rosemarya to gather ideas of living post transplant. In the current social media lingo,..." + (show)
@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

Jump to this post

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!!

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 19, 2016
In reply to @dglass4040 "@dglass4040 My transplant was due to AAT..... Alpha one anti trypsin disease . Inherited from my..." + (show)
@dglass4040

@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

Jump to this post

@swordfish, I want to invite you to read some of the helpful living hints that @dglass4040 has shared with us about remaining healthy after liver transplant. As I've told you before, I'm cheering for you. Rosemary

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 19, 2016

Hi, All.
I want to suggest that you look at the new Connect Page on Living Donation! I know that we are already transplanted, but it is so-o-o very interesting. Amazing medical progress. And information is right there to read.

Really though, of interest is the accompanying blog. There is some great information from Mayo staff. One about avoiding flu. And another about "raw" foods.
I hope that you will find these, and more "life hacks" helpful!
Please continue to share any helpful hints that you learn about. And , of course, if you have any questions, ask them, too. We are in this together. And together we can support and learn from each other.
Rosemary

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 19, 2016

Thank you for introducing the new Transplant Blog, Rosemary.
We've just introduced Blogs on Connect. They are blogs and information written by Mayo Clinic specialists and the transplant team was one of the first teams to publish their page. Are you surprised? No, neither am I. What a great team.

You can find the Transplant Blog here: https://connect.mayoclinic.org/blog/transplant/
Here is the Blog Directory: https://connect.mayoclinic.org/blogs/

Keep you eye on it as we will be publishing more blogs in the coming weeks.

Pop over to the Transplant blog, leave a comment on one of the Newsfeed posts, and give us your feedback.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 13, 2016

Hi All
I want to share a reminder as we approach flu season, and holiday season.
This is a perfect time to double up on protecting yourself from all those yucky germs and infections that seem to surface this time of year. It's also an ideal opportunity to reteach family, friends, co-workers, anyone with whom you associate regularly.
---Get flu shot.
------Wash those hands.
----------- Avoid crowds.
-----------------Cover that cough or sneeze.
Did I forget any?
---Feel free to add to this list.
Let us transplant recipients stay healthy together. We've come too far to let us (or our friends) become careless about our wellbeing.

Hugs and good health to all of you,
Rosemary

REPLY
coastalgirl | @coastalgirl | Nov 13, 2016

Thank you, Rosemary, for that reminder. I certainly need to get that flu shot right away. Hope you are doing well and looking forward to the holidays:))
Happy Thanksgiving to you and all our fellow transplant recipients!!

REPLY
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