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Living Life after your Transplant

Posted by @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

REPLY

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

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

Happy 4th!!

What type of transplant did you have?

@powderpuf

What type of transplant did you have?

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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?

@powderpuf

What type of transplant did you have?

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

Liked by IWantToBelieve

Love this!!

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

@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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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!!

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/

@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

@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

@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

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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.

@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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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.

@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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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

Liked by IWantToBelieve

@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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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!!

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