1. < Transplants
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 | Nov 11, 2021
In reply to @contentandwell "Thanks, @estrada53 Those are excellent tips. I was very careful on the flights we took in..." + (show)
@contentandwell

Thanks, @estrada53 Those are excellent tips. I was very careful on the flights we took in the last couple of weeks, perhaps not quite as careful as you are. One thing that would be impossible would be arriving at the airport as close to departure as possible - my husband is completely fanatical about getting there very early, to a ridiculous extent.

Even with precautions though, I wonder how many hospitals advise their post-transplant patients to be so cautious and not fly. Unfortunately, we do not have miles to be able to fly first class and the difference in price is prohibitive.
JK

Jump to this post

When I inquired about travel in August, my advice from my Mayo nurse was to follow the CDC guidelines. My husband and I flew safely, and without any of the incidents that are on the news.
I wonder of our travel during the Off Season made the difference? Have you considered celebrating a quiet Christmas at home, and then celebrating a family get together at a later date? Already there is talk of crowded and delayed flights over the holidays. I wonder of this is the reason you got the No fly notice.

REPLY
1 reply
JK | @contentandwell | Nov 11, 2021
In reply to @rosemarya "When I inquired about travel in August, my advice from my Mayo nurse was to follow..." + (show)
@rosemarya

When I inquired about travel in August, my advice from my Mayo nurse was to follow the CDC guidelines. My husband and I flew safely, and without any of the incidents that are on the news.
I wonder of our travel during the Off Season made the difference? Have you considered celebrating a quiet Christmas at home, and then celebrating a family get together at a later date? Already there is talk of crowded and delayed flights over the holidays. I wonder of this is the reason you got the No fly notice.

Jump to this post

@rosemarya The "No fly" notice did not specify for the holidays, it was for any time. As I have said before, MGH is very conservative. Perhaps their conservatism is a reason they are in the top category for survival rates after transplant, per the SRTR.org database.

Getting together at a later date is a great idea but I'm not sure that would fly with my son and his wife, or my daughter and her husband. These days, since many flights have been cut, I think the planes are pretty full anyway, ours certainly were. My daughter flew there from Philadelphia though and her plane was only half full! Of course she did take a late flight so that could be why.

I am so conflicted about this. I want to be safe of course but there are too few opportunities for all of us to get together and as we age time becomes more precious. I hate to sound fatalistic, my husband is in good health but he is 86. Who knows how much longer we will all be here?
JK

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 11, 2021

Here is an article that came in the Mayo Clinic Newsletter this morning. It may help ease your mind regarding flying, reading their recommendations. I think everyone has to decide for themselves, given their own unique situation.

https://www.mayoclinic.org/connected-care/is-it-safe-to-fly-during-the-covid-19-pandemic/cpt-20510769
Ginger

REPLY
1 reply
athenalee | @athenalee | Nov 11, 2021
In reply to @contentandwell "@rosemarya The "No fly" notice did not specify for the holidays, it was for any time...." + (show)
@contentandwell

@rosemarya The "No fly" notice did not specify for the holidays, it was for any time. As I have said before, MGH is very conservative. Perhaps their conservatism is a reason they are in the top category for survival rates after transplant, per the SRTR.org database.

Getting together at a later date is a great idea but I'm not sure that would fly with my son and his wife, or my daughter and her husband. These days, since many flights have been cut, I think the planes are pretty full anyway, ours certainly were. My daughter flew there from Philadelphia though and her plane was only half full! Of course she did take a late flight so that could be why.

I am so conflicted about this. I want to be safe of course but there are too few opportunities for all of us to get together and as we age time becomes more precious. I hate to sound fatalistic, my husband is in good health but he is 86. Who knows how much longer we will all be here?
JK

Jump to this post

JK, I’ve been meaning to ask if you saw your new grandchild…so, glad you braved it and went. I definitely feel you’re concern about traveling closer to the holidays. I have not and will not eat in a restaurant. The mask mandate is now lifted where I started work, and my desk is in a shared public office, old building, poor airflow, etc.. I’m very nervous! I have to eat and drink at least a little…

Not to add to your stress, but Colorado is having a significant increase in cases. With winter soon upon us and the holidays, it certainly contributes to travel anxiety. And, a lot of people will be flying. My take on flying is the airplanes aren’t too bad, but the crowds in the airport would be more worrisome.

I think @estrada53 has great travel advice to follow if you decide to go. Just remember to not feel guilty if you decide not to go this time. As Rosemary says, we need to protect ourselves as we can’t always control what happens around us. Your family will understand and you’ll be able to visit again!
Athena

REPLY
1 reply
athenalee | @athenalee | Nov 11, 2021
In reply to @estrada53 "Since purchasing a condo in the Chicago area (a year ago) I have traveled back and..." + (show)
@estrada53

Since purchasing a condo in the Chicago area (a year ago) I have traveled back and forth to Arizona more than 6 times. I am overly cautious and am like a crazy lady in the airport. Here are a few tips: Double mask or mask with face shield. If I can, I purchase first class seats - using my miles. If not, I choose a window seat away from the aisle where everyone passes. In the airport, I wear plastic gloves and carry a zip lock bag of wipes with me. I try to arrive at the airport with as little time possible without missing my flight - check how busy the airport is, etc. Checking my bags outside helps - if that's available to you. I carry an empty water bottle and fill it up inside the airport. Not bought bottles.
I often bring along snacks as well. Social distancing through security checkpoints can become an issue. If you set the example and stay six feet back from the person in front of you, hopefully he folks behind you will see and follow. I used to bring an umbrella and carry it over my shoulder and no one wanted to be poked in the eye behind me.
I wipe down my luggage after retrieving it from the carousel. i have not become ill from any of my flights.

Jump to this post

Impressive due diligence! I’ll remember these tips when I ever get to travel again…and, become braver!

REPLY
JK | @contentandwell | Nov 12, 2021
In reply to @athenalee "JK, I’ve been meaning to ask if you saw your new grandchild…so, glad you braved it..." + (show)
@athenalee

JK, I’ve been meaning to ask if you saw your new grandchild…so, glad you braved it and went. I definitely feel you’re concern about traveling closer to the holidays. I have not and will not eat in a restaurant. The mask mandate is now lifted where I started work, and my desk is in a shared public office, old building, poor airflow, etc.. I’m very nervous! I have to eat and drink at least a little…

Not to add to your stress, but Colorado is having a significant increase in cases. With winter soon upon us and the holidays, it certainly contributes to travel anxiety. And, a lot of people will be flying. My take on flying is the airplanes aren’t too bad, but the crowds in the airport would be more worrisome.

I think @estrada53 has great travel advice to follow if you decide to go. Just remember to not feel guilty if you decide not to go this time. As Rosemary says, we need to protect ourselves as we can’t always control what happens around us. Your family will understand and you’ll be able to visit again!
Athena

Jump to this post

Thanks, @athenalee

We spent a great deal of time with our new granddaughter, she's so sweet and I am smitten. While there we pretty much stay put, take walks on good days, and I did go two times, briefly, to a grocery store. Of course I was masked.

NH too is experiencing a surge according to a graph I saw.

I am still up in the air about going. My daughter and her husband really want to go but they tend to procrastinate when making plans like that and now airfares have increased so I'm not sure if they will go or not. If they don't then we definitely will not, they will come here, but if they go then I need to decide.

Time will tell.
JK

REPLY
JK | @contentandwell | Nov 12, 2021
In reply to @gingerw "Here is an article that came in the Mayo Clinic Newsletter this morning. It may help..." + (show)
@gingerw

Here is an article that came in the Mayo Clinic Newsletter this morning. It may help ease your mind regarding flying, reading their recommendations. I think everyone has to decide for themselves, given their own unique situation.

https://www.mayoclinic.org/connected-care/is-it-safe-to-fly-during-the-covid-19-pandemic/cpt-20510769
Ginger

Jump to this post

Good article, @gingerw
I think MGH may be the strictest transplant center from what I am hearing. At this point the decision will probably rest on whether or not my daughter and her husband go to Denver.
JK

REPLY
blbird33 | @blbird33 | Jan 5, 2023

Thank you for all the wonderful safety ideas as I am into 3rd month post transplant. And isolating most of the time. A bit fearful and yet staying safe my way. Things will get better over time. I am grateful for my kidney and my friends and family understanding and loving me through Facetime. BB

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 10, 2023

@blbird33, I am glad that you joined this support group and that you found some good ideas. I am particularly proud of this group because of how it grew into such a wonderful collection of ideas by patients like you and me! I hope that everyone who has participated in this group will also feel pride because Mayo has taken our ideas for the Transplant Blog and created a video that has been used to help all patients!

You are off to a great start because your family and friends are supporting you, too. Have you shared the video, or any of this with them? My family and friends are very protective of me and they even check with me if they are not feeling well or have a question about a recipe that they might want to serve. 🤍 You are wise to be focused on being safe. I know that over time you will discover that the safety efforts will become automatic for you. I definitely approve of your emphasis on isolating, and I trust that as spring and summer arrive that you will be able to enjoy some outdoor venues with family and friends. With baby steps and using your common sense you will do well!

BB - Which tip did you find particularly useful for you now or in the future? What is a hint (or a question) that you want to share for someone of your 'living-in-the-Covid' generation of transplant recipients?

REPLY
markslivertransplant | @markslivertransplant | Dec 6, 2023
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

I go in for my 4 month review post transplant Mayo Jax. Dr Perry performed my operation also. Lol small world.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.