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.

My risk-taking behavior has changed dramatically. I am much more aware of and watchful for dangers. Food has probably been the biggest issue for me. When eating out, which must happen when we travel, I often use extra napkins to lay my utensils upon. I watch the wait staff grab a cloth and walk around swiping at table after table. Is that cloth ever washed out? How much food debris do they miss? What about the food the toddler spilled or dropped on the seat? Did the previous customer wash their hands after toileting? How many germs did they bring to that table and where did they leave them? I never eat anything if it has fallen on the table or been touched by the server in my sight. I am most comfortable where they use a cleaning spray and then wipe the table and seats with either a clean towel or paper towels. I really dislike plates served with debris on the edges (which shows where the server's thumb had been). Drink through a straw, you don't know if/how well the glasses were washed. Have you ever gotten a glass of water that looked unclean? It is necessary to learn to ask for special treatment of your food. Restaurants in Rochester, MN were extremely helpful (because of the large amount of medical patients they serve) to us in learning what and how to ask. Many restaurants also now have their foods listed by specialty ingredients for different limiting diets. For example, I have 5 different limitations now and one place that is very helpful for me is Olive Garden. They will provide a list of foods including dairy, nuts, and other common dietary limitations. I am excited to read ideas from everyone else.

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.I understand what you are saying! @2011panc Thank you for sharing your dining out life hacks! It is sometimes a difficult thing for work buddies and associates to understand. But we do it for ourselves and to honor the donor who gave us a second chance at life. I, too have a couple of 'safe eating zones'. I always keep hand sanitizer with me. And I use if after I touch menu, and after I might use a salt, pepper, or catsup bottle - which I seldom choose to do!
I am already beginning to think about those holiday buffets and parties. Anybody have any hacks that might be especially helpful and healthy for holiday festivities? Please share ideas, or questions.
Rosemary

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For buffets, potlucks, etc., unless you know who cooked what or the event is catered and you can observe food safety measures in place, I only eat things that are served steaming or frozen or have obviously been commercially prepared. I love when individually-wrapped servings are available. I often put a handful of hard candies (individually-wrapped, of course) in my pocket or purse and take my own travel mug along and drink a great deal of black coffee. Coffee is almost always universally available and helps curb my appetite. I also either eat something before I go or take my own food along. If there is a host, I speak with them privately and explain that I have dietary issues and don't want to ruin their party by getting sick from eating something I shouldn't. And finally . . . water. It is rare that I am without a water bottle. I prefer spring water, but will drink filtered water if it is available.

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@2011panc

For buffets, potlucks, etc., unless you know who cooked what or the event is catered and you can observe food safety measures in place, I only eat things that are served steaming or frozen or have obviously been commercially prepared. I love when individually-wrapped servings are available. I often put a handful of hard candies (individually-wrapped, of course) in my pocket or purse and take my own travel mug along and drink a great deal of black coffee. Coffee is almost always universally available and helps curb my appetite. I also either eat something before I go or take my own food along. If there is a host, I speak with them privately and explain that I have dietary issues and don't want to ruin their party by getting sick from eating something I shouldn't. And finally . . . water. It is rare that I am without a water bottle. I prefer spring water, but will drink filtered water if it is available.

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You and I must have had the same post transplant lessons in Rochester! Thank you for sharing this valuable information.
I've just had an experience that I want to share so that others can be aware. I saw some covered individual containers of fruit on my local hospital cafeteria where I am currently visiting someone. I almost bought one, until I learned that they were left overs from the morning breakfast bar. Yikes!!
We have to always be alert and focused for our safety.
Rosemary

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@2011panc

For buffets, potlucks, etc., unless you know who cooked what or the event is catered and you can observe food safety measures in place, I only eat things that are served steaming or frozen or have obviously been commercially prepared. I love when individually-wrapped servings are available. I often put a handful of hard candies (individually-wrapped, of course) in my pocket or purse and take my own travel mug along and drink a great deal of black coffee. Coffee is almost always universally available and helps curb my appetite. I also either eat something before I go or take my own food along. If there is a host, I speak with them privately and explain that I have dietary issues and don't want to ruin their party by getting sick from eating something I shouldn't. And finally . . . water. It is rare that I am without a water bottle. I prefer spring water, but will drink filtered water if it is available.

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Yikes is right! I would have trusted the food in the hospital cafeteria also.

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I had begun to reduce my visits to food bars even before the transplant training. I watch people and when I see someone pick something up and put it back, or let their children handle the food on the table I am out. As they say now, sorry, not sorry. hehe

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It's that time of year when many of us are involved with holiday parties and celebrations and family and friends and preparations....and we can easily get forgetful of our own needs. So I want to encourage all of you transplant recipients, as well as anyone who is on the waiting list to be especially vigilant and proactive with your own healthy needs. Remember your meds, dietary needs, crowds, germs, hand cleaning...

One thing I want to stress, is to Take Time for Yourself!
It is OK for you to pass on some of the celebrations and gatherings.
Treat yourself to a nap before you get too tired.
Listen to your body. Do not over do it.

Thanks to all of you for sharing your experiences to help others on Connect in 2016.
I wish all of you a Joyful 2017....and I look forward to continuing conversations in 2017.
Rosemary

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@rosemarya

It's that time of year when many of us are involved with holiday parties and celebrations and family and friends and preparations....and we can easily get forgetful of our own needs. So I want to encourage all of you transplant recipients, as well as anyone who is on the waiting list to be especially vigilant and proactive with your own healthy needs. Remember your meds, dietary needs, crowds, germs, hand cleaning...

One thing I want to stress, is to Take Time for Yourself!
It is OK for you to pass on some of the celebrations and gatherings.
Treat yourself to a nap before you get too tired.
Listen to your body. Do not over do it.

Thanks to all of you for sharing your experiences to help others on Connect in 2016.
I wish all of you a Joyful 2017....and I look forward to continuing conversations in 2017.
Rosemary

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Thank you @rosemarya. I wish the same for you and all my fellow recipients and those still waiting. God Bless

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To my fellow transplant recipients, I have this new concern. I welcome any suggestions that you might offer.
Good news is that we are having our home interior painted, and hubby and I agree on the colors! I am concerned about a crew of painters entering into my safe home spaces. I'm already imagining germs, germs, germs!
Has anybody experienced painters or other long tern workpeople in your home? Did it concern you? How did you manage the situation?
Thanks, Rosemary

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@rosemarya

To my fellow transplant recipients, I have this new concern. I welcome any suggestions that you might offer.
Good news is that we are having our home interior painted, and hubby and I agree on the colors! I am concerned about a crew of painters entering into my safe home spaces. I'm already imagining germs, germs, germs!
Has anybody experienced painters or other long tern workpeople in your home? Did it concern you? How did you manage the situation?
Thanks, Rosemary

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Congrats Rosemary on getting the fresh coat of paint in the house, and agreeing on the colors! No small feat. How long will the work take? Might it be possible for you to visit friends or family for the duration of the work? What precautions would you take after the workers are gone?

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