Top Transplant Hacks: Patients Share Their Best Tips and Tricks

Aug 30, 2017 | Mayo Clinic Transplant Staff | @mayoclinictransplantstaff | Comments (26)

2017-08-14 Transplant Hacks Blog Post

Your doctor gave you a list of do’s and don’ts to minimize your risk after transplant, especially due to your weakened immune system, and slowly you’ve begun to learn some tricks that help you in your recovery. Beyond this great information and experience, what if you could also get some tips, or life hacks, from other transplant patients who have been there, done that?

In Mayo Clinic’s online community, Mayo Clinic Connect, members share exactly that — their best post-transplant hacks — in a discussion thread called Living Life after Your Transplant. We thought you might enjoy them brought together in a handy list.

Rosemary, a transplant recipient at Mayo Clinic’s campus in Rochester, Minnesota, had the following to say about her hacks: “I remember being told that it is all about choices and risks involved. I want to assure you that my choices as to how to live after transplant are just that: mine. We can become friends, chat, share ideas on how to live our lives — but ultimately your own post-transplant care team is your primary judge and jury on your important issues. You will find what is comfortable and what works for you as you move forward.

Here are some of the top hacks Rosemary and other Mayo Clinic Connect Transplants Group members identified, in hopes it will help make your life easier after transplant:

Maintaining a Healthy Diet

  • Avoid unpasteurized foods, such as dairy, juice and cider.
  • Wash food before preparing.
  • Make most of your meals at home.

Taking Your Meds

  • Write out and keep a schedule for taking your medications.
  • Create a daily medicine reminder so you don’t forget.

Flying on an Airplane

  • Wear a face mask.
  • Bring your own beverages.
  • Do not touch equipment belonging to the airline, such as blankets.
  • Get up and walk every half hour or so.

Keeping Fit

  • Wear a fitness tracker.
  • Go walking.
  • Attend water exercise class.
  • Practice yoga.
  • Consider working with a trainer.

Practicing Good Hygiene

  • Wash your hands frequently.
  • Keep hand sanitizer with you at all times.
  • Carry along a face mask to use if you feel the need.
  • Maintain general cleanliness personally and in your home.
  • Clean hands after touching money or other items many members of the public may have handled.

Managing Your Interactions

  • Avoid sick people, school children and those who’ve traveled abroad recently.
  • Encourage your family members, coworkers and others with whom you associate regularly to cover coughs or sneezes.
  • Stay away from crowds. Consider, for example, going to the 1 p.m. matinee movie instead of the evening showing.
  • Stay in a transplant patient lodging facility when traveling for transplant-related care.
  • If you have workers in your home, use disinfectant aerosol or wipes on all surfaces after they leave.
  • Try some alternatives to handshakes: American Sign Language hand sign for peace, bumping elbows or simply smiling and nicely saying, “I’ve had a transplant and my doctors ask me not to shake hands.” If you really want to shake hands, follow it with hand sanitizer.

Listening to Your Body

  • Allow yourself time to heal.
  • Don’t overdo it. Consider saying “no,” even to activities you’d enjoy, to avoid exhaustion. Know it is okay to pass on some functions.
  • Take time for yourself. Stay home, relax and take it easy.
  • Ease up on physical activities for a while.
  • Treat yourself to a nap — doze on the couch while “watching” TV.
  • Return to your hobbies as you feel interest and ability, or perhaps pursue new ones.
  • Consider whether your career is appropriate to your recovery, especially if it’s very demanding. Think about whether it might be helpful to make some changes or even retire.

Dining Out

  • Request special treatment of your food at a restaurant.
  • Set eating utensils on an extra napkin to avoid leaving them on the table.
  • Avoid eating foods that have dropped on the table or that you observe a server touching inadvertently.
  • Look out for food bits on the edge of your plate, as this may indicate where the chef touched the eating surface.
  • Drink your beverage from a straw to dispel any doubts about the cleanliness of the glasses, or take along your own water bottle.
  • Choose restaurants that have menus or menu sections for various restrictive diets.
  • Use hand sanitizer after handling a menu, condiment bottles or salt and pepper.
  • At a buffet table or salad bar, only eat food where you can observe food safety measures. Limit food you take to only those served steaming, frozen or commercially prepared, such as individually-wrapped items. Alternatively, consider reducing your visits to buffets or salad bars.
  • If you are concerned about eating food in a certain environment, eat something before you go, take your own food along or try drinking coffee instead.
  • If you are eating out at someone’s home, explain to the hosts beforehand that you have special diet needs.

We hope these hacks, which patients in the discussion group have found helpful, will be useful for you following your transplant. At the same time, however, please be sure to consult your own transplant care team if you have any questions about which tips and tricks are right for your situation.

What post-transplant hacks have worked for you?

HELPFUL LINKS

@beach757, Welcome to Mayo Connect. I am happy that you have enjoyed reading this post and hope that you found some helpful information for your future.
Have you taken a look at the Transplant Discussion Group? We have a wide variety of conversations that are happening that are related to organ transplant and organ donation. There are some that I think you might find interesting. I invite you to enter any of the discussions. https://connect.mayoclinic.org/group/transplants/

As for post surgery information, here is one articles that I want to share.
https://connect.mayoclinic.org/newsfeed-post/what-to-expect-annual-post-transplant-follow-up/
I found many articles, posted by Mayo transplant staff that look inviting to answer your question, so I am going to suggest that you take a leisurely scroll through the Newsfeed section on Transplant Pages of Mayo Connect. https://connect.mayoclinic.org/page/transplant/tab/newsfeed/

Are you anticipating a transplant? I look forward to meeting you again in one of our discussions.
Rosemary

REPLY
@rosemarya

The year 2017 is now behind us, and a Brand New Year is already underway!

I want to welcome our new members to share their ideas, their “transplant hacks”. What has been working for you? What are some ways that you find helpful to fully live your new life?
Newly transplanted members, What questions do you have as you begin to make healthy adjustments to your lifestyle?
Returning members. Have you learned anything new that you want to share?

Remember that we are all on this together – Let’s help each other:-)
Rosemary

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@beach757 Sorry for the delay in responding but I have gotten behind on these posts.
I was in pain in the hospital. I do not remember the pain, but I do remember that one night I had a problem sleeping because of it and a nurse came in and told me to never let that happen, that she could have given me some more pain meds, which she did then.
By time I was released, 6 days after the transplant surgery, I was feeling a lot better and at my first post-transplant visit a week later I was doing great. I think I progressed quicker than many because I had worked on getting in shape to some degree and that helps. It sounds like you are working at that too. I don't remember how long it was before I could drive, definitely not if you are still taking any narcotics.
I belong to a health club where I go for water exercise and regular exercise. I think you basically have to wait until your incision is well healed before doing any exercise. My main focus was the water but I assume they would not want you to do anything strenuous unless you were totally healed either.
Please feel free to ask any questions if you have more specific ones. I would be happy to respond. My transplant was on 09.23.2016 so some of it vague now. I wish very much that I had kept a journal. I intended to but somehow that fell by the wayside.
JK

REPLY
@rosemarya

The year 2017 is now behind us, and a Brand New Year is already underway!

I want to welcome our new members to share their ideas, their “transplant hacks”. What has been working for you? What are some ways that you find helpful to fully live your new life?
Newly transplanted members, What questions do you have as you begin to make healthy adjustments to your lifestyle?
Returning members. Have you learned anything new that you want to share?

Remember that we are all on this together – Let’s help each other:-)
Rosemary

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Thank you. That is the information I was looking for. I want to communicate with a patient. All the articles are too generic. I will keep a journal. Thanks again, hope to write to you soon.

REPLY

@rosemarya asked me to post a few tips that I follow. When you go to an appt, bring along your own entertainment. Don't handle waiting room materials. (I bring my Kindle and a small portable crochet project) Keep hand sanitizer nearby, bring your own pen to fill out forms, Don't be shy to use a mask if around many strangers. Watch door handles and doors, even in medical facilities and labs. Use that sanitizer anytime you eat out, after handling the menu.
Ginger

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@gingerw

@rosemarya asked me to post a few tips that I follow. When you go to an appt, bring along your own entertainment. Don't handle waiting room materials. (I bring my Kindle and a small portable crochet project) Keep hand sanitizer nearby, bring your own pen to fill out forms, Don't be shy to use a mask if around many strangers. Watch door handles and doors, even in medical facilities and labs. Use that sanitizer anytime you eat out, after handling the menu.
Ginger

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Those are great tips for everyone, @gingerw, especially as we enter the flu season. I usually have my smartphone with me which has a Kindle app with my e-books, so I can always read while I wait. I had never thought about the germs on magazines before.

REPLY
@gingerw

@rosemarya asked me to post a few tips that I follow. When you go to an appt, bring along your own entertainment. Don't handle waiting room materials. (I bring my Kindle and a small portable crochet project) Keep hand sanitizer nearby, bring your own pen to fill out forms, Don't be shy to use a mask if around many strangers. Watch door handles and doors, even in medical facilities and labs. Use that sanitizer anytime you eat out, after handling the menu.
Ginger

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Ginger, I have friends who tell me that when they knit or crochet in the waiting room at doctor's office, that their blood pressure readings are lower. Hmmm?
I have not seen any other references to that, have you?
I guess it depends on whether or not you have a simpls or intricate pattern.

REPLY
@rosemarya

Ginger, I have friends who tell me that when they knit or crochet in the waiting room at doctor's office, that their blood pressure readings are lower. Hmmm?
I have not seen any other references to that, have you?
I guess it depends on whether or not you have a simpls or intricate pattern.

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@rosemarya I can only speak for myself. Crochet relaxes me a lot. I do charity work, making baby blankets, lap robes, shawls, and hats. As a beginner, all of my patterns are fairly simple and quick, which is good because I get easily distracted or bored. Each week I join with a group of ladies for a couple of hours to crochet for Prayer Shawl Ministry; I admit that a couple of times I have nodded off! As long as I don't snore I guess it's okay. I also try to crochet for about an hour each night before bed time to relax me. Besides, if I have yarn and hook in hand I can't reach for food! But yes, my blood pressure goes down a great deal when crocheting, or doing creative work.
Ginger

REPLY
@gingerw

@rosemarya I can only speak for myself. Crochet relaxes me a lot. I do charity work, making baby blankets, lap robes, shawls, and hats. As a beginner, all of my patterns are fairly simple and quick, which is good because I get easily distracted or bored. Each week I join with a group of ladies for a couple of hours to crochet for Prayer Shawl Ministry; I admit that a couple of times I have nodded off! As long as I don't snore I guess it's okay. I also try to crochet for about an hour each night before bed time to relax me. Besides, if I have yarn and hook in hand I can't reach for food! But yes, my blood pressure goes down a great deal when crocheting, or doing creative work.
Ginger

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@gingerw @rosemarya I have never been very good at crocheting so that would probably make my BP go higher. I have been bringing a tablet/iPad with me for a long time though. I occasionally bring a book but I get the news delivered to me from numerous sources so it’s a good time to catch up.
JK

REPLY
@contentandwell

@gingerw @rosemarya I have never been very good at crocheting so that would probably make my BP go higher. I have been bringing a tablet/iPad with me for a long time though. I occasionally bring a book but I get the news delivered to me from numerous sources so it’s a good time to catch up.
JK

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@contentandwell Learning anything new can be a stressor no matter what it is. But the challenge and perseverance made me want to continue. Now I'm so glad I did! My work is for charity, so it's important that the thoughts and prayers that go into the work are calming. Win-win!
Ginger

REPLY
@gingerw

@contentandwell Learning anything new can be a stressor no matter what it is. But the challenge and perseverance made me want to continue. Now I'm so glad I did! My work is for charity, so it's important that the thoughts and prayers that go into the work are calming. Win-win!
Ginger

Jump to this post

@gingerw I used to do a lot of crewel and occasionally needlepoint but my vision isn’t very good for that type of work now. I did a number of nice pieces and still have some that I never got around to doing. A friend’s husband kept the accounts for a big needlework company so he would get us kits half price.
JK

REPLY
@gingerw

@rosemarya I can only speak for myself. Crochet relaxes me a lot. I do charity work, making baby blankets, lap robes, shawls, and hats. As a beginner, all of my patterns are fairly simple and quick, which is good because I get easily distracted or bored. Each week I join with a group of ladies for a couple of hours to crochet for Prayer Shawl Ministry; I admit that a couple of times I have nodded off! As long as I don't snore I guess it's okay. I also try to crochet for about an hour each night before bed time to relax me. Besides, if I have yarn and hook in hand I can't reach for food! But yes, my blood pressure goes down a great deal when crocheting, or doing creative work.
Ginger

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Ginger, I just returned home from my monthly prayer shawl gathering. I introduced the prayer shawl ministry to a group of ladies at my church after I returned home from my transplant. I had been fortunate to have received one during my own time of need, and I wanted to share that gift with others.
As an organ recipient, I enjoy being able to remain active in outreach and volunteering, even during the flu season when I choose to remain away from crowds.

REPLY

This remains one of favorite "transformations" in the Connect community. What started out as a discussion in the Transplant Group here:

> Living Life after your Transplant https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/

was transformed into the blog post above. Who would've thought that a conversation of thousands of words could be organized into a concise, very practical list of tips. I like to call it patient education by patients for patients.

Now I have an additional surprise. Look how the writers and producers of the Mayo Clinic app transformed your words into a short video.

http://www.youtube.com/watch?v=0ev221U7jaU

This video is shared with hundreds if not thousand of patients via the Mayo Clinic app, but was also uploaded to Mayo's YouTube channel https://www.youtube.com/watch?v=0ev221U7jaU

Kudos to all who took part.
Enjoy it. Be proud of it. Share it.

REPLY
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