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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
- Explore Mayo’s Transplant Center.
- Request an appointment.
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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
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5 Reactions@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
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5 ReactionsGinger, 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.
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4 ReactionsThis 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.
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5 ReactionsFor me exercise and activity has been the driving force of my recovery. The stronger I become physically, the more strength I gain mentally. I started out walking to the corner of my road and back--maybe 150 yards total. Then in a week, I added carrying a five pond weight in each hand. After a couple of weeks I had worked up to one and a half miles, still carrying my weights. Now at almost three months post transplant, I am comfortable with a two-mile walk--about 40 minutes.
It has been a continual challenge to get back to my typical, pre-transplant schedule--up and dressed by five am, writing or reading until seven, then work. This week coming into my three month mark I have achieved that. I will get back to my yoga class tonight for the first time since transplant, and later this week rejoin my Thursday night music group. I also feel that I have built the stamina through walking to resume day-off outings with my wife. Last week we went out to lunch and walked around downtown Portsmouth, NH shopping and browsing in shops.
The best advice I received from a fellow transplant patient was to begin to challenge my self with new activities each day. I began by sweeping the garage floor. Small steps are big steps. The next day I cooked our supper--it was my first time in the kitchen in six or seven weeks. It took me about forty minutes, and when I finally got what I had prepared into the oven, I was exhausted. But this was a turning point. It felt good to resume normal stuff. This weekend I attempted some yard work. I only lasted for an hour or so, but it felt so good to get done what I could.
Tomorrow will be my first full day on a job site. ( I am a carpenter) We will be installing shelves and building a desk in a condo. I never thought I would get there. Nine weeks ago I was in a rehab hospital learning to walk again.
For me recovery has been a set of steps. Setting goals daily and weekly. Trying is important. Sometimes I just can't, and sometimes I push through the constant headache and awful med side effects and sit at my desk all day. Building myself moment by moment, day by day. I also feel strongly that using whatever resources and support available is crucial. Family, doctors, therapists, trainers, support groups--whatever it takes to work through the emotional low points and stay positive and moving forward. Post transplant life is a new normal to adjust to. I have limits, but I will challenge those limits each day striving to live joyfully.
Be well and stay strong.
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4 Reactions@mostlybill it sounds as if you are making progress in your post-transplant life. I think in time you will find very little difference in how you feel Post-transplant vs how you were before, and if you comparing to after having the health problems that led to transplant, that those differences will all be positive. I too found exercise to be very helpful. I belong to a health club and returned there as soon as I got the OK.
I did not have the problems that you describe. From the reaction of my transplant team I guess I was unusual. At the time I thought they were just being nice.
It seems early to get off prednisone but hopefully they will be able to at least reduce your dose.
You mention Portsmouth, one of our favorite cities. We love going out to dinner there, and I enjoy walking around the city too. We hope to move, downsize, within the next year. Portsmouth would be a top choice if it was more affordable.
I presume you are in MA or NH. My transplant was at Mass General, was yours there also? If so, based on your post-transplant appointment being on Thursday we did not have the same surgeon, mine does post-transplant clinic on Wednesdays.
Looking forward to hearing how Thursday’s appointment goes.
JK
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4 ReactionsI like this blog of transplant recipients. I am 7 weeks post kidney transplant and the recovery has been so slow but steady. I still have a few more weeks to go into January I think. I wondered if anyone has a bump where their old peritoneal catheter used to be. I do, and it feels like there is a mass inside too. The outside lump has shrunk so I pray the inside mass shrinks too. I hear they can get infected and I pray that does not happen. This is the holidays and birthdays and I am sad that I have to restrict time with some family. And yet I have a new life where I have to be extra safe. I liked the tips here as my transplant center has not been that sharing with tips on safety. Happy Holidays to you! BB
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4 Reactions@blbird33, I'm glad that you have discovered the transplant Blog section on Connect! I am especially proud of this particular blog that was inspired by the comments of members like you and me.
I had acute kidney failure and had a hemodialysis port in my chest for only 2-3 months. It removed when was discharged from outpatient care at the same time as my liver and kidney surgical staples were removed when I was ready to return to my home several states away.
As for peritoneal catheter, I don't know about the kind of bumps that you describe. However, if the area hurts, is red, warm or if you have a fever, please contact your transplant provider.
Bluebird, I have found a discussion for you. It is a good place to post your concerns about your old peritoneal catheter.
- Anyone shut down their kidney dialysis fistula after transplant?
https://connect.mayoclinic.org/discussion/transplant-shut-down-kidney-dialysis-fistula/
Just click, and join the discussion.
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