Transplant

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PUBLIC PAGE
Wed, Aug 30, 2017 8:03am

Top Transplant Hacks: Patients Share Their Best Tips and Tricks

By Mayo Clinic Transplant Staff, @mayoclinictransplantstaff

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

I continue to learn so very much through the generous sharing by all of our transplant members on Mayo Connect. That is my best tip to living with a transplant – To continue to support and learn from each other by sharing.

Thank you to Transplant Staff for guiding us.

Health and Hope to all,
Rosemary – Liver/Kidney, 2009

@rosemarya Many great suggestions here. Just a few comments to add to this.

We are doing some traveling in the next few months and I am opting to stay in VRBOs. I balked at first because part of a vacation for me had always been eating out, but then I realized what a benefit it would be to have more control over what I ate.

I just did yoga for the first time on Sunday. It was a bit difficult for me because there was a lot of standing on one foot. I really cannot do that with my compromised knees. I think there is a difference between hatha yoga and vinyasa, and am wondering if vinyasa might work better for me.

My transplant center does not want me to eat at buffets or salad bars at all. They say not just because of the germs floating around but also because sometimes the foods are not kept at optimum temperatures. I did eat at a small private one recently but my transplant center even frowns on that. I made sure I got up there at the front of the line! I have gone to a couple of events hosted by family members and they have arranged to have a plate prepared for me in the kitchen. If you are close to a person they can easily request that.

JK

@rosemarya Rosemary I neglected to mention one thing in my previous response.

I find that using my”smart phone” alarms is a perfect way to stay on top of taking my medications at the correct time. I put the meds weekly in a box, and when that timer goes off I know to take them. I really do not know how I would remember them as well without that aid.

Right now I have four alarms set.
The first pack my meds if I am going to my health club to be there at 9:00.
The second one to take my pills.
The third one to fast for two hours before I take my imodium (the immunosuppressants have caused me to need imodium)
and the fourth to take the imodium.
The alarms really keep me on track.
JK

@contentandwell JK- phone alarms are terrific reminders. I depend on mine, too!
Thanks for bringing this tool to the attention of all.
Rosemary

@contentandwell

@rosemarya Many great suggestions here. Just a few comments to add to this.

We are doing some traveling in the next few months and I am opting to stay in VRBOs. I balked at first because part of a vacation for me had always been eating out, but then I realized what a benefit it would be to have more control over what I ate.

I just did yoga for the first time on Sunday. It was a bit difficult for me because there was a lot of standing on one foot. I really cannot do that with my compromised knees. I think there is a difference between hatha yoga and vinyasa, and am wondering if vinyasa might work better for me.

My transplant center does not want me to eat at buffets or salad bars at all. They say not just because of the germs floating around but also because sometimes the foods are not kept at optimum temperatures. I did eat at a small private one recently but my transplant center even frowns on that. I made sure I got up there at the front of the line! I have gone to a couple of events hosted by family members and they have arranged to have a plate prepared for me in the kitchen. If you are close to a person they can easily request that.

JK

Jump to this post

@contentandwell – I used to enjoy not cooking on vacation also but once I tried them VRBOs save you so much money (groceries cheaper than restaurants) and if you choose to go out you can splurge because you haven’t been eating out your entire vacation. Plus we went grocery shopping and cooked as a family so it wasn’t as much of a chore but rather a nice family time.

I have done vinyasa yoga and it was doable for me who had been inactive for years and overweight. I don’t know what heath yoga is like and perhaps it was also because I was in a “restorative” class for people with chronic illnesses but I didn’t do much standing on one foot.

Lynn

@contentandwell

@rosemarya Rosemary I neglected to mention one thing in my previous response.

I find that using my”smart phone” alarms is a perfect way to stay on top of taking my medications at the correct time. I put the meds weekly in a box, and when that timer goes off I know to take them. I really do not know how I would remember them as well without that aid.

Right now I have four alarms set.
The first pack my meds if I am going to my health club to be there at 9:00.
The second one to take my pills.
The third one to fast for two hours before I take my imodium (the immunosuppressants have caused me to need imodium)
and the fourth to take the imodium.
The alarms really keep me on track.
JK

Jump to this post

@contentandwell – I depend on my phone to remind me to take my research meds because I start in the morning when I wake up (this time varies ) and then my second dose is 8 hours later so that varies also, plus it is in the middle of the afternoon vs. at a meal. I learned not to care where I am when the alarm goes off because I would forget if I did not have the alarm.

Lynn

@contentandwell

@rosemarya Many great suggestions here. Just a few comments to add to this.

We are doing some traveling in the next few months and I am opting to stay in VRBOs. I balked at first because part of a vacation for me had always been eating out, but then I realized what a benefit it would be to have more control over what I ate.

I just did yoga for the first time on Sunday. It was a bit difficult for me because there was a lot of standing on one foot. I really cannot do that with my compromised knees. I think there is a difference between hatha yoga and vinyasa, and am wondering if vinyasa might work better for me.

My transplant center does not want me to eat at buffets or salad bars at all. They say not just because of the germs floating around but also because sometimes the foods are not kept at optimum temperatures. I did eat at a small private one recently but my transplant center even frowns on that. I made sure I got up there at the front of the line! I have gone to a couple of events hosted by family members and they have arranged to have a plate prepared for me in the kitchen. If you are close to a person they can easily request that.

JK

Jump to this post

@lcamino Thanks Lynn, I do want to try vinyasa but things have been sort of crazy recently so I haven’t even had the time to check out that class schedule. The one I went to was Hatha, and another yoga instructor told that me the leader I had that day does tend to do a lot of the standing on one foot.
I am going to start looking for classes I can do after my TKR, I need to do something, maybe even chair exercises.

Regarding cooking, the other good thing is that my son is a great cook so I know he will do some too. We are thinking about going out there to L.A. for Christmas because he will have just been here for his sister’s wedding celebration. I was kidding that we have to go, if we don’t who will cook our Christmas dinner? He has done a spectacular job the last few years with filet mignons, and rack of lamb. No further description, I don’t want you drooling on your keyboard. 😉
JK

Liked by cehunt57

@rosemarya

@contentandwell JK- phone alarms are terrific reminders. I depend on mine, too!
Thanks for bringing this tool to the attention of all.
Rosemary

Jump to this post

@rosemarya @lcamino I really cannot imagine how I would remember without the phone alarm. I am so glad we live in a time with aids like that.
JK

@contentandwell

@rosemarya Many great suggestions here. Just a few comments to add to this.

We are doing some traveling in the next few months and I am opting to stay in VRBOs. I balked at first because part of a vacation for me had always been eating out, but then I realized what a benefit it would be to have more control over what I ate.

I just did yoga for the first time on Sunday. It was a bit difficult for me because there was a lot of standing on one foot. I really cannot do that with my compromised knees. I think there is a difference between hatha yoga and vinyasa, and am wondering if vinyasa might work better for me.

My transplant center does not want me to eat at buffets or salad bars at all. They say not just because of the germs floating around but also because sometimes the foods are not kept at optimum temperatures. I did eat at a small private one recently but my transplant center even frowns on that. I made sure I got up there at the front of the line! I have gone to a couple of events hosted by family members and they have arranged to have a plate prepared for me in the kitchen. If you are close to a person they can easily request that.

JK

Jump to this post

@contentandwell – The yoga place just 5 mins. from me offers chair yoga and restorative yoga. Maybe you can find those options.I have also seen videos for chair yoga but I’m sure your surgeon will have you hooked up with a physical therapist very quickly and they can give you some ideas too. Swimming is probably great post surgery and they do have you up and moving quite quickly after total joint replacements as it helps with healing so I’m sure you will be fine.
Lynn

@contentandwell

@rosemarya Many great suggestions here. Just a few comments to add to this.

We are doing some traveling in the next few months and I am opting to stay in VRBOs. I balked at first because part of a vacation for me had always been eating out, but then I realized what a benefit it would be to have more control over what I ate.

I just did yoga for the first time on Sunday. It was a bit difficult for me because there was a lot of standing on one foot. I really cannot do that with my compromised knees. I think there is a difference between hatha yoga and vinyasa, and am wondering if vinyasa might work better for me.

My transplant center does not want me to eat at buffets or salad bars at all. They say not just because of the germs floating around but also because sometimes the foods are not kept at optimum temperatures. I did eat at a small private one recently but my transplant center even frowns on that. I made sure I got up there at the front of the line! I have gone to a couple of events hosted by family members and they have arranged to have a plate prepared for me in the kitchen. If you are close to a person they can easily request that.

JK

Jump to this post

@lcamino, I definitely plan to look into this, both at my club and at the local hospital’s center where they have physical fitness classes both for seniors and younger.
The ortho does not recommend a PT, they prescribe one and you choose whom you want that to be. I have had two occasions of having one that came to the house. I really liked the guy the first time so I requested him the second time too. You can only have that as long as you are “housebound”. So, if you go out at all and they find out you have to reimburse Medicare as I understand it, which is incentive to stop the home PT — I do not like being stuck in the house. Then I continue with another PT, also one whom I really like, so I think I will be all set on that but then it is up to the patient to find any other activities in which to engage.
JK

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

@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

Jump to this post

So happy to read these posts. Can you direct me to a post re after surgery. How much pain, how much time in hospital, when can I drive again, when can I get back to the YMCA. Been a hermit since the flu epidemic and no longer feel strong as I did when excerciseing. Thanks for sharing.

@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

Liked by cehunt57

@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

Jump to this post

@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

@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

Jump to this post

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.

Liked by cehunt57

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