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

@contentandwell

Rosemary, thank you for your suggestions. I am magazine-phobic at this point. Whenever I go somewhere like a doctor’s office or anywhere where I may have to wait, I bring my Nexus Tablet with me to occupy myself so as to not touch magazines. Heck, especially in a doctor’s office some people there are sick of course. I have mentioned that to a number of doctors and all thought that was smart of me, and this was well before my transplant.
I read a few years back that the most unsanitary place in a restaurant is the menu! Of course when you think of it, how many people have handled it?

JK

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@rosemarya Rosemary, I am trying to get more knowledgeable as I go along. Stupid me, the thought of money never even occurred to me!

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@rosemarya

Thank you for reply. Painting is going well. The tarps are magnificent and cover everything. My biggest fear was if someone would bring in flu or something. But the only coughing from crew is asthma and smoking related. We are having a mild weather spell and we are able to let some fresh air in during the sunny days. When they have gone home at end of day, I let loose with the disinfectant aerosol and wipe all surfaces with disinfectant wipes or cleaner. Rosemary

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@rosemarya Rosemary, when we went to Italy I had only had a couple of short lived HE episodes, plus the husband in the couple we are close with and frequently travel with is a doctor, albeit a OB/GYN, but he has a lot of general knowledge. He, along with a friend in NYC, thought my problems were due to medications — a BP medication, Vesicare, and one other, maybe cholesterol, and suggested I get off of those meds. My BP was not that high and now generally goes from the teens to 130 on the high number and is in the 60’s on the lower number so it is not a problem. I told the PCP I had then and went three months with no problem so we thought that must have been it. Unfortunately after three months I did have another episode, so obviously it was coincidental that after stopping them I went for so long without an episode. My episodes almost all lasted a matter of hours. I would go to bed and wake up fine.

That really is great that they paid. I had very low hemoglobin and hematocrit counts in August and ended up going by ambulance from here in NH to Boston — the doctor at the hospital in Manchester was obviously not comfortable with me. The ambulance ride, chatting away with the EMT was the best part of my problems! I must have been one of his easier patients because I felt fine. They sent me by ambulance though because apparently if my numbers dropped any lower I could have had cardiac arrest. I just felt debilitatingly tired. As you know, it is a bit scary to discover you are in such a life-death predicament. After my initial alarm though I felt pretty calm about it.

I hope you have a good weekend as well. Believe it or not the last three days the temperatures here in NH have been 68 – 69, warmer than CA or FL from what I have seen. My son lives in southern CA so he is always giving me a hard time about how cold it is here but he goes to one ski area or another almost every weekend, this weekend at Mammoth, but being cold to do something you love is different than just living it it every day for a number of months. I know these temperatures will end shortly and there will be more snow, something I presume you see very infrequently in Kentucky. It will be May before we see blooms up here.

JK

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@contentandwell

Rosemary, thank you for your suggestions. I am magazine-phobic at this point. Whenever I go somewhere like a doctor’s office or anywhere where I may have to wait, I bring my Nexus Tablet with me to occupy myself so as to not touch magazines. Heck, especially in a doctor’s office some people there are sick of course. I have mentioned that to a number of doctors and all thought that was smart of me, and this was well before my transplant.
I read a few years back that the most unsanitary place in a restaurant is the menu! Of course when you think of it, how many people have handled it?

JK

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@contentandwell, Please. I beg you – do not obsess over the money/germ thing! I meant for it to make a point, that we can become overly obsessive about our contact with germs. Fact is germs are going to be everywhere, and if we take our health and our new life seriously, we will take the necessary precautions per our post transplant directives. And we will continue to share and support each other.
Eat healthy, stay active, clean your hands, and Enjoy Life 🙂
Rosemary

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@contentandwell

Rosemary, thank you for your suggestions. I am magazine-phobic at this point. Whenever I go somewhere like a doctor’s office or anywhere where I may have to wait, I bring my Nexus Tablet with me to occupy myself so as to not touch magazines. Heck, especially in a doctor’s office some people there are sick of course. I have mentioned that to a number of doctors and all thought that was smart of me, and this was well before my transplant.
I read a few years back that the most unsanitary place in a restaurant is the menu! Of course when you think of it, how many people have handled it?

JK

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@rosemarya, Rosemary, I really am not obsessing but trying to be cautious. I went to church yesterday, the late afternoon mass, and ended up shaking hands with quite a few people. When I got out to my car I used sanitizer on my hands so I think that helps. In the meantime I do not touch my face or anything.
Thanks for your post. I pretty much am enjoying life, but I have to admit, not having an ounce of mesomorph in me I am getting really weary of going to my health/sports club. I’d rather be home curled up with a book, or checking things out on the computer, or a host of other things like being social with non-club friends. I went a lot last week, including strong workouts yesterday and Friday, so today I am taking off. I swear, Friday and Saturday’s water instructors were over-caffeinated. Phew.
JK

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@contentandwell

Rosemary, thank you for your suggestions. I am magazine-phobic at this point. Whenever I go somewhere like a doctor’s office or anywhere where I may have to wait, I bring my Nexus Tablet with me to occupy myself so as to not touch magazines. Heck, especially in a doctor’s office some people there are sick of course. I have mentioned that to a number of doctors and all thought that was smart of me, and this was well before my transplant.
I read a few years back that the most unsanitary place in a restaurant is the menu! Of course when you think of it, how many people have handled it?

JK

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@contentandwell, Hint – carry a small hand sanitizer in your pocket or purse. I do 8:15 mass, and enjoy my ‘safe spot’ while playing my violin. However, during lent, we will not be using instrumental music, so I’m joining you in the congregation!
Rosemary

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@contentandwell

Rosemary, thank you for your suggestions. I am magazine-phobic at this point. Whenever I go somewhere like a doctor’s office or anywhere where I may have to wait, I bring my Nexus Tablet with me to occupy myself so as to not touch magazines. Heck, especially in a doctor’s office some people there are sick of course. I have mentioned that to a number of doctors and all thought that was smart of me, and this was well before my transplant.
I read a few years back that the most unsanitary place in a restaurant is the menu! Of course when you think of it, how many people have handled it?

JK

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@contentandwell, It is okay, to ease up on your on your physical activities, and even your social activities. I have discovered that my body, since transplant, seems to take 2-3 times longer than a ‘normal’ person to recover from anything. I have also learned to treat myself to ‘time out’ where I will stay home and do nothing except relax. In fact, my husband will encourage this when he sees me wearing down. He will say, “Do you have to keep going, Why don’t you stay in tomorrow and take it easy. I don’t want you getting sick.”

JK, you will learn to listen to your body as time goes on, it will tell you what when you do too much. We transplant recipients have special circumstances that the majority of population does not understand, so continue to be your own best health advocate.

BTW – I can still out walk and outpace most of my friends, and I do love a good hike:-) Life is Good
Rosemary

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@contentandwell

Rosemary, thank you for your suggestions. I am magazine-phobic at this point. Whenever I go somewhere like a doctor’s office or anywhere where I may have to wait, I bring my Nexus Tablet with me to occupy myself so as to not touch magazines. Heck, especially in a doctor’s office some people there are sick of course. I have mentioned that to a number of doctors and all thought that was smart of me, and this was well before my transplant.
I read a few years back that the most unsanitary place in a restaurant is the menu! Of course when you think of it, how many people have handled it?

JK

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@rosemarya Rosemary, I actually do have sanitizer in individual packets that I never remember to bring. I will have to be better about that.

Overall my stamina is really good, I just do not enjoy exercise. My son is a real mesomorph and goes almost daily to his gym out in CA and lifts and stuff and then goes home and takes his dog for a run. He teases me that I go to the club more than he goes to his. I do have those days, generally about once a week, when I skip the water class in the morning feeling I would probably keel over and drown if I went. I sleep a bit more and do my own pool thing in the afternoon. My daughter doesn’t really go to a gym anymore unfortunately. She lives in NYC though and does get a LOT of walking in.

My husband is the same as yours, thinking I should let up a bit. He used to go about three times a week to a more basic gym and now goes much less frequently but feels pressured to go because I go so much. He won’t pay the prices at my club but I do because it is the closest place that has a pool.

Walking is not great for me because of my knees. I have a friend who will go to Boston and walk all over the place. She wears a fitbit and often walks over 10 miles! She says she likes to get exercise because then she can eat more! She is not an ounce overweight.

JK

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Hi all,
This discussion came to the attention of my colleagues @kequick and @lisalucier who write the blog posts for the Transplant page on Connect (https://connect.mayoclinic.org/page/transplant/). They’d like to use your tips and life hacks for living well after transplant to create a blog post. I think this is a fabulous idea. Who knows better than you guys, right? For recipients, by recipients. What do you think?

If you’re new to this discussion, please take a minute to read through the past suggestions. Add your own. @lupedelarosa12 @skittles25 @chattykathy @cehunt57 @timfair @linda59 @eileenheart @wkary @swordfish @linmarie @maryallard @vacamrc @metallicpea

The post will be written later this summer or early fall. That’s gives us time to gather more of your tips. So I’ll repeat @rosemarya‘s original question:

“Share your practical living tips and ideas about how you ‘live’ after your transplant. For example: hand washing and germ prevention, eating out; attending public events; daily medicine reminder. What healthy practices work for you?”

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@colleenyoung

Hi all,
This discussion came to the attention of my colleagues @kequick and @lisalucier who write the blog posts for the Transplant page on Connect (https://connect.mayoclinic.org/page/transplant/). They’d like to use your tips and life hacks for living well after transplant to create a blog post. I think this is a fabulous idea. Who knows better than you guys, right? For recipients, by recipients. What do you think?

If you’re new to this discussion, please take a minute to read through the past suggestions. Add your own. @lupedelarosa12 @skittles25 @chattykathy @cehunt57 @timfair @linda59 @eileenheart @wkary @swordfish @linmarie @maryallard @vacamrc @metallicpea

The post will be written later this summer or early fall. That’s gives us time to gather more of your tips. So I’ll repeat @rosemarya‘s original question:

“Share your practical living tips and ideas about how you ‘live’ after your transplant. For example: hand washing and germ prevention, eating out; attending public events; daily medicine reminder. What healthy practices work for you?”

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Hi Colleen,
I'm not a recipient but maybe a site for loved ones to share same might be good?
ThxLinda 

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@powderpuf

What type of transplant did you have?

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@coastalgirl – I’m not sure you will get this since you last posted about a year ago but I just found this conversation. I am 50 years old and have PKD also. I will need a transplant in about one year. Did you have a living donor? If so, I have some follow up questions for you. Also, I’m wondering if you had a nephrectomy when you had your transplant and the reason why or why not.

Lynn

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Hi, The ASL sign for peace instead of handshaking is a wonderful idea. I am three months out from my kidney transplant and have been bumping arms with people instead of shaking their hands but this is a better alternative.
Thanks

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@colleenyoung

Hi all,
This discussion came to the attention of my colleagues @kequick and @lisalucier who write the blog posts for the Transplant page on Connect (https://connect.mayoclinic.org/page/transplant/). They’d like to use your tips and life hacks for living well after transplant to create a blog post. I think this is a fabulous idea. Who knows better than you guys, right? For recipients, by recipients. What do you think?

If you’re new to this discussion, please take a minute to read through the past suggestions. Add your own. @lupedelarosa12 @skittles25 @chattykathy @cehunt57 @timfair @linda59 @eileenheart @wkary @swordfish @linmarie @maryallard @vacamrc @metallicpea

The post will be written later this summer or early fall. That’s gives us time to gather more of your tips. So I’ll repeat @rosemarya‘s original question:

“Share your practical living tips and ideas about how you ‘live’ after your transplant. For example: hand washing and germ prevention, eating out; attending public events; daily medicine reminder. What healthy practices work for you?”

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Linda,
Family members who support those receiving and donating an organ are also welcome to this group. We also have a group on Connect dedicated to caregivers https://connect.mayoclinic.org/group/caregivers/ We’d love for you to join us there.

How is your son doing?

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@dave12

Hi, The ASL sign for peace instead of handshaking is a wonderful idea. I am three months out from my kidney transplant and have been bumping arms with people instead of shaking their hands but this is a better alternative.
Thanks

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@dave12, I want to extend my virtual handshake to you to welcome you to Mayo Connect. It is always a pleasure for me to meet another transplant recipient. Simply reading that you are 3 months out from your transplant is giving me a big smile..
Thank you for sharing how the ASL handshake option is something that you can use as you progress onward to a healthy and active life.go forward to a normal life.

@dave12, I invite you to read and to join into any of our transplant discussions. I know that there are members who would like to meet you. One particular discussion that might interest you is “Celebrate Your Transplant Blessings”. What are some blessings that you have realized at 3 months post transplant? Did you receive your kidney from a living donor or a deceased donor? https://connect.mayoclinic.org/discussion/celebrate-your-transplant-blessings/

I am looking forward to hearing about your experience.
Rosemary

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@powderpuf

What type of transplant did you have?

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I had a Kidney transplant in 2015

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@powderpuf

What type of transplant did you have?

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@peterm53 – Thanks for responding. Was your transplant from a living or deceased donor? I seeking a living donor. I’m also wondering how quickly you recovered and what your quality of life is post transplant.

Lynn

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