This and That and Talk - My Transplant

Posted by Rosemary, Volunteer Mentor @rosemarya, Apr 9, 2017

As our Mayo Connect community grows, I am constantly meeting organ transplant members on a wide variety of forums with a wide range of issues that are not directly transplant specific. However, because we are all transplant recipients, we have a special connection: a unique journey and best of all – a new life! We don’t always need help or advice. Many times we just want to chat with someone like us! That is my purpose in starting This and That and Talk.

Drop in and say ‘Hi’. You are welcome anytime.

What do you want t to talk about? What words can you offer to someone who is on the journey? Do you have any questions for another recipient?

@rosemarya

Are you a transplant patient or recipient? Have you had to deal with weight issues pre or post transplant?

Myself, I was wearing x-large sweat suits pre transplant due to ascites. And post transplant I could wear regular clothes in a small size. Now I have migrated back to my ‘normal’ medium size. For me it is a constant struggle to maintain that weight. I am a liver/kidney recipient, but I think that this issue relates to all of us. Sound familiar to anyone?
Please join and add your experiences.

@chattykathy, @contentandwell, @2011panc, have already shared some information on another forum. I extend the invitation to continue your conversation here on Transplant group.
Rosemary

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Sorry for my late response. Life has been busy. I see a podiatrist for my plantar fasciitis. I wear expensive sneakers all the time, have custom insoles and try to do my stretching 3x a day (I have missed the last week though – oops). I have had a medrol pack (burst of an oral steroid) and that worked wonders until it wore off. Tomorrow I think I’m getting a steroid injection. I do fine when I stay off my feet but once I am active it takes me a day or two to recover, but at least I’m recovering because that wasn’t happening before. Last week I flew to Rochester for my Mayo appointment and with the walking at Mayo and the Chicago airport I walked 10 miles that day! It felt great to be active but my feet really paid the price. I started walking my dog for a mile a day every other day for the past few days and it has been so nice to get outside and enjoy the nice weather. I’m supposed to exercise in a less demanding way so we will see what my podiatrist says tomorrow.

I’m back on the wagon for counting my calories and trying to build up my exercise. I use an app called My Plate to track food, water intake, and exercise. It has helped me learn that my weakness is what I drink. I’m in a study at the Mayo Clinic that makes me very thirsty so I drink about 150 oz a day (just over a gallon of liquid). I get tired of only drinking water so have a strawberry lemonade or juice and they are loaded with calories.

@rosemarya

Are you a transplant patient or recipient? Have you had to deal with weight issues pre or post transplant?

Myself, I was wearing x-large sweat suits pre transplant due to ascites. And post transplant I could wear regular clothes in a small size. Now I have migrated back to my ‘normal’ medium size. For me it is a constant struggle to maintain that weight. I am a liver/kidney recipient, but I think that this issue relates to all of us. Sound familiar to anyone?
Please join and add your experiences.

@chattykathy, @contentandwell, @2011panc, have already shared some information on another forum. I extend the invitation to continue your conversation here on Transplant group.
Rosemary

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@icamino, thanks, I will check out myplate and see how it compares to myfitnesspal.
10 miles! Wooohooo, that’s great! I did five miles the other day and was exhausted. I don’t think I could do more than that. My pool walking really helps, diminishing the impact.
JK

@rosemarya

Are you a transplant patient or recipient? Have you had to deal with weight issues pre or post transplant?

Myself, I was wearing x-large sweat suits pre transplant due to ascites. And post transplant I could wear regular clothes in a small size. Now I have migrated back to my ‘normal’ medium size. For me it is a constant struggle to maintain that weight. I am a liver/kidney recipient, but I think that this issue relates to all of us. Sound familiar to anyone?
Please join and add your experiences.

@chattykathy, @contentandwell, @2011panc, have already shared some information on another forum. I extend the invitation to continue your conversation here on Transplant group.
Rosemary

Jump to this post

@contentandwell
I see a podiatrist, have a really good shoe, custom inserts etc. These things were no longer sufficient once I started exercising so the doctor is helping me get through it. I need to rest the foot which means I can exercise but not by walking my dog. I can bike, swim etc. but I just haven’t gotten in the habit. It took me a long time to get that pattern and now I’m trying to change.Thanks for your input.

@rosemarya

Are you a transplant patient or recipient? Have you had to deal with weight issues pre or post transplant?

Myself, I was wearing x-large sweat suits pre transplant due to ascites. And post transplant I could wear regular clothes in a small size. Now I have migrated back to my ‘normal’ medium size. For me it is a constant struggle to maintain that weight. I am a liver/kidney recipient, but I think that this issue relates to all of us. Sound familiar to anyone?
Please join and add your experiences.

@chattykathy, @contentandwell, @2011panc, have already shared some information on another forum. I extend the invitation to continue your conversation here on Transplant group.
Rosemary

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@contentandwell, I plan to check out mightinesspal too. Let me be clear, the 10 miles was NOT all at once! I walked 1 mile with my dog today and was dragging by the end. We both have to get back in shape. I’m going to ask my podiatrist about waling in the pool because I have thought of that but I’m not suppose to walk barefoot. Sometimes standing in the shower is too much and I have to wear my crocs.

@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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@chattykathy
Sorry it’s been a long time for me to respond to your post above but I can’t ignore your comment that gyms will not allow you to join due to your blindness. Based on the ADA this does not sound legal. In fact, they should be making the gym accessible to you due to your disability. If you really want to exercise at a gym you should be able to push this issue. I understand if you do not want to do so but some simple research online might confirm my hunch that gyms can not reject you for membership due to your blindness based on the ADA.

@rosemarya

Are you a transplant patient or recipient? Have you had to deal with weight issues pre or post transplant?

Myself, I was wearing x-large sweat suits pre transplant due to ascites. And post transplant I could wear regular clothes in a small size. Now I have migrated back to my ‘normal’ medium size. For me it is a constant struggle to maintain that weight. I am a liver/kidney recipient, but I think that this issue relates to all of us. Sound familiar to anyone?
Please join and add your experiences.

@chattykathy, @contentandwell, @2011panc, have already shared some information on another forum. I extend the invitation to continue your conversation here on Transplant group.
Rosemary

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@lcamino I, and most of the other people in the water aerobics, wear water shoes. If you plan to get any try to get ones that are not too enclosed. When I first started this, probably about six years ago, I had water shoes that were like Mary Janes (from Lands End). I found that because they were more enclosed they got really musty smelling. I have some now that I bought in The Walking Store, but you can buy them in many places for many prices. If I walk vigorously in the pool I sometimes slip if I don’t have the shoes on for traction. I don’t want to slip and fall in because I wear hearing aids — they can withstand a brief immersion and have but I hate to chance it. If your crocs have a back they would probably work for you too.
JK

@rosemarya

Are you a transplant patient or recipient? Have you had to deal with weight issues pre or post transplant?

Myself, I was wearing x-large sweat suits pre transplant due to ascites. And post transplant I could wear regular clothes in a small size. Now I have migrated back to my ‘normal’ medium size. For me it is a constant struggle to maintain that weight. I am a liver/kidney recipient, but I think that this issue relates to all of us. Sound familiar to anyone?
Please join and add your experiences.

@chattykathy, @contentandwell, @2011panc, have already shared some information on another forum. I extend the invitation to continue your conversation here on Transplant group.
Rosemary

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@lcamino, I admire your attitude and enthusiasm. And your healthy and proactive approach will be a great help for when it is time for transplant. I was told that, and it is true for me. I suspect that those Mayo folks have stressed that with you, too
Rosemary

@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

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Hello; I have been out of town for a few days enjoying the holiday with my sister. I took this morning to catch up on the conversations here. I know about some of the ADA requirements for accessibility. I live in a very small town with only 2-3 gyms. I am considering asking my PCP about PT for balance issues. I have not heard back from the yoga thing. I will call again and ask about home instruction for a few moves and will see how that goes. I will see nephrologist next week and listen to his suggestions also. I am weaning myself off sugar (as little intake).

Have you been seeing dermatology for skin followups since transplant? Lets not forget to keep our skin checks per transplant team.

I hope all of you have a blessed day, CK

@rosemarya

Are you a transplant patient or recipient? Have you had to deal with weight issues pre or post transplant?

Myself, I was wearing x-large sweat suits pre transplant due to ascites. And post transplant I could wear regular clothes in a small size. Now I have migrated back to my ‘normal’ medium size. For me it is a constant struggle to maintain that weight. I am a liver/kidney recipient, but I think that this issue relates to all of us. Sound familiar to anyone?
Please join and add your experiences.

@chattykathy, @contentandwell, @2011panc, have already shared some information on another forum. I extend the invitation to continue your conversation here on Transplant group.
Rosemary

Jump to this post

@rosemarya, @lcamino I am sure my good recovery had a lot to do with the fact that up until the very end when things went downhill quickly I was doing a lot of exercise and watching my diet. I think my recovery owes a lot to that AND to the skill of my transplant surgeon, to whom I will forever be grateful.
JK

@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

Jump to this post

@chattykathy Dermatologist? I had a check up during all those exams and tests prior to being listed as a candidate but I don’t believe anyone has said I should be seeing one now>
Why does your transplant center suggest seeing dermatologist after transplant?
JK

@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

Jump to this post

@chattykathy, I have had annual dermatology exams since my transplant and expect they will continue as long as I take immunosuppressants.

@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

Jump to this post

@contentandwell, I believe my transplant center wants annual dermatology checkups because the immunosuppressants weaken my physical system and open me up to an increased risk of skin cancer. I have also been advised to refrain from spending time in the sun or sunbathing and to cover well whenever I go outside.

@2011panc I have been told too to use high SPF lotions and wear a wide brimmed hat, and try to avoid the sun when it is high. I just discovered you can buy SPF 100 and 110 for face! I have always been careful of the sun because I was a fair-skinned red-head, but now of course I will need to be even more careful. They have not mentioned regular dermatology appointments though, at least not yet.
JK

@rosemarya

Are you a transplant patient or recipient? Have you had to deal with weight issues pre or post transplant?

Myself, I was wearing x-large sweat suits pre transplant due to ascites. And post transplant I could wear regular clothes in a small size. Now I have migrated back to my ‘normal’ medium size. For me it is a constant struggle to maintain that weight. I am a liver/kidney recipient, but I think that this issue relates to all of us. Sound familiar to anyone?
Please join and add your experiences.

@chattykathy, @contentandwell, @2011panc, have already shared some information on another forum. I extend the invitation to continue your conversation here on Transplant group.
Rosemary

Jump to this post

@contentandwell, You are right JK – We have to do our job so that our surgeon and entire team can do their job 🙂

@chattykathy

Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell out, could not eat very much at a time, had diet restrictions due to kidney and liver condition. I also developed acites which made me feel full all the time. This is not a way to lose weight. I have regained most of the weight back and am trying to lose it again. I just saw in my local newspaper that our local health department is starting yoga classes. I am thinking about joining if I can get transportation to them and back. I have balance issues, so I am hoping this might work for me. Our yard is unlevel with lots of roots which throws my balance off at times. I do not know of any pools close by that I could exercise in. Gyms will not accept me due to the blindness and liability. I will keep trying to control portions while eating healthy as much as possible.

Thanks to all for your words of encouragement. CK.

Jump to this post

Transplant recipients are at greater risk for developing skin cancer.
Prevention and early detection are important.

I am scheduled for dermatology check-up each year during my annual evaluation.
Rosemary

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