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Mentor

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?

Interested in more discussions like this? Go to the Transplants Support Group.

JK | @contentandwell | Apr 20, 2017

@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

REPLY
1 reply
2011panc | @2011panc | Apr 20, 2017
In reply to @chattykathy "Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell..." + (show)
@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.

REPLY
2011panc | @2011panc | Apr 20, 2017
In reply to @chattykathy "Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell..." + (show)
@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.

REPLY
JK | @contentandwell | Apr 19, 2017
In reply to @chattykathy "Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell..." + (show)
@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

REPLY
JK | @contentandwell | Apr 19, 2017
In reply to @rosemarya "Are you a transplant patient or recipient? Have you had to deal with weight issues pre..." + (show)
@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

REPLY
chattykathy | @chattykathy | Apr 19, 2017
In reply to @chattykathy "Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell..." + (show)
@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

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

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 19, 2017
In reply to @rosemarya "Are you a transplant patient or recipient? Have you had to deal with weight issues pre..." + (show)
@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

@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

REPLY
JK | @contentandwell | Apr 18, 2017
In reply to @rosemarya "Are you a transplant patient or recipient? Have you had to deal with weight issues pre..." + (show)
@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

@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

REPLY
IWantToBelieve | @IWantToBelieve | Apr 18, 2017
In reply to @chattykathy "Hi all; prior to transplant, I was malnourished due to GI symptoms also. My hair fell..." + (show)
@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
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.

REPLY
IWantToBelieve | @IWantToBelieve | Apr 18, 2017
In reply to @rosemarya "Are you a transplant patient or recipient? Have you had to deal with weight issues pre..." + (show)
@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 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.

REPLY
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