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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 group.

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.

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@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
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
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
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
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 20, 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, You are right JK – We have to do our job so that our surgeon and entire team can do their job 🙂

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 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

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

REPLY
JK | @contentandwell | Apr 20, 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 I just recently discovered when I asked about an error on my record of whom was listed as my surgeon that he was the primary surgeon but two other transplant surgeons were in there too! No wonder it costs so much. I had met one of the other surgeons during the initial intro day and she visited me two times but I had no idea she was in there also.
JK

REPLY
JK | @contentandwell | 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

@rosemarya I guess this is something I will be hearing about then. Another doctor visit, just what I want. Next week I have to see a pulmonary doctor to hear the results of an ECHO I had on Monday. When last done I was bordering on pulmonary hypertension. I also have to see my medical oncologist following the MRI I had yesterday; they are following that because of the malignant lesions I had. Malignant lesions sounds so much less frightening than cancer.
JK

REPLY
2011panc | @2011panc | Apr 21, 2017

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

REPLY
109 replies
JK | @contentandwell | Apr 21, 2017
In reply to @2011panc "@Contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew..." + (show)
@2011panc

@contentandwell, You are right about sunscreen. I have never had a problem with sunburn and grew up on a farm. I have also been advised to use a good sunscreen (SPF 15 or higher was recommended at the time, so you know how long ago that was!), but have never gotten into the habit. I use positioning more than sunscreen to protect myself. Since I have allergies I do not miss being outside much.

Jump to this post

@2011panc Since I hate bugs I don’t enjoy the outdoors much, I love sitting out or napping on our screened in porch though. To me that’s heaven. I did it a lot last summer.
JK

REPLY
Eileen Ryan "Patient" | @eileenheart | Apr 21, 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

Because we are likely to get skin cancer because of all the meds we take .?!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 30, 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 and @lcamino I agree with the water shoes! I have Parkinson’s and I’m not always “sure-footed”. However, the water shoes are great and give me confidence and safety when I walk in a pool. During the summer I leave them in the car and they dry out quite quickly from the sun heating up the car (my car is always parked outside). Therefore they stay dry and don’t get musty. However, if your car is protected from the sun, letting the shoes dry on a porch or deck where the sun hits them will work nicely as well. Teresa

REPLY
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