1. < Transplants
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.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 11, 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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I hope the yoga plan can be worked out for you.
CK, Thank you for sharing your journey with us. By listening to you describe the barriers that are put in front of you due to your blindness, I am learning much about this condition. You are responsible for teaching me about things that I never even considered before.
I am admire your attitude and your determination. You do not allow yourself to be identified by your blindness. Here, where I live, there is a large deaf community. I also admire my friends who are deaf. They do not consider their deafness a disabling condition, and it is not.
Rosemary

REPLY
JK | @contentandwell | Apr 11, 2017
In reply to @rosemarya "Sunscreen and sun protection!!! Yesterday the temperature reached a beautiful sunny 80 degrees here :-) Hubby..." + (show)
@rosemarya

Sunscreen and sun protection!!!
Yesterday the temperature reached a beautiful sunny 80 degrees here 🙂 Hubby and I went for a hike. It was through a forested area and after a climb, we were on a ridge top in total sun. So here is me: long hiking pants, and a long sleeve shirt (my preference to all-over-body sunscreen), and a broad brimmed hat and sunscreen on face, neck, hands. .
I once had a man tell me that I was not dressed for the weather while on a hike. grrrrh

How do you do the sun protection?

Sending you sunshine,
Rosemary

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@rosemarya Hi Rosemary. As I mentioned, I believe in a different thread, I too positively abhor the way sunscreen feels on my skin. As much as possible I just stay in the shade. We have been in the Caribbean a couple of times and both times I chose resorts where the accommodations were strung out along the beach, and there were palm trees. I only used sunscreen when I went in the water. I am fortunate because we have a very rustic cabin on a lake in Maine but we are on the west shore so from noon on the dock is in shade from all the tall pines. I never have to wear sunscreen up there.
JK

REPLY
1 reply
chattykathy | @chattykathy | Apr 12, 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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Thank you Rosemary. I try to be a positive person and not let my struggles get me down. I am really enjoying the posts from all of you. Thanks so much for the encouraging words.
CK

REPLY
2011panc | @2011panc | Apr 12, 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 hope you can work out rides to at least a few yoga classes. If not, I encourage you to see if the yoga instructor will come to your home and show you a few movements to get started. Once you have learned a few moves you should be able to do your movements at home at almost any time. Anything you can do in yoga should also help your balance issues. I understand about the back yard. I watch other people walking around, but when I try to go there I catch all kinds of lumps, humps and holes.

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 13, 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

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It sounds to me like most of us are concerned about weight issues. It is important to also be concerned about good nutrition, too.
I just came across this video and information about The Mayo Clinic and want to share it.

http://mayocl.in/2pdOyTh

Rosemary

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

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.

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

@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

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 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.

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
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.

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