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?

@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, I miss hearing your voice in these conversations. I do hope that you are doing well. Do you have any update about your nutrition and exercise possibilities?
I have been inspired to do some serious looking into my portion control, too. I’ll share a ‘trick’ that is working for me! I have been filling half of my plate with salad before I set it on the table – the result is that I have less empty plate to fill with the goodies that I prepare for my husband.
Rosemary

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@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.

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@rosemarya I have become such a huge advocate of both exercise and losing weight. I was very heavy at one point, have gradually lost weight over the years, losing a really good amount in the last year and a half. I am quite certain that my health problems were a product of my excess weight. When I see so many young people carrying so much excess weight I want to shake them.
The exercise is so important too. They now know how much it adds to your life span, and even helps your brain. My husband feels I am addicted but I don’t think so because I have to convince myself to go every day. If I don’t go first thing after breakfast as the day wears on I lose my enthusiasm even more so for me it is best to get there for the 9:00 water aerobics class and then do my own thing for more. It has helped my knees tremendously, and my posture too!
JK

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@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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@rosemarya :::::::::::::::::big sigh:::::::::::::::: I miss salads so much. I can’t believe that I am told to not have them now due to my digestive problems from the immunosuppresants. I suspect I should not be eating fruits either and I love strawberries in the morning, either in my hot cereal or just sliced on my plate next to whatever I am eating.
JK

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@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.

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@contentandwell You have developed a great attitude and a plan! Thanks for sharing this with our Mayo Community. Teresa

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@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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@contentandwell, I also have not eaten green leafies for a long time. I have no problems with strawberries, bananas, cantaloupe or oranges. I do, however, have a problem with watermelon unless I take an anti-diarrheal at the same time. I love watermelon, so I satiate and take the pill. Usually one watermelon satisfies me for a long time.

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@2011panc

This is in response to diet and weight loss through the transplant process. Prior to transplant (pancreas) I lost a great deal of weight due to gastric issues. Ironically while still having giant yoyo blood sugars! At the time I was malnourished and losing hair also. Following transplant I was unable to wear any of my previous clothes because of distension and tenderness in my stomach. Immediately following the transplant I continued losing weight for a while and then gained a little back. Over the last year I have been working on losing again in hopes of getting a better bmi and into the normal range of weight/height/age. I am now down 3 dress sizes and on the brink of needing to shop for the next smaller size. I hope to lose another 20 pounds for a total loss of 90 pounds from my highest ever weight. I am on 5 limiting diets and eat when I am hungry rather than on a schedule. I drink a great deal of water, black coffee, herbal tea and chicken broth. I tend to run low on sodium, so the chicken broth helps with that. Thank God for small favors! lol I limit dairy, fiber, oxalates, fats and carbohydrates. The carb cuts are mostly from dropping potatoes and things made with flour. I also rarely eat eggs or drink soda, as they seem to upset my stomach. I do not have gluten intolerance, I just feel better without the flour products. We mostly cook from fresh at home, so that cuts out a great deal of preservatives also and help me feel better. Exercise is difficult because of trembling and balance issues, but I do my best to keep up with yoga, stretching and walking. I’m thinking of attempting swimming laps, but just have not made that commitment yet. I encourage everyone to do your best and be mindful of what your hands are doing and what you put in your mouth. If you eat something you shouldn’t have . . . we all have. Just start over. We can do this!

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@rosemarya I am on my way home from Rochester after an extended stay for additional testing for diarrheal issues. It was not what I thought it was, so I am disappointed that there will be no easy fix. However, I have a plan of action in place and will go from here. On a happy note, my husband did take me shopping to the Albertville Outlet Center. It was a lovely spring day and I visited almost every store. I picked up a few nice things for myself and enjoyed the day very much.

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@2011panc

This is in response to diet and weight loss through the transplant process. Prior to transplant (pancreas) I lost a great deal of weight due to gastric issues. Ironically while still having giant yoyo blood sugars! At the time I was malnourished and losing hair also. Following transplant I was unable to wear any of my previous clothes because of distension and tenderness in my stomach. Immediately following the transplant I continued losing weight for a while and then gained a little back. Over the last year I have been working on losing again in hopes of getting a better bmi and into the normal range of weight/height/age. I am now down 3 dress sizes and on the brink of needing to shop for the next smaller size. I hope to lose another 20 pounds for a total loss of 90 pounds from my highest ever weight. I am on 5 limiting diets and eat when I am hungry rather than on a schedule. I drink a great deal of water, black coffee, herbal tea and chicken broth. I tend to run low on sodium, so the chicken broth helps with that. Thank God for small favors! lol I limit dairy, fiber, oxalates, fats and carbohydrates. The carb cuts are mostly from dropping potatoes and things made with flour. I also rarely eat eggs or drink soda, as they seem to upset my stomach. I do not have gluten intolerance, I just feel better without the flour products. We mostly cook from fresh at home, so that cuts out a great deal of preservatives also and help me feel better. Exercise is difficult because of trembling and balance issues, but I do my best to keep up with yoga, stretching and walking. I’m thinking of attempting swimming laps, but just have not made that commitment yet. I encourage everyone to do your best and be mindful of what your hands are doing and what you put in your mouth. If you eat something you shouldn’t have . . . we all have. Just start over. We can do this!

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I am just catching up on my mail. While travelling I had trouble connecting and getting through all my mail. Overall I am well. During this trip I began having increased arthritic pain in my spine. It has been a problem for a very long time, it’s just that the increase in pain is significant. Even though I am not a water baby, I will have to get in the pool now. I really need to be able to move with less pain and expect the water buoyancy will help. I had a complete gastric workup at Mayo, which was grueling because of the fasting and tests performed. Thankfully everything was done in 5 days. I am really starting to dislike having to fast for tests. lol

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@contentandwell

@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

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@2011panc Thanks 2011panc. I spoke to an NP at the hospital and she gave me some more vague guidelines and then I looked up foods to bind and foods that are roughage. I now have two very good lists, one from the Mayo site, and I think the other is form Livestrong.
When I coincidentally saw my PCP last week he suggested trying metamucil which surprisingly can help diarrhea. I say surprisingly because I thought it was a laxative but I checked the site and apparently it can help to firm things up too. At the transplant center they said that was OK but recommended Immodium after they get the results of my last tests.
What more are they going to take away from me? Honestly I am not complaining, they gave me a new liver so it’s more than a fair exchange.
I really miss salads (more even than a glass of wine with dinner). It’s so odd, the things that are normally best for you I can’t eat! They even recommend white bread!
JK

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@2011panc

This is in response to diet and weight loss through the transplant process. Prior to transplant (pancreas) I lost a great deal of weight due to gastric issues. Ironically while still having giant yoyo blood sugars! At the time I was malnourished and losing hair also. Following transplant I was unable to wear any of my previous clothes because of distension and tenderness in my stomach. Immediately following the transplant I continued losing weight for a while and then gained a little back. Over the last year I have been working on losing again in hopes of getting a better bmi and into the normal range of weight/height/age. I am now down 3 dress sizes and on the brink of needing to shop for the next smaller size. I hope to lose another 20 pounds for a total loss of 90 pounds from my highest ever weight. I am on 5 limiting diets and eat when I am hungry rather than on a schedule. I drink a great deal of water, black coffee, herbal tea and chicken broth. I tend to run low on sodium, so the chicken broth helps with that. Thank God for small favors! lol I limit dairy, fiber, oxalates, fats and carbohydrates. The carb cuts are mostly from dropping potatoes and things made with flour. I also rarely eat eggs or drink soda, as they seem to upset my stomach. I do not have gluten intolerance, I just feel better without the flour products. We mostly cook from fresh at home, so that cuts out a great deal of preservatives also and help me feel better. Exercise is difficult because of trembling and balance issues, but I do my best to keep up with yoga, stretching and walking. I’m thinking of attempting swimming laps, but just have not made that commitment yet. I encourage everyone to do your best and be mindful of what your hands are doing and what you put in your mouth. If you eat something you shouldn’t have . . . we all have. Just start over. We can do this!

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@2011panc I’m happy for you that is over now. I know how difficult it is to go for constant tests.
As you may recollect, I use a pool a lot for exercise. It’s a Godsend. I have to drag myself there but afterwards I have more energy and I feel good about going. I am a sociable person but don’t slow me down when I am jogging laps in the pool! I want to get them done and get out.
JK

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@2011panc

This is in response to diet and weight loss through the transplant process. Prior to transplant (pancreas) I lost a great deal of weight due to gastric issues. Ironically while still having giant yoyo blood sugars! At the time I was malnourished and losing hair also. Following transplant I was unable to wear any of my previous clothes because of distension and tenderness in my stomach. Immediately following the transplant I continued losing weight for a while and then gained a little back. Over the last year I have been working on losing again in hopes of getting a better bmi and into the normal range of weight/height/age. I am now down 3 dress sizes and on the brink of needing to shop for the next smaller size. I hope to lose another 20 pounds for a total loss of 90 pounds from my highest ever weight. I am on 5 limiting diets and eat when I am hungry rather than on a schedule. I drink a great deal of water, black coffee, herbal tea and chicken broth. I tend to run low on sodium, so the chicken broth helps with that. Thank God for small favors! lol I limit dairy, fiber, oxalates, fats and carbohydrates. The carb cuts are mostly from dropping potatoes and things made with flour. I also rarely eat eggs or drink soda, as they seem to upset my stomach. I do not have gluten intolerance, I just feel better without the flour products. We mostly cook from fresh at home, so that cuts out a great deal of preservatives also and help me feel better. Exercise is difficult because of trembling and balance issues, but I do my best to keep up with yoga, stretching and walking. I’m thinking of attempting swimming laps, but just have not made that commitment yet. I encourage everyone to do your best and be mindful of what your hands are doing and what you put in your mouth. If you eat something you shouldn’t have . . . we all have. Just start over. We can do this!

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@2011panc Shopping is therapeutic, isn’t it? Teresa

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@2011panc

This is in response to diet and weight loss through the transplant process. Prior to transplant (pancreas) I lost a great deal of weight due to gastric issues. Ironically while still having giant yoyo blood sugars! At the time I was malnourished and losing hair also. Following transplant I was unable to wear any of my previous clothes because of distension and tenderness in my stomach. Immediately following the transplant I continued losing weight for a while and then gained a little back. Over the last year I have been working on losing again in hopes of getting a better bmi and into the normal range of weight/height/age. I am now down 3 dress sizes and on the brink of needing to shop for the next smaller size. I hope to lose another 20 pounds for a total loss of 90 pounds from my highest ever weight. I am on 5 limiting diets and eat when I am hungry rather than on a schedule. I drink a great deal of water, black coffee, herbal tea and chicken broth. I tend to run low on sodium, so the chicken broth helps with that. Thank God for small favors! lol I limit dairy, fiber, oxalates, fats and carbohydrates. The carb cuts are mostly from dropping potatoes and things made with flour. I also rarely eat eggs or drink soda, as they seem to upset my stomach. I do not have gluten intolerance, I just feel better without the flour products. We mostly cook from fresh at home, so that cuts out a great deal of preservatives also and help me feel better. Exercise is difficult because of trembling and balance issues, but I do my best to keep up with yoga, stretching and walking. I’m thinking of attempting swimming laps, but just have not made that commitment yet. I encourage everyone to do your best and be mindful of what your hands are doing and what you put in your mouth. If you eat something you shouldn’t have . . . we all have. Just start over. We can do this!

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@2011panc, I hope that you will sleep good in your own bed tonight! I am going to be on the sidelines, and cheering for you as you proceed with your plan of action.
A lovely spring day with shopping (and finding some nice things) sound like a nice way to treat yourself after your rugged week.

Do you stay at the Gift of Life House when you go to Mayo in Rochester?
Rosemary

REPLY
@2011panc

This is in response to diet and weight loss through the transplant process. Prior to transplant (pancreas) I lost a great deal of weight due to gastric issues. Ironically while still having giant yoyo blood sugars! At the time I was malnourished and losing hair also. Following transplant I was unable to wear any of my previous clothes because of distension and tenderness in my stomach. Immediately following the transplant I continued losing weight for a while and then gained a little back. Over the last year I have been working on losing again in hopes of getting a better bmi and into the normal range of weight/height/age. I am now down 3 dress sizes and on the brink of needing to shop for the next smaller size. I hope to lose another 20 pounds for a total loss of 90 pounds from my highest ever weight. I am on 5 limiting diets and eat when I am hungry rather than on a schedule. I drink a great deal of water, black coffee, herbal tea and chicken broth. I tend to run low on sodium, so the chicken broth helps with that. Thank God for small favors! lol I limit dairy, fiber, oxalates, fats and carbohydrates. The carb cuts are mostly from dropping potatoes and things made with flour. I also rarely eat eggs or drink soda, as they seem to upset my stomach. I do not have gluten intolerance, I just feel better without the flour products. We mostly cook from fresh at home, so that cuts out a great deal of preservatives also and help me feel better. Exercise is difficult because of trembling and balance issues, but I do my best to keep up with yoga, stretching and walking. I’m thinking of attempting swimming laps, but just have not made that commitment yet. I encourage everyone to do your best and be mindful of what your hands are doing and what you put in your mouth. If you eat something you shouldn’t have . . . we all have. Just start over. We can do this!

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@2011panc Fasting and tests are not fun at all. The stress of the testing is bad enough. I remember joking with my nurses during my 2 week hospital stint prior to transplant about the ‘mayo diet’ that they had me on because of so many fasting procedures.
It is amazing how Mayo can get so much accomplished in a short span of time. People here at home, cannot imaging such a thing.

Please keep in touch.
Rosemary

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@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, No salads? Is this a forever thing, or is it temporary? Are there any veggies or fruits that are OK? Or are canned in natural juices OK?
Rosemary

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@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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@2011panc, @contentandwell
I am sending this link to Mayo Healthy Lifestyle Page. You might be able to find some nutrition information or recipes that might fit your needs. There are a lot of interesting topics, so I included the full page. Plus some special diets on the Fitness and Nutrition section.
http://www.mayoclinic.org/healthy-lifestyle
Rosemary

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@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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@rosemarya I hope it will not be forever, I love salads and they are so healthy. I’ve found some dressings that don’t say “lite” but they really are lower in calories and some are very low in sodium, and they taste great. It’s Braswells. I love their vidalia peppercorn. The only ingredient in it that is not something a person would not use at home is xanthan gum and I don’t think that’s bad for you.
I can eat cooked veggies because then the fiber is softened and less abrasive. Same with fruits. I love oatmeal in the morning with strawberries but the only hot cereal I see on the list is cream of wheat and I think my beloved strawberries and blueberries are off limits except in very small quantities. They said to not eat things that are more than 1 gm of fiber per serving. White bread is fine.
How crazy is this? It eliminates all the healthy eating foods.
Juices are fine but I rarely drink them because lots of cals and not much better for you than sodas really, plus I love grapefruit juice which is off limits due to the immunosuppressants of course.
JK

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