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This and That and Talk - My Transplant

Posted by @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?

REPLY

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

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

@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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Hi @rosemarya. We have connected before. I need to lose weight to be in better health for my kidney transplant in a year or two. I was doing well for awhile (lost 20 lbs)but now I’m being a yo-yo. I really need to lose another 40 lbs but am struggling with my energy level (to exercise) because I’m in stage 4 and on very low protein. I also am dealing with plantar fasciitis which has meant no more walking the dog for quite awhile and that was my exercise before. I explored spending the money on Jenny Craig but they do not have low salt meals and I was ready to try Optifast with the local bariatric hospital program but you can only do that if in stage 1 or 2. Are there any programs at the Mayo Clinic or with the transplant team at Mayo? I’m open to any suggestions at this point. I know what to do, I just don’t seem to be able to follow through long term.

@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 am happy to visit with you again. Too bad about your plantar fasciitis – for you and for your dog. Are you getting anykind of treatment or management for it. It is painful. Fortunately my episodes have been minor and easily remedied with rest, change of walking shoes and inserts,

You are right to begin to prepare your body for future transplant.
I did Weight Watchers prior to transplant with a group of friends. But after my transplant I did not like it. I am a numbers person and the point counting was fun for me. To this day, I don’t know if it was the plan, or my failing liver that was responsible for my easy weight loss.

Mayo Clinic does have a diet plan 🙂 The Mayo Clinic Diet. It focuses building lifelong healthy eating practices as well as weight loss. There have been many fake diets in the past that have illegally used the Mayo name. But this is the real deal. I found it after my transplant thru an introductory book promotion from Mayo Marketing. I bought the book. I mainly use it for a balanced and healthy eating plan, now. And I really believe it is part of why I feel so good.

Here is some information for you.
https://register.diet.mayoclinic.org/d_partner_mcd_site_store_text?promo=3280215A-C0C9-4CD3-B38C-BD6ADE4B37C0

Here are some menu and recipe ideas for specific dietary needs.
http://www.mayoclinic.org/healthy-lifestyle/recipes

Keep in touch,
Rosemary

@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 Give yourself credit, you did it, not your liver. I did it because I wanted my BMI to be lower and it was hard work because I had a good appetite right through it all. I sort of lost my appetite for a few weeks after transplant but definitely not before.
I am a numbers person also, but not a person who would do well in a group like weight watchers.

@lcamino My sister had terrible problems with plantar fasciitis but she went to a really good shoe store and got what she needed and it got better and has never recurred. A doctor told her what she needed to get.
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

@lcamino Weight issues are so difficult. I have had them a lot, yo-yoed all my life, but am hoping that this time I will keep it down.

I find that I am much more sluggish on days when I do not exercise and I have no energy on those days. If I get to my club in the morning and do my water exercises it improves everything. I struggle to go, who wants to get up, get into a bathing suit and into a pool that is a bit cold? After I go though I feel so glad that I did. I reward myself afterwards with a little time in the sauna. I do not do hot tubs even though my club is pretty pristine, because I fear UTIs.

When I started I always went to class a bit late because an hour was daunting. Now I try to be there on time and after class I jog/march/breast-stroke walk the pool for 45 – 60 minutes. After I am tired but feel good that I did it. My son loves hearing that I am exercising so on particularly good days I send him a screen shot of what my fitness tracker shows. Yesterday was my “personal best”, 30,000 points which according to the fitness tracker was equivalent to over 5 miles!

So try doing something, start out with just a little and gradually work your way up to more. If you have a pool available that is the best because of the low-impact — I have two bad knees so that’s important to me.

I was doing this right up until transplant, less in that last month and a half because I was struggling with not feeling well at all and was so swollen with edema and ascites that nothing fit me so I pretty much was confined to the house.
JK

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!

@2011panc I have had a similar weight loss over the years with stop and start losses, pretty much maintaining between dieting. I have lost a total from the very beginning, which was probably about 10 years ago, of about 90 pounds. It amazes me now that no doctors really did anything to encourage me to lose weight. My current PCP gently said I should try cutting down on portions. I think he somehow realized I was not much of a junk eater. I would love to lose just a little bit more to get my BMI below 25. Right now it goes between 25 and 27. I want it lower than 25 ALWAYS.
Unfortunately I LOVE carbs, especially good breads.
At the club I go to there are many people who do as I do and walk laps. I do it pretty vigorously but some do it more leisurely. It is definitely easier for me than walking the same distance on pavement would be. I love to be social but not when I am in the pool — I want to do as much as I can and other people tend to slow me down.
Eating out is so difficult due to most restaurants using way too much salt. There are a few I favor because everything is to order so they can eliminate the salt. Of course they are also more expensive than typical restaurants but it’s worth it — we don’t eat out more than 2 – 3 times a month.
I try to limit myself to 1500 mgs a day. I was told 2000 but I find if I go over 1500 I do get fluid retention.

Oh, and I developed an intolerance to eggs for a short time, a few months, but now can eat one a couple of times a week. When I researched this I found out that it is generally the white that causes the intolerance! I was making eggs with two whites and one yolk! This started prior to transplant and I thought it was the dreaded lactulose that was causing my stomach upset. Then I noticed it was much worse on days when I had eggs.
JK

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.

@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!

Jump to this post

Thanks for the encouraging advice. I’ve been lazy lately and need to put your words to action.
I hope that you get to go on that shopping trip soon!
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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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

@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

Jump to this post

@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

@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

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

@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.

@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

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

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