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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.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 22, 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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@contentandwell - Jane, It is good to hear from you. You constantly amaze me with your determination to give your all! Please, take care to not over do it.
Rosemary

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 22, 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

Hi JK,

It is good to hear from you. I'm glad that you TKR is over now. I have heard that the pain can be awful - but soon you will be on the other side. Take it easy as you exercise and keep in touch with your doctor.

By the way, how was your trip to Hawaii?

Teresa

REPLY
JK | @contentandwell | Oct 21, 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 good article. I was fortunate in that I didn't gain too many extra pounds after transplant but it was a battle.

Last week while in the hospital for two days with my TKR I gained 10 pounds! I realize there is a lot of fluid retention in that number but that does not account for all of it so I am trying to fight this battle again.

I am trying to do the recommended exercises but one of them has me hurting so badly that I need to drop it for a couple of days. So far I am struggling with this recuperation more than I did with my transplant recuperation. I really hurt and the meds have me exhausted.
JK

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 17, 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

@davidgenebarnes You are sounding better with every post. Keep the good news coming!
Rosemary

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 17, 2017
In reply to @2011panc "@rosemarya I have to chuckle at my first thought in response to your question. I find..." + (show)
@2011panc

@rosemarya I have to chuckle at my first thought in response to your question. I find roofs and walls are great sun protection! Actually I have a great deal of trouble with heat changes, so I don't spend much time outdoors -- either in the summer or the winter. I do wear or carry a hat and long-sleeved jacket, as well as wearing capris, slacks or knee-length skirts. I grew up on a farm, so the outdoors don't draw me much and I still have not picked up the sunscreen habit. Sad, but true.

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@2011panc, I'm glad I could make you chuckle:-)
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 17, 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

While we are on the topic of post transplant weight gain -
Have any of you seen Kristin's newest Transplant Blog post?
Take a look, see what you think!
https://connect.mayoclinic.org/newsfeed-post/weight-gain-after-transplant-where-does-it-come-from-and-how-to-get-rid-of-it-2/
Rosemary

REPLY
davidgenebarnes | @davidgenebarnes | Oct 17, 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

Hi Lynn,
I was told it would take 6 months to a year to find a liver. And yes, Livers are much quicker than kidneys I've learned. I live only 20 minutes from Mayo, so it was in pretty quick.
After last night and today in the Hospital, I am happy to report that I am out. At least until tomorrow's kidney stone surgery.
Wish you and yours the best.
Dave
'

REPLY
2011panc | @2011panc | Oct 17, 2017

@rosemarya I have to chuckle at my first thought in response to your question. I find roofs and walls are great sun protection! Actually I have a great deal of trouble with heat changes, so I don't spend much time outdoors -- either in the summer or the winter. I do wear or carry a hat and long-sleeved jacket, as well as wearing capris, slacks or knee-length skirts. I grew up on a farm, so the outdoors don't draw me much and I still have not picked up the sunscreen habit. Sad, but true.

REPLY
1 reply
2011panc | @2011panc | Oct 17, 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

@davidgenebarnes Congratulations on your speedy transplant. Regarding your weight, I also initially lost about 30 pounds very quickly. Once we sorted out some additional diagnoses and my body got used to the medications a bit I was able to eat better and eventually gained it back (and more, even though I did not want to). I started religiously applying my limitations diets and over and have been able to lose slowly and consistently. Last November I challenged my husband to lose 20 pounds because that was the amount he wanted to lose. We both lost and then summer hit. I gloriously devoured peaches, watermelon and sandwiches until I realized I had gained about 8 pounds back over the summer. I have now re-applied myself and hope to continue my weight loss for a total of 20 more pounds. After my husband's 20 pound loss he went back to his previous food consumption habits and has also gained back, although I am not sure how much. I am pleased with my current weight, as I have not been this weight since the 80's after a debilitating illness. I hate to admit it, but I have been one of those yo-yo people. I sincerely hope to put a stop to that. I wish you well on your healing journey and am glad for all the supports you have. Bless You.

REPLY
IWantToBelieve | @IWantToBelieve | Oct 17, 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

@davidgenebarnes - So good to hear from you! I'm sorry to hear about your many complications but it sounds like there is a plan to get you home. I'm sure you must be frustrated but you still have a sense of humor (your Halloween comment) which is a good sign. When/if you get down just try to remember those times when you have a pain med in you and are able to notice your improved health. I'm confident the Mayo doctors can bring your good health out of hiding so you can return to work a new man.

It's amazing to hear that you were only on the list for 2 weeks. That is a short time if you are waiting for a kidney but maybe not for a liver? It is incredible that your new liver was in you 4 hours after you got the call. How far did you have to drive?

Please give my best to your caregiver/wife who is playing such a critical role in your recovery now. Accepting help from a caregiver is humbling but being a caregiver is tiring and should not go unnoticed. I'm glad you feel well taken care of despite your temporary setbacks. Thanks for taking the time to update us all. We are caring from a distance and appreciate you sharing.

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