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.

@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 - Glad to hear all is well since your knee replacement. I'm sorry to hear that you are in so much pain but I have heard that from other people as well. Not that that makes it any easier but at least I don't think it is terribly unusual. Months down the road the people I know who have had hip and knees replaced have been so thankful they had the surgery. For my father-in-law, once his rehab was done, it was the first time I saw him walk without limping. You have proven that you are resilient so I have confidence you will rehab well and be please in the long run. Hang in there!

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@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 - My husband and I can't get enough of Hawaii. The beauty, and variety of environment, is one thing but the laid back atmosphere and slower pace of life is what really brings us back. We were going to live there for 5 years or so at the beginning of my husband's retirement which was also supposed to be before my transplant. Now that I will be getting a transplant before he retires it really isn't in the plans anymore because the access to medical care makes us nervous post transplant.

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@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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@lcamino thanks. My PT was here today and he thinks I am progressing well. He felt that I no longer need to use the walker which was a relief. My husband has been very insistent that I use it despite my feelings so I was glad for him to hear it from a professional. He also measured my flex which was at 95. He said was good at this # of days. My bruising is horrendous though but my PT always has a great positive attitude which does help. He works me hard so I kid him that I won't look forward to his visits if he keeps that up.
JK

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@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

That sounds great, JK! Everyone that I know who has been to Hawaii has said the same thing. How unfortunate about the scanners, though.

That is so good that you enjoyed the time with your son and his southern belle - she sounds delightful!

Teresa

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@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

About visiting Hawaii! I am from a full season state (North Dakota) and was constantly amazed at the way things were constructed in Hawaii. We were on Oahu and drove the coastal highways often. I was constantly amazed at the slope of the driveways and how close the vegetation was allowed to grow next to the roads. I could actually reach out the window in places and pick a leaf off a tree! I kept thinking how glad I was visiting then and not in the winter! We were there in January/February! lol I commented often on how stupid it was to build such steep slopes because the would become impassable when the snow and ice hit. Oh yeah, it doesn't snow there! I also commented on the short-sightedness of letting the vegetation grow so close to the roads. Those roads would become completely blocked when it snowed! Oh yeah, it doesn't snow there! Over and over my blizzard mindset found fault with island practices, only to finally remember and apply that I WAS on an island! I'm sure the islanders would have been completely amused. I loved the visit, but I don't think I am cut out for island life full time. I would certainly go back for a visit though!

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@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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@2011panc of course being born and bred in New England I too am used to all four seasons and the same thoughts occurred to me. i could not imagine living there full time. No.ń

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@contentandwell, I am sure it is a huge relief for you to have your knee replacement surgery over - and successful. I saw where you mentioned that you are bruising a lot. I wonder if that could be related to your immunosuppressant meds? I remember, too, that your transplant surgeon and your orthopedic surgeon are 'on the same page' about this, but just a thought that came to my mind. Might be worth mentioning if it continues to be a concern.

As for myself, I have experienced a slower rate of recover-healing for minor cuts or bruises since I've had my transplant. I can't help but wonder if this is happening with your post transplant body? Be assured that healing does happen!

This slowed recovery also occurs with cold, sore throat etc.

JK it is wonderful to have you back in the conversations:-)
Rosemary

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@rosemarya

@contentandwell, I am sure it is a huge relief for you to have your knee replacement surgery over - and successful. I saw where you mentioned that you are bruising a lot. I wonder if that could be related to your immunosuppressant meds? I remember, too, that your transplant surgeon and your orthopedic surgeon are 'on the same page' about this, but just a thought that came to my mind. Might be worth mentioning if it continues to be a concern.

As for myself, I have experienced a slower rate of recover-healing for minor cuts or bruises since I've had my transplant. I can't help but wonder if this is happening with your post transplant body? Be assured that healing does happen!

This slowed recovery also occurs with cold, sore throat etc.

JK it is wonderful to have you back in the conversations:-)
Rosemary

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@contentandwell , @rosemarya - Well I never thought of it but slower healing is the case for my daughter that takes immunosuppressive meds for her arthritis. It would be interesting, and perhaps comforting, to ask your transplant team this JK. What my daughter takes is much less than you are on and it sometimes takes her two doses of antibiotics to get over a sinus infection and waaaay longer to recover from the basic cold. She often has to stop taking her meds to get better but that obviously is not an option for you.

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@rosemarya

@contentandwell, I am sure it is a huge relief for you to have your knee replacement surgery over - and successful. I saw where you mentioned that you are bruising a lot. I wonder if that could be related to your immunosuppressant meds? I remember, too, that your transplant surgeon and your orthopedic surgeon are 'on the same page' about this, but just a thought that came to my mind. Might be worth mentioning if it continues to be a concern.

As for myself, I have experienced a slower rate of recover-healing for minor cuts or bruises since I've had my transplant. I can't help but wonder if this is happening with your post transplant body? Be assured that healing does happen!

This slowed recovery also occurs with cold, sore throat etc.

JK it is wonderful to have you back in the conversations:-)
Rosemary

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@lcamino thanks Lynne, the next time I have contact with the transplant team I will ask about it. I am sure there is nothing that can be done for that so I won’t bother making a special call for that. It makes sense though so the drugs probably do cause a delay.
JK

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Well it's been awhile since we have all "talked" but I thought I would share some exciting news. Some of you know I participated in a research study for PKD at Mayo in Rochester. I finished the first study 8 months ago and the results were just published in the New England Journal of Medicine. The head researcher (and my doctor), Dr. Torres, is hopeful that the med they were testing will get approved by the FDA in the new year. THIS WILL BE THE FIRST TREATMENT FOR PKD!!! I will still need a transplant in the next year or two (although my kidney function is not decreasing slower now that I'm in the second study and on the med. In the first study I got the placebo.), but it gives a lot of hope to my daughter who may now never need a transplant! PKD is the 4th leading cause of kidney failure so this progress is HUGE for the 600,000 people in the U.S. who have PKD. I feel like 100 lbs has been lifted off my shoulders and I still get teary when I talk about this break through. Thanks to Dr. Torres and all other doctors and participants for the study does not adequately express my happiness. This disease took the life of four family members and I have cousins that have it. Thanks for "listening".

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