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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 | Sep 11, 2017
In reply to @hopeful33250 "@amynewheart I was just thinking about you. As it has been over a month since you..." + (show)
@hopeful33250

@amynewheart

I was just thinking about you. As it has been over a month since you have posted, I was wondering how you are doing.

Teresa

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@davebarnes - I am away on vacation. But as soon as I saw you're post, I just couldn't wait till I get home to say that I am so very happy for you and your wife to have received your liver transplant.
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 20, 2017
In reply to @hopeful33250 "@amynewheart I was just thinking about you. As it has been over a month since you..." + (show)
@hopeful33250

@amynewheart

I was just thinking about you. As it has been over a month since you have posted, I was wondering how you are doing.

Teresa

Jump to this post

@davebarnes, I hope that you are making some forward progress, Dave. Please know that I, as well as the other members, are thinking of you. We are cheering from many places. We know that sometimes the healing happens in spurts. All of our journeys are different.
Sending gentle hugs,
Rosemary

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 23, 2017

@contentandwell - HAPPY TRANSPLANT ANNIVERSARY !!! 🙂
Rosemary

I invite you to share a few words on the "Celebrate Transplant Blessings", or "Happy Transplantiversary"
https://connect.mayoclinic.org/discussion/happy-transplantiversary/
https://connect.mayoclinic.org/discussion/celebrate-your-transplant-blessings/

I pray that your health and blessings continue for years to come.
Rosemary

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1 reply
JK | @contentandwell | Sep 23, 2017
In reply to @rosemarya "@contentandwell - HAPPY TRANSPLANT ANNIVERSARY !!! :-) Rosemary I invite you to share a few words..." + (show)
@rosemarya

@contentandwell - HAPPY TRANSPLANT ANNIVERSARY !!! 🙂
Rosemary

I invite you to share a few words on the "Celebrate Transplant Blessings", or "Happy Transplantiversary"
https://connect.mayoclinic.org/discussion/happy-transplantiversary/
https://connect.mayoclinic.org/discussion/celebrate-your-transplant-blessings/

I pray that your health and blessings continue for years to come.
Rosemary

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@rosemarya Thank you Rosemary. I was at the Hindu pre-wedding ceremony today for my daughter and after the ceremony we had lunch with about 30 people and my future son-in-law toasted me on the occasion and everyone applauded. I am not good at being the center of attention but it was a nice gesture.
I too hope that I continue to have good health for years to come. It's been an amazing year. I feel great, and I enjoy life more than ever, being very aware of how fortunate I am at being here still.
JK

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IWantToBelieve | @IWantToBelieve | Sep 25, 2017

@contentandwell - I did think of you on Saturday (date was in my calendar) but I failed to send you a congratulations. Your post above is so encouraging - you feel good and are enjoying life. I'm so pleased for you and thankful that you are here on earth to enjoy your daughter's wedding. Congratulations on being healthy and remaining that way for many years to come!

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JK | @contentandwell | Sep 25, 2017

@lcamino Thanks. As I have probably mentioned before, my motto has become "I'm going to live forever, so far, so good". (Steven Wright)
JK

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davidgenebarnes | @davidgenebarnes | Oct 16, 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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Well, it's been six weeks since my liver transplant. While I am dealing with a few issues, overall it was a success. Recovery is another story.
I am staying on campus at Mayo's recovery center with my Wife/Caregiver.
My complications include:
My bilirubin levels continue to be too high, causing a potential stint surgery. Since I have had a gastric bypass they have to go through my side instead of my nose.
I have been getting really sick from a 7.5mm kidney stone they just found. I had a stint put in via my penis (ouch!). I now urinate every 15 minutes with blood and puss. It is scheduled to come out in a week with a scheduled laser to break up the single stone.
While my pain level has been getting better, it I still ranges between a 5 and 8.
When I came to Phoenix a year ago, I weighed 345. My ideal weigh is around 285/290. I'm a big 6.4" guy. Currently I am at 225, losing 30 pounds in a month. I look like a skeleton. If they would have kept my staples in I would have many costume ideas for Holloween.
I need to get better soon so I can get back to work, as I have been with no income for six weeks now.
On a positive note, when I have a pain med in me, I can easily see that the surgery was successful based on my flexibility, energy and lack of negative thoughts.
I was only on the transplant list for two weeks. Once they called me, the new liver was in me 4 hours later, total surgery time was six hours.
Mayo Phoenix is absolutely the best!. This coupled with my Caregiver/Wife, I feel very well taken care of.
Just thought I would put my thoughts out there.

Best Wishes and Prayers to all pending transplant patients.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 16, 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, Welcome back to Connect! I am very happy to hear from you.

You have quite an amazing story! This proves that all of our stories are unique. Thank you for sharing.
You have really been through a lot. And you are in the perfect place to have the specialists to get you through your complications. My husband and I prefer to refer to them as bumps in the road. My wish for you and your wife, is that your bumps soon level out!

David, please keep us updated on your progress, so we can celebrate with you.

Prayers for continued healing,
Rosemary

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.

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.

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