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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.

parrot53 | @parrot53 | Mar 24, 2022
In reply to @emil "I too am a SLK transplant recipient (simultaneous liver and kidney, at Mayo Clinic, June 2014),..." + (show)
@emil

I too am a SLK transplant recipient (simultaneous liver and kidney, at Mayo Clinic, June 2014), and until recently had big issues with appetite, esculatory pleasure, and weight maintenance. Post transplant I had all of the possible complications: rejection, infections, astonishing pain, etc. and found most foods abhorrent, even ones I had previously enjoyed.
It got to the point that I was facing another NG tube.

But I hung in there, kept a calorie diary aiming for 2000 kcal/day, not always making it but always trying. I drank high calorie shakes and a kidney supplement.
Nowadays I maintain a good weight and even sometimes have to trim back my snacking. I think time, occasional cannabis (legal in my state) and proper pain control all helped. I’m also blessed with very supportive caregivers who ply me with nutritious goodies. I became a vegetarian post transplant as I found the taste and consistency of meat, even chicken, abhorrent. This has had the positive side effect of lower cholesterol values. As an additional plus, I quit consuming alcohol and tobacco pre transplant and never resumed.

Anyhow, my trip post transplant is still fraught, and I stick close to my local doc as well as the Mayo transplant team. Right now I’m dealing with spine and other bone issues, as well as a mystery lesion in my lung, already scarred from surgery to treat a fungal infection.

But as I’ve learned to say, my worst day post transplant still beats my best day with ESLD and kidney failure.

That’s all I can offer right now.

Best regards to all of you on your transplant journey.

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So much bravery. It is great to know that despite your difficulties you are getting on with your life and you are still here to enjoy things like the night sky, good music, and each new day. I applaud your courage and thank you for sharing. It makes this world a better place.

REPLY
emil | @emil | Mar 26, 2022
In reply to @rosemarya "@emil, I want to welcome you to Mayo Connect. I see that you have recently joined..." + (show)
@rosemarya

@emil, I want to welcome you to Mayo Connect. I see that you have recently joined in Dec. I am happy that you have posted in the transplant discussion, and especially happy to meet you, and learn that you, too, are a SLK transplant recipient! I haven't met many others. Have you?
I like what you said about your worst day post transplant still beats your best day with ESLD and kidney failure. I have, and still, say the same thing.
I needed a liver for PSC (Primary Sclerosing Cholangitis) and then developed acute kidney failure. I was on the waiting list for a liver in Kentucky, but had to be inactivated from the transplant list because attempts to get a biopsy and diagnosis for bile duct cancer were unsuccessful. I was scheduled for an appointment at Mayo to get a diagnosis and then return home. But my kidneys failed and ended up in ICU in critical condition with emergency dialysis. After 5 days I was flown from ICU to Mayo Rochester. I spent the entire spring of 2009 in Rochester at Gift of Life House with intervals in the Mayo Methodist Hospital. I was on dialysis until transplant on April 22. three weeks later I was able to return home. I (with my husband) do return to Mayo annually for follow-up evaluation. My local PCP takes good care of me during the rest of the year.

Here are some discussions that I want to suggest to you:
Liver transplant - Let's support each other
https://connect.mayoclinic.org/discussion/liver-support-group/

Snapshots of hope: Life on the other side of transplant.https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/

I hope that you will get some answers about your lung lesions. Are you being monitored for that? Do you return to Mayo for an annual evaluation?

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Rosemary:

Our stories are remarkably similar, though my liver/kidney disease was caused by ETOH and family history.

I too was transplanted after being admitted in my last legs and bouncing back and forth twixt status one and seven. I lucked out at literally the last hour.
I’ve only met—virtually—two other SLK transplants. I think fewer than 8K of us exist or existed.
I’m an ambassador for Donate Life. I do visit Mayo annually.
Thanks for your volunteer work! Gottenyu.

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 30, 2022
In reply to @emil "Rosemary: Our stories are remarkably similar, though my liver/kidney disease was caused by ETOH and family..." + (show)
@emil

Rosemary:

Our stories are remarkably similar, though my liver/kidney disease was caused by ETOH and family history.

I too was transplanted after being admitted in my last legs and bouncing back and forth twixt status one and seven. I lucked out at literally the last hour.
I’ve only met—virtually—two other SLK transplants. I think fewer than 8K of us exist or existed.
I’m an ambassador for Donate Life. I do visit Mayo annually.
Thanks for your volunteer work! Gottenyu.

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@emil, I had my transplant at Mayo Rochester. Which Mayo Campus did go for your transplant?
I used to volunteer as an ambassador with Donate Life, but when the local office and activities moved out of my area, I found it too difficult to remain active. That is when I decided to focus my volunteering on Connect in the transplant discussion.

April is Donate Life Month.
https://connect.mayoclinic.org/discussion/transplant-events/?commentsorder=newest#chv4-comment-stream-header
What are some events that will be happening near you?

REPLY
2 replies
stephanierp | @stephanierp | Mar 30, 2022
In reply to @rosemarya "@emil, I had my transplant at Mayo Rochester. Which Mayo Campus did go for your transplant?..." + (show)
@rosemarya

@emil, I had my transplant at Mayo Rochester. Which Mayo Campus did go for your transplant?
I used to volunteer as an ambassador with Donate Life, but when the local office and activities moved out of my area, I found it too difficult to remain active. That is when I decided to focus my volunteering on Connect in the transplant discussion.

April is Donate Life Month.
https://connect.mayoclinic.org/discussion/transplant-events/?commentsorder=newest#chv4-comment-stream-header
What are some events that will be happening near you?

Jump to this post

Rosemary, I am so happy you decided to focus on mentoring on Connect! Your topics and comments are calming and spot on, and you have helped me significantly on my journey after transplant. I was unaware of April as Donate Life Month. I will have to think of a way to serve.

REPLY
emil | @emil | Mar 31, 2022
In reply to @rosemarya "@emil, I had my transplant at Mayo Rochester. Which Mayo Campus did go for your transplant?..." + (show)
@rosemarya

@emil, I had my transplant at Mayo Rochester. Which Mayo Campus did go for your transplant?
I used to volunteer as an ambassador with Donate Life, but when the local office and activities moved out of my area, I found it too difficult to remain active. That is when I decided to focus my volunteering on Connect in the transplant discussion.

April is Donate Life Month.
https://connect.mayoclinic.org/discussion/transplant-events/?commentsorder=newest#chv4-comment-stream-header
What are some events that will be happening near you?

Jump to this post

I’m a product of Mayo AZ and an anonymous donor, brought together at exactly the right time to save my life.

I volunteer to give back, of course. Donate Life has a hard time here Due to distances between the communities and the COVID-19 restrictions, which are still in place of course for immunosuppressed patients.

I have attached a picture of us at one of our recent events, As well as a picture of me and two of my own wonder dogs.
REPLY
2 replies
emil | @emil | Mar 31, 2022
In reply to @emil "I’m a product of Mayo AZ and an anonymous donor, brought together at exactly the right..." + (show)
@emil

I’m a product of Mayo AZ and an anonymous donor, brought together at exactly the right time to save my life.

I volunteer to give back, of course. Donate Life has a hard time here Due to distances between the communities and the COVID-19 restrictions, which are still in place of course for immunosuppressed patients.

I have attached a picture of us at one of our recent events, As well as a picture of me and two of my own wonder dogs.

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And please excuse the random capitalization, a product of damnyouautocorrect. As a retired English professor I’m compelled to fix these.

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 18, 2022
In reply to @emil "I’m a product of Mayo AZ and an anonymous donor, brought together at exactly the right..." + (show)
@emil

I’m a product of Mayo AZ and an anonymous donor, brought together at exactly the right time to save my life.

I volunteer to give back, of course. Donate Life has a hard time here Due to distances between the communities and the COVID-19 restrictions, which are still in place of course for immunosuppressed patients.

I have attached a picture of us at one of our recent events, As well as a picture of me and two of my own wonder dogs.

Jump to this post

@emil, I am overdue for a response. I hope that you have been enjoying some activity with your 2 buddies! Are they walkers- Do you and they go for walks?
I used to do the registry tables like you have shared, too. I loved doing that! I miss doing that! And I met some very interesting people, and even heard some amazing personal stories from donor families who stopped to tell about their loved ones.
Thanks for the pictures!
I used to work in elementary and then taught in middle school special education . I retired early, before my transplant. I was nearing retirement anyway. What are you doing with your days now as a retired English professor? How long have you been retired?

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 20, 2022
In reply to @emil "And please excuse the random capitalization, a product of damnyouautocorrect. As a retired English professor I’m..." + (show)
@emil

And please excuse the random capitalization, a product of damnyouautocorrect. As a retired English professor I’m compelled to fix these.

Jump to this post

@emil - Guess what! I just got invited to participate in a nearby Donate Life Month Organ Donor Registry / Information table at a nearby medical center location! I’m not sure of the visitor restriction and I really really wanted to say “Yes”. But since I already have plans, I did decline.

REPLY
jackiez | @jackiez | Apr 25, 2022

Hi Everyone! I celebrated my first year transplantaversary yesterday (April 24th-heart/double lung) with a Thank You party for family and friends that helped me and my family with the transplant journey, especially when I was hospitalized. It was a decent spring day in the Midwest so we could be outside too. My husband surprised me with this cake he commissioned from a local bakery. Everyone was amazed at the detail and taste was great too. Apparently you can google anything these days and take the pic to a bakery!
REPLY
3 replies
estrada53 | @estrada53 | Apr 25, 2022
In reply to @jackiez "Hi Everyone! I celebrated my first year transplantaversary yesterday (April 24th-heart/double lung) with a Thank You..." + (show)
@jackiez

Hi Everyone! I celebrated my first year transplantaversary yesterday (April 24th-heart/double lung) with a Thank You party for family and friends that helped me and my family with the transplant journey, especially when I was hospitalized. It was a decent spring day in the Midwest so we could be outside too. My husband surprised me with this cake he commissioned from a local bakery. Everyone was amazed at the detail and taste was great too. Apparently you can google anything these days and take the pic to a bakery!

Jump to this post

Oh, happy day! The cake looks amazing! So important to celebrate our milestones. Where are you in the Midwest?
I'm in the Chicago are right now! The weekend was great!
Carry on, brave warrior!

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