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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.

emil | @emil | Apr 25, 2022
In reply to @rosemarya "@emil, I am overdue for a response. I hope that you have been enjoying some activity..." + (show)
@rosemarya

@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?

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I, too, send tardy reply.

But as with many of my fellow humans, my story is convoluted, moving forward, backward, laterally. As recent movies would have it, everything everywhere all at once.

I “retired” after struggling with ESLD for about 18 months. Just couldn’t keep going. I was eligible, but had planned to die with my boots on, so to speak.

Anyhow, now I just stay as useful as possible.

More another time. Today is another windy day in NM.

Keep it out of the ditches meanwhile.

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1 reply
jackiez | @jackiez | Apr 25, 2022
In reply to @estrada53 "Oh, happy day! The cake looks amazing! So important to celebrate our milestones. Where are you..." + (show)
@estrada53

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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Thanks @estrada53 I am near Moline, IL (Quad City area). It’s about 180 miles west of Chicago. Not too far away. Today we are back to gray, chilly weather. A good day for inside projects!

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 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!

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@jackiez, Happy Happy Anniversary! Your husband is awesome for thinking of and googling information about this cake! I am happy that you, your husband, family, and special friends were able to celebrate together. This is definitely a miraculous milestone.
Jackie, if I were to ask you to share a favorite memory of your first year, what would you share?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 25, 2022
In reply to @jackiez "Thanks @estrada53 I am near Moline, IL (Quad City area). It’s about 180 miles west of..." + (show)
@jackiez

Thanks @estrada53 I am near Moline, IL (Quad City area). It’s about 180 miles west of Chicago. Not too far away. Today we are back to gray, chilly weather. A good day for inside projects!

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We drive past the Moline exit on our way to Mayo Rochester each year! I'll honk this year.

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jackiez | @jackiez | Apr 25, 2022

Thanks @rosemarya
Just one?? No can do…
Coming home from Rochester, riding my horse for the first time, celebrating Christmas with my family, NYE and Birthday in Montana with family and yesterday’s party. All things I hoped for when I was in transplant rehab. Life is good!!

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1 reply
Bette J Wilson | @bjintn | Apr 25, 2022
In reply to @emil "I, too, send tardy reply. But as with many of my fellow humans, my story is..." + (show)
@emil

I, too, send tardy reply.

But as with many of my fellow humans, my story is convoluted, moving forward, backward, laterally. As recent movies would have it, everything everywhere all at once.

I “retired” after struggling with ESLD for about 18 months. Just couldn’t keep going. I was eligible, but had planned to die with my boots on, so to speak.

Anyhow, now I just stay as useful as possible.

More another time. Today is another windy day in NM.

Keep it out of the ditches meanwhile.

Jump to this post

What is ESLD? I have NASH which is non alcoholic cirrhosis of the liver. After vomiting blood in Nov 2021, I've been told I'm rated between b and c; c being the last stage. Really? No transplant in sight as my body is slowly running down...is this similar to your diagnosis, emil? I've been needing some feedback... I'm open to any word about "me"; don't know who I am.🤔 Bette

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Mentor
Lori, Volunteer Mentor | @loribmt | 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!

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Congratulations!! That’s a big milestone and that cake is amazing!! ☺️

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emil | @emil | Apr 25, 2022
In reply to @jackiez "Thanks @rosemarya Just one?? No can do… Coming home from Rochester, riding my horse for the..." + (show)
@jackiez

Thanks @rosemarya
Just one?? No can do…
Coming home from Rochester, riding my horse for the first time, celebrating Christmas with my family, NYE and Birthday in Montana with family and yesterday’s party. All things I hoped for when I was in transplant rehab. Life is good!!

Jump to this post

Hi, Bette. I apologize for being opaque. ESLD is just End Stage Liver Disease, usually considered stage IV cirrhosis, not reversible.

You certainly have my sympathy; I only wish my sympathy was of more practical use to y

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1 reply
emil | @emil | Apr 25, 2022
In reply to @emil "Hi, Bette. I apologize for being opaque. ESLD is just End Stage Liver Disease, usually considered..." + (show)
@emil

Hi, Bette. I apologize for being opaque. ESLD is just End Stage Liver Disease, usually considered stage IV cirrhosis, not reversible.

You certainly have my sympathy; I only wish my sympathy was of more practical use to y

Jump to this post

you. Excuse the break. At least know you are not alone.

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1 reply
Bette J Wilson | @bjintn | Apr 26, 2022
In reply to @emil "you. Excuse the break. At least know you are not alone." + (show)
@emil

you. Excuse the break. At least know you are not alone.

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Can you share with me how you are feeling? What physical issues are you having to deal with. I don't know if I'm imagining things or not. Is it really a 1 to 3 year endurance test - to see if you can last that long? I really think we can comfort one another. I'm 71 and my body is into most older age problems. No one has offered me even the option of a transplant. My GI doctor banded 18 varices in my esophagus in 4 different surgeries. Said I wouldn't need to see him for a year. Everyone thought I was cured...but my daily living isn't what it use to be. Are we on the same page?

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