1. < Transplants
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.

jackie421blfdgurl | @jackie421blfdgurl | May 5, 2022
In reply to @estrada53 "Great to see your wise comments here, Athena. We've missed you!" + (show)
@estrada53

Great to see your wise comments here, Athena.
We've missed you!

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Yes went to hosp.er for the monoclodal antibodies shit...now we wait...and wait ..and wait..love n kisses to ALL

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parrot53 | @parrot53 | May 6, 2022
In reply to @kathycaudle "Hi Bette...I can relate to your story. I was diagnosed with NASH in 2014. Over the..." + (show)
@kathycaudle

Hi Bette...I can relate to your story. I was diagnosed with NASH in 2014. Over the next 4 years had the EGD procedure nearly 25 times because of varices, always banded never bled...yea! In 2016 diagnosed with liver cancer. In 2018 the now 3 tumors were large enough to treat, a transplant was the only option. I was transplanted at Mayo Jacksonville Nov 2019 at 70. Everything has been miraculous throughout this journey, not all enjoyable, but definitely a miracle. I'll be 73 in July and still deal with age related life issues, but my liver is doing great, I'm still with my family and I'm alive! I am eternally grateful to my Mayo family, my own family and my donor family❤ Never give up, its not an easy road but it is worth traveling it. Blessed wishes to you.

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Kathy,
So glad all is well for you. I was comforted by your story. My journey is beginning like yours. Diagnosed with cirrhosis in 2019, treated for Hep c and cleared in 2020. Now have a slow growing liver tumor and will have it ablated this month. I am hoping for the best but realistic about more cancer and possible transplant in the future. Thank you for sharing your story.

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2 replies
kathycaudle | @kathycaudle | May 6, 2022
In reply to @parrot53 "Kathy, So glad all is well for you. I was comforted by your story. My journey..." + (show)
@parrot53

Kathy,
So glad all is well for you. I was comforted by your story. My journey is beginning like yours. Diagnosed with cirrhosis in 2019, treated for Hep c and cleared in 2020. Now have a slow growing liver tumor and will have it ablated this month. I am hoping for the best but realistic about more cancer and possible transplant in the future. Thank you for sharing your story.

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Blessed wishes to you on your journey...it'll be an interesting one💚

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | May 6, 2022
In reply to @jackie421blfdgurl "Hi hi hi..so happy to hear from you!!! Yes I got the dreaded case everyone wanted..." + (show)
@jackie421blfdgurl

Hi hi hi..so happy to hear from you!!! Yes I got the dreaded case everyone wanted to avoid!!! Today feel a little better but not 100%. I spent last two days cleaning house and disenfecting it.sleep at night not so good.on ward march !!!have a good day hope all is well with you...

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@jackie421blfdgurl, I hope that you continue to make progress and feel better today than yesterday.
I have a quick question for you when you are feeling up to responding. Some members have mentioned sleep difficulties and hot flashes since their own organ transplants surgery. Was your sleep recently disrupted due to the Covid or treatment? Or has your sleep been disrupted since your transplant?

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1 reply
jackie421blfdgurl | @jackie421blfdgurl | May 7, 2022
In reply to @rosemarya "@jackie421blfdgurl, I hope that you continue to make progress and feel better today than yesterday. I..." + (show)
@rosemarya

@jackie421blfdgurl, I hope that you continue to make progress and feel better today than yesterday.
I have a quick question for you when you are feeling up to responding. Some members have mentioned sleep difficulties and hot flashes since their own organ transplants surgery. Was your sleep recently disrupted due to the Covid or treatment? Or has your sleep been disrupted since your transplant?

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It took a long time to restore my sleep. But it has been good..have days where most nights toss n turn but some times sleep thru the night.but covid had not distruped any thing I believe. I am still congested and runny nose so that has put a bummer on my sleep. But I do feel better today, will go get tested Monday morning cause I want to go back to work.but I have come to the decision I will need to leave my job due to my environment is too dangerous for my health. This bout of covid has opened my eyes...hope all is well with ya all!!! Thinking of you with your upcoming tests...you'll do fine....❤️❤️❤️🌷🌷🌷🥰🌻

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jackie421blfdgurl | @jackie421blfdgurl | May 7, 2022
In reply to @parrot53 "Kathy, So glad all is well for you. I was comforted by your story. My journey..." + (show)
@parrot53

Kathy,
So glad all is well for you. I was comforted by your story. My journey is beginning like yours. Diagnosed with cirrhosis in 2019, treated for Hep c and cleared in 2020. Now have a slow growing liver tumor and will have it ablated this month. I am hoping for the best but realistic about more cancer and possible transplant in the future. Thank you for sharing your story.

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Parrot53.
I walked around with cirrochis for quite some time..years ..blood test were not normal when it came to all liver tests
Dr. Kept saying. Oh well we will repeat in a few months..I did .same results..same response.
Symptoms got worse:itchy rashes: purple marks like bruises.dr. said that's from old age!! Swollen belly ..swollen feet.dr.said wear compression stockings! My gastro dr.put it all together after looking at my blood tests and sent me MRI. It came back cirrhosis and a tumor in liver.Now at Mt.Sinai Jan 4 2020.test.test.then Feb. My first ablation
Called Y90. It worked but then another...2nd micro blast but by now on transplant list.call came that October.i still want to ........that doctor.

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2 replies
parrot53 | @parrot53 | May 7, 2022
In reply to @jackie421blfdgurl "Parrot53. I walked around with cirrochis for quite some time..years ..blood test were not normal when..." + (show)
@jackie421blfdgurl

Parrot53.
I walked around with cirrochis for quite some time..years ..blood test were not normal when it came to all liver tests
Dr. Kept saying. Oh well we will repeat in a few months..I did .same results..same response.
Symptoms got worse:itchy rashes: purple marks like bruises.dr. said that's from old age!! Swollen belly ..swollen feet.dr.said wear compression stockings! My gastro dr.put it all together after looking at my blood tests and sent me MRI. It came back cirrhosis and a tumor in liver.Now at Mt.Sinai Jan 4 2020.test.test.then Feb. My first ablation
Called Y90. It worked but then another...2nd micro blast but by now on transplant list.call came that October.i still want to ........that doctor.

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Oh man, sometimes I think male docs don’t get us women at all. They don’t realize we are not making things up. So sorry you had such a bad experience. I found my Hep c in 1996 when donating blood for my grandson. Went to a gastro who was good and got me into clinical trials for hep c. No cure at that Ike. When I finally could afford treatment it was 2019. Too late to reverse the damage done to my liver. Just had to wait for the cure and am now dealing with the long term effects of Hep c and cirrhosis/ HCC. Mayo in Jacksonville is wonderful and I am getting great care. They have been monitoring this tumor for two years now it is finally UNOS qualified for transplant. Still hoping I won’t need one, but prepared to take my doc’s advice.
So glad you finally got to the right doc. What a difference it makes. I wish you the very best and hope your journey is finally headed in the right direction. Mt. Sinai is a good place to be.

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1 reply
jackie421blfdgurl | @jackie421blfdgurl | May 7, 2022
In reply to @parrot53 "Oh man, sometimes I think male docs don’t get us women at all. They don’t realize..." + (show)
@parrot53

Oh man, sometimes I think male docs don’t get us women at all. They don’t realize we are not making things up. So sorry you had such a bad experience. I found my Hep c in 1996 when donating blood for my grandson. Went to a gastro who was good and got me into clinical trials for hep c. No cure at that Ike. When I finally could afford treatment it was 2019. Too late to reverse the damage done to my liver. Just had to wait for the cure and am now dealing with the long term effects of Hep c and cirrhosis/ HCC. Mayo in Jacksonville is wonderful and I am getting great care. They have been monitoring this tumor for two years now it is finally UNOS qualified for transplant. Still hoping I won’t need one, but prepared to take my doc’s advice.
So glad you finally got to the right doc. What a difference it makes. I wish you the very best and hope your journey is finally headed in the right direction. Mt. Sinai is a good place to be.

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Hi. Thanks for your reply always good to hear from the gang. My
Transplant was such a blessing and a shock.but if u have the transplant ask a ton of questions: research the meds: and take it day by day..God bless and keep us posted

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jackie421blfdgurl | @jackie421blfdgurl | May 8, 2022

Jackie@jackiez....
Thanks for reply always good to get my feedback to know I am not writing something out of the Galaxy
Haha....have a great day.jackie

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Bette J Wilson | @bjintn | May 11, 2022
In reply to @jackie421blfdgurl "Parrot53. I walked around with cirrochis for quite some time..years ..blood test were not normal when..." + (show)
@jackie421blfdgurl

Parrot53.
I walked around with cirrochis for quite some time..years ..blood test were not normal when it came to all liver tests
Dr. Kept saying. Oh well we will repeat in a few months..I did .same results..same response.
Symptoms got worse:itchy rashes: purple marks like bruises.dr. said that's from old age!! Swollen belly ..swollen feet.dr.said wear compression stockings! My gastro dr.put it all together after looking at my blood tests and sent me MRI. It came back cirrhosis and a tumor in liver.Now at Mt.Sinai Jan 4 2020.test.test.then Feb. My first ablation
Called Y90. It worked but then another...2nd micro blast but by now on transplant list.call came that October.i still want to ........that doctor.

Jump to this post

I'm finding more similarities with more people...how are any of you dealing with eating issues? I'm hungry but eating my food is unpleasant as with no salt, its basically tasteless. My husband works so hard to rectify this but I'm just going through the motion of eating and not enjoying any of it. I've become so picky that I've told him that I'll be satisfied with just our smoothie as they are rich in good foods and I can taste them. I do have issue with a metal taste in my mouth and suck on cough drops to endure it. And what is ablation? Thanks y'all.

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