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Online Support Meetings for Transplants?

Posted by rshangle @rshangle, Mar 16, 2023

Hi - I'm Rick. First-time poster. glad to be here.

Is anyone aware of online, Zoom-like support meetings for transplant patients?

Thanks! Regards, Rick

Interested in more discussions like this? Go to the Transplants Support Group.

Mentor
Lori, Volunteer Mentor | @loribmt | Mar 16, 2023

Hi @rshangle, There are a number of online support meetings for transplant patients. But each are specific to the type of transplant. If you could let me know what organ, or if it’s a stem cell transplant, I can help you find a meeting and a group of members who share your experience.
What was your gift of life?

REPLY
1 reply
ken0228 | @mayo2go | Mar 18, 2023

I am also interested in knowing any zoom-based support groups in Mayo Clinic Connect. In my particular case, I am a pre-kidney transplant candidate; has been approved for transplant and been waiting to be put on the deceased waiting list, which could be any moment now. I selected Mayo Clinic in Arizona, and I am currently living in Northern California, working.

Kidney Status: Stage 4 (eGFR 17 ~ 18), due to Polycystic Kidney
Dialysis Status: Not yet starting, but kidney doc is pushing me to have surgery for PD; I resisted it because in general I feel OK. I hope to get the transplant before I have to do PD. Praying...
Blood Pressure: with medication under control
Transplant Center Selected: Mayo Clinic Arizona
Transplant Status: Approved, not yet on UNOS waiting list.
Transplant Evaluation Results: everything is good, except kidney function.
Health Status: Drink plenty of water, every day and produces about 2 to 2. 5 liters of urine. Eat a lot of fruits (600 g) daily, and leafy greens.
Hike 2 to 3 times a week, 3.5 miles with 400 ft elevation gain, in 1:25 Hours.

Wish everyone the best,

Ken

REPLY
1 reply
l0lag0lag0b3 | @l0lag0lag0b3 | Mar 19, 2023
In reply to @mayo2go "I am also interested in knowing any zoom-based support groups in Mayo Clinic Connect. In my..." + (show)
@mayo2go

I am also interested in knowing any zoom-based support groups in Mayo Clinic Connect. In my particular case, I am a pre-kidney transplant candidate; has been approved for transplant and been waiting to be put on the deceased waiting list, which could be any moment now. I selected Mayo Clinic in Arizona, and I am currently living in Northern California, working.

Kidney Status: Stage 4 (eGFR 17 ~ 18), due to Polycystic Kidney
Dialysis Status: Not yet starting, but kidney doc is pushing me to have surgery for PD; I resisted it because in general I feel OK. I hope to get the transplant before I have to do PD. Praying...
Blood Pressure: with medication under control
Transplant Center Selected: Mayo Clinic Arizona
Transplant Status: Approved, not yet on UNOS waiting list.
Transplant Evaluation Results: everything is good, except kidney function.
Health Status: Drink plenty of water, every day and produces about 2 to 2. 5 liters of urine. Eat a lot of fruits (600 g) daily, and leafy greens.
Hike 2 to 3 times a week, 3.5 miles with 400 ft elevation gain, in 1:25 Hours.

Wish everyone the best,

Ken

Jump to this post

Ken, I was pretty much in a similar situation, around gfr 13/14 we went hiking to quite a few places - the arches national park + New Zealand + great barrier reef... I still feel that it is possible to get some mileage from your kidney at those gfr numbers as long as diet comprises of soluble protein, (like vege/fruit/lentil) genetics plays 70% role approx 30% is diet related. Non soluble protein in diet will damage the kidney nephron filters eventually or rapidly depending the state they are in.
I sense you on the right path. ( I am no authority... ) & wish you the very best. ( btw: my wife was the donor ... which I think was a miracle.. which I still cannot get over (its nearing 4 years). You should also consider multi listing once in UNOS database. You may like to visit srtr.org that gives you an insight into the kidney xplant outcomes nationally.
Best

REPLY
1 reply
ken0228 | @mayo2go | Mar 19, 2023
In reply to @l0lag0lag0b3 "Ken, I was pretty much in a similar situation, around gfr 13/14 we went hiking to..." + (show)
@l0lag0lag0b3

Ken, I was pretty much in a similar situation, around gfr 13/14 we went hiking to quite a few places - the arches national park + New Zealand + great barrier reef... I still feel that it is possible to get some mileage from your kidney at those gfr numbers as long as diet comprises of soluble protein, (like vege/fruit/lentil) genetics plays 70% role approx 30% is diet related. Non soluble protein in diet will damage the kidney nephron filters eventually or rapidly depending the state they are in.
I sense you on the right path. ( I am no authority... ) & wish you the very best. ( btw: my wife was the donor ... which I think was a miracle.. which I still cannot get over (its nearing 4 years). You should also consider multi listing once in UNOS database. You may like to visit srtr.org that gives you an insight into the kidney xplant outcomes nationally.
Best

Jump to this post

@l0lag0lag0b3: grateful to your reply--information and encouragement. Your hiking experience brings back my memories of Zion, Byrce NP trip. During that trip, we also tried, but failed, to get the lottery ticket to go to The Wave.

Thank you!

Ken

REPLY
1 reply
l0lag0lag0b3 | @l0lag0lag0b3 | Mar 19, 2023
In reply to @mayo2go "@l0lag0lag0b3: grateful to your reply--information and encouragement. Your hiking experience brings back my memories of Zion,..." + (show)
@mayo2go

@l0lag0lag0b3: grateful to your reply--information and encouragement. Your hiking experience brings back my memories of Zion, Byrce NP trip. During that trip, we also tried, but failed, to get the lottery ticket to go to The Wave.

Thank you!

Ken

Jump to this post

Wave is tough to get, we tried 3 times on fri/Sat/Sun online.... never got lucky. My wife said this is gambling in her view ... so drop it... she lost the value for visiting wave ....... In a way I had to agree !

REPLY
rshangle | @rshangle | Mar 20, 2023
In reply to @loribmt "Hi @rshangle, There are a number of online support meetings for transplant patients. But each are..." + (show)
@loribmt

Hi @rshangle, There are a number of online support meetings for transplant patients. But each are specific to the type of transplant. If you could let me know what organ, or if it’s a stem cell transplant, I can help you find a meeting and a group of members who share your experience.
What was your gift of life?

Jump to this post

Thanks @loribmt !

Pre-transplant candidate, liver. rds

REPLY
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