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Non Directed Living Donors

Posted by tinamarbury @tinamarbury, Jul 22 1:04pm

I am testing to be non-directed living donor through Mayo. I was wondering if anyone else has done that and if they were approved, what is the average time between approval and surgery? Thank you!

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sarah232 | @sarah232 | Jul 23 7:20am

Hi,
I replied to you in the other thread as well. I’m a non-directed donor too and I signed up in January and my surgery is scheduled for July 29th. The initial bloodwork was done in a week. Scheduling the full day of testing where you see the whole team happened in April and then the team met to discuss my eligibility. They had a couple of follow-up inquiries so that took a few weeks and then I was approved. I was ready to do the surgery right away but it takes time to do the coordination piece so another 3 weeks and then my “21 day window” starts and then it takes time to find the best match. Even still, there are last minutes health concerns on the recipient side that mean it’s an “all prayers appreciated” process to get to “the surgery is a go” on July 29th.
Hope this helps,
Sarah

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judithw | @judithw | Jul 23 10:49am

I was a non directed donor at Mayo in 2022. I did my full 3 days of testing in May; was approved, on the register, and had a match in July. I chose the 3 week scheduling window of surgery for October to accommodate my work schedule. Donation completed early October. I think a lot of the process/timing is donor driven...meaning how quickly you complete the steps are a you decision.

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tinamarbury | @tinamarbury | Jul 23 2:51pm

That is very helpful! I want to do it ASAP!

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sarah232 | @sarah232 | Jul 24 7:47am
In reply to @judithw "I was a non directed donor at Mayo in 2022. I did my full 3 days..." + (show)
Profile picture for judithw @judithw

I was a non directed donor at Mayo in 2022. I did my full 3 days of testing in May; was approved, on the register, and had a match in July. I chose the 3 week scheduling window of surgery for October to accommodate my work schedule. Donation completed early October. I think a lot of the process/timing is donor driven...meaning how quickly you complete the steps are a you decision.

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@judithw any post-op tips? I’ve heard yes on abdominal binders and not necessary from others? How much water are you drinking daily on average? Anything else that helped speed your recovery?
Thanks!

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judithw | @judithw | Jul 24 10:25am

@sarah232 Yes on the ab binder...it's helpful in the first week and while travelling. I drink about 100 Oz daily (I've always been a water drinker). I stayed in Rochester for about a week after. I didnt want to be back home if I experienced any complications (I didnt have any).

Use any funds available from all sources. There was a federal grant that the social workers told me about (thru NLDAC) and I didnt think I'd need it...but there are a lot of expenses (flights, lodging, meals, etc) that aren't recouped.
https://www.kidney.org/kidney-topics/living-donor-finances-and-insurance (link to nldac on this page)
I didnt apply at the start, so my donation trip wasn't covered, but I applied after and was able to use the funds for my follow up visits. Apply before. If you don't use any of the funds, they stay for your follow-up visits.
Be sure to complete your kidney voucher info (if available). I have family with kidney issues, so it might help you or them later.
I had my sister with me and it was very necessary. She handled meds, cooking, etc. I was able after a day or two, but it was nice to have her handling things.
Some states have life giving leave. Mine (WA) does, so I didn’t have to use my PTO.
If you're working, complete your FMLA doc for job protection. Also some states have paid family medical leave (if no life giving leave). Check that out too!
Last year I had some medical genetics testing done...had I done that first, I may have reconsidered my decision to donate. Despite the new information, I am glad I donated and it was a good experience for me.
Hope this is helpful. I gave Mayo Rochester authorization to have future donors contact me, so if you want any more info you're welcome to get my contact info from them or ask questions here.
Judy Wells

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2 replies
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sarah232 | @sarah232 | 6 days ago
In reply to @judithw "@sarah232 Yes on the ab binder...it's helpful in the first week and while travelling. I drink..." + (show)
Profile picture for judithw @judithw

@sarah232 Yes on the ab binder...it's helpful in the first week and while travelling. I drink about 100 Oz daily (I've always been a water drinker). I stayed in Rochester for about a week after. I didnt want to be back home if I experienced any complications (I didnt have any).

Use any funds available from all sources. There was a federal grant that the social workers told me about (thru NLDAC) and I didnt think I'd need it...but there are a lot of expenses (flights, lodging, meals, etc) that aren't recouped.
https://www.kidney.org/kidney-topics/living-donor-finances-and-insurance (link to nldac on this page)
I didnt apply at the start, so my donation trip wasn't covered, but I applied after and was able to use the funds for my follow up visits. Apply before. If you don't use any of the funds, they stay for your follow-up visits.
Be sure to complete your kidney voucher info (if available). I have family with kidney issues, so it might help you or them later.
I had my sister with me and it was very necessary. She handled meds, cooking, etc. I was able after a day or two, but it was nice to have her handling things.
Some states have life giving leave. Mine (WA) does, so I didn’t have to use my PTO.
If you're working, complete your FMLA doc for job protection. Also some states have paid family medical leave (if no life giving leave). Check that out too!
Last year I had some medical genetics testing done...had I done that first, I may have reconsidered my decision to donate. Despite the new information, I am glad I donated and it was a good experience for me.
Hope this is helpful. I gave Mayo Rochester authorization to have future donors contact me, so if you want any more info you're welcome to get my contact info from them or ask questions here.
Judy Wells

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@judithw that’s great information - thank you so much.

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Profile picture for tinamarbury
tinamarbury | @tinamarbury | 5 days ago
In reply to @judithw "@sarah232 Yes on the ab binder...it's helpful in the first week and while travelling. I drink..." + (show)
Profile picture for judithw @judithw

@sarah232 Yes on the ab binder...it's helpful in the first week and while travelling. I drink about 100 Oz daily (I've always been a water drinker). I stayed in Rochester for about a week after. I didnt want to be back home if I experienced any complications (I didnt have any).

Use any funds available from all sources. There was a federal grant that the social workers told me about (thru NLDAC) and I didnt think I'd need it...but there are a lot of expenses (flights, lodging, meals, etc) that aren't recouped.
https://www.kidney.org/kidney-topics/living-donor-finances-and-insurance (link to nldac on this page)
I didnt apply at the start, so my donation trip wasn't covered, but I applied after and was able to use the funds for my follow up visits. Apply before. If you don't use any of the funds, they stay for your follow-up visits.
Be sure to complete your kidney voucher info (if available). I have family with kidney issues, so it might help you or them later.
I had my sister with me and it was very necessary. She handled meds, cooking, etc. I was able after a day or two, but it was nice to have her handling things.
Some states have life giving leave. Mine (WA) does, so I didn’t have to use my PTO.
If you're working, complete your FMLA doc for job protection. Also some states have paid family medical leave (if no life giving leave). Check that out too!
Last year I had some medical genetics testing done...had I done that first, I may have reconsidered my decision to donate. Despite the new information, I am glad I donated and it was a good experience for me.
Hope this is helpful. I gave Mayo Rochester authorization to have future donors contact me, so if you want any more info you're welcome to get my contact info from them or ask questions here.
Judy Wells

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@judithw What is an ab binder and where can I get one? thanks!

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2 replies
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judithw | @judithw | 5 days ago
In reply to @tinamarbury "@judithw What is an ab binder and where can I get one? thanks!" + (show)
Profile picture for tinamarbury @tinamarbury

@judithw What is an ab binder and where can I get one? thanks!

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@tinamarbury
Abdominal binder (a wide elastic with velcro that is wrapped around your torso). it's for after surgery to support an abdominal incision. The hospital staff will ask if you want one. I found it helpful.

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1 reply
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tinamarbury | @tinamarbury | 5 days ago

Cool thanks! I think that would be very helpful. 🙂

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sarah232 | @sarah232 | 4 days ago
In reply to @tinamarbury "@judithw What is an ab binder and where can I get one? thanks!" + (show)
Profile picture for tinamarbury @tinamarbury

@judithw What is an ab binder and where can I get one? thanks!

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@tinamarbury I bought one on Amazon - they are size specific so you’ll need to pick one that fits around you as well as the height you need. Some hospitals provide them - mine doesn’t so I bought my own just to be safe.

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