Donating a kidney, flying to Mayo for surgery, any packing tips?

Posted by savvysarahjane @savvysarahjane, Nov 25, 2021

Hi!

After 90 weeks of COVID related waiting following my clear to donate, my (donation on behalf of) recipient and I are scheduled for surgery in just a few weeks. I'm looking for tips from folks on things they had wished they had packed, or were very grateful to have thought of to have with them. After so much waiting, it feels like we're now going at warp speed and my brain is mush. I'm a Mom of three, so I've at least got packing lots of clean underwear covered. 😛

Thanks in advance!

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@kristinkay

What is the all important pillow? I'm getting ready to donate next week.

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@kristinkay, I was a kidney and liver recipient. I used it to prevent pain and to ease my fear of popping my abdominal clamps after surgery when coughing. It helps to hug it to the affected area,
Please know that I’m thinking of you as you prepare for and under go surgery next week.
Do you know the recipient?

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@tasher3433

Hi KristinKay! The important pillow is the one that gives the most comfort, be it a scent, a feel, whatever gives YOU comfort, But MAYO will gift you a green kidney shaped pillow that you can place anywhere you don’t want pressure! We travelled to Mayo Scottsdale, from Las Vegas by car and we just moved into an Airbnb for the duration, so extra pillows were easy enough. Also, drinking water by the case! Phoenix water is gross. And you will be drinking gallons😊 Mayo will also give you a large, lidded plastic mug.
I’m going both ways here, as my husband was the recipient and our daughter, K, was the donor. K’s bloating seemed like a week. She was walking same day, albeit slowly, but faithfully! ( her own caregiver moved right in with us..it was an ideal situation.) they walked every 2 hours, she was released next day, and had to stay a week for testing after, to be sure all was well. The pillows were packed around her like a newborn, in the car, and they stopped nearly every hour when she needed to change positions, or pee! She did find stairs were out of the question the 1st week she was home, and a reclining chair was a godsend…with pillows of course! She is a walker, and in good physical condition so walking fit into the routine.

My husband, at 75, had organ rejection, 3 days after transplant. However Mayo put him back in, blasted the rejection to hell for 4 days, and he progressed as well. We were actually in Scottsdale for nearly 8 weeks before heading home…with the pillows, the 4 hour drive took 7 hours with our stops.
Walking will be your lifesaver, both of you! Not fun, at first, but restorative. Go as far as is comfortable as often as you can, sleep in between. We progressed from a walker to a cane, to nothing within 2 weeks for my husband.

Yes, a nutritionist met with us! Very helpful, though G had been on the kidney disease diet for over a year, so not much different. Take notes! For myself, everything was a whirl, especially as Covid was showing its ugly face and I found I could refer to notes, again, after a conversation.
Oh my goodness, let me just ramble here😊.

Oh, we also found the 7 day pill container to be so helpful, as well as timers on our phones/ watches.

Remember, the only stupid question is the one you DON’T ask. The Mayo team is fantastic, but the people here are amazing! My very best wishes to you all, with hopes of a speedy recovery.

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Wow, thank you. This was very helpful information. We have a 10 hr drive back to Arkansas after discharge from Rochester. We'll stay in the area for about a week after getting out of the hospital for check ups. I heard I get a mug but didn't know if this was a 'congrats on donating a kidney' thing or what. .. sounds like I'll need to drink water like a camel.
I'm now going to bring all my bed pillows in the car for the drive home. We have many stops planned. I walk about 2 miles per day which sounds like will help me in restoration. I don't take many pills so not sure about the pill boxes. I wish I knew if I'm supposed to watch a special renal diet after donating. I'm thinking my lone remaining kidney might need tender care in dietary but don't know if I'm meeting w a nutritional expert. None scheduled so far.

You have been very helpful and reassuring, thank you. I hope and pray all goes well for your family as you progress forward. 🙏

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@rosemarya

@tasher3433 - Please keep on rambling!!! Your first hand account of your experience is better than any textbook can provide❤️.

As a caregiver for your husband and mother of a donor daughter, you are providing useful insights from both sides of kidney donation and kidney transplant.

What do you wish that you, caregiver, had known ahead of time?

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I agree, thank you! ❤

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@danhoe

I donated my left kidney to an unknown recipient in May of 2020 at the Phoenix Mayo hospital. My surgery and recovery went very smoothly. I would donate again if it was possible. I tired out easier than usual but I was able to get up and walk right away. I tried to get up every hour and walk as far as my body allowed. I think this really helped with recovery and I was able to hike a little at the Grand Canyon 3 weeks after surgery. I really paid attention to my body and rested whenever I felt I needed it. I was fortunate enough to not need pain meds (except Tylenol and sleep) after leaving the hospital the day after surgery. I was able to eat regularly after surgery. I drink a lot of water and my kidney is working like a charm. If you have any questions your team is definitely there for you after surgery for as long as you need. I am also happy to try to help from my experience. Blessings to you on this life changing journey.

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Bless you for your kindness!
And thank you, this is very incouraging. I'm a frequent walker, 2 mi in a.m. 1 mi in afternoon. It sounds like I should really try and walk plenty, drink water, and rest often as my body needs. I can bring all my bed pillows to cushion the long ride home. I am 56 donating to my 78 y.o. mom. We are excited but a little anxious. Thank you for your insights. Most appreciated!

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@rosemarya

@kristinkay, I was a kidney and liver recipient. I used it to prevent pain and to ease my fear of popping my abdominal clamps after surgery when coughing. It helps to hug it to the affected area,
Please know that I’m thinking of you as you prepare for and under go surgery next week.
Do you know the recipient?

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Hi and thank you for your response. Bless you for your linsight! My recipient is my 78 y.o. mom. She is in great health other than kidneys. I don't know what popping abdominal clamps means but can tell I don't want to pop mine, either! I'll be hugging that pillow. Thank you for sharing! My prayers are with you.

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@rosemarya

@tasher3433 - Please keep on rambling!!! Your first hand account of your experience is better than any textbook can provide❤️.

As a caregiver for your husband and mother of a donor daughter, you are providing useful insights from both sides of kidney donation and kidney transplant.

What do you wish that you, caregiver, had known ahead of time?

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Hi Rosemary! I always enjoy your posts, As a caregiver I wish I had known more about the possibility of organ rejection. It literally threw me for a loop. When you get the go ahead, because you want the transplant so badly, you kind of space that everything might not be perfect, at first. I did my research, that’s for sure, but I ignored the rejection, and concentrated on all the wonderful, good things that were coming! And so they did! And now, as of Oct, we have the complication of a 3mm kidney stone which does not look like it will pass. Due to the shortened, crooked ureter, surgery is required to remove it. Due to the location of the stone, a laser blast is not going to work. However, my husband has a consult Jan 26. Hopefully we can have the tests done here in Las Vegas and a video conference rather than fly in and out of Scottsdale! Every day is a new day!
I regret not taking time for me, too, as I crashed and burned 9 months post transplant. I have learned from that too. I am no good to anyone else if I don’t take some time for me, without guilt. My husband encourages me to do what makes me happy. Now, if we could kick Covid in the teeth, we can all carry on!
Best wishes to everyone entering this stage of your journeys. It is a gift.

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@kristinkay

Wow, thank you. This was very helpful information. We have a 10 hr drive back to Arkansas after discharge from Rochester. We'll stay in the area for about a week after getting out of the hospital for check ups. I heard I get a mug but didn't know if this was a 'congrats on donating a kidney' thing or what. .. sounds like I'll need to drink water like a camel.
I'm now going to bring all my bed pillows in the car for the drive home. We have many stops planned. I walk about 2 miles per day which sounds like will help me in restoration. I don't take many pills so not sure about the pill boxes. I wish I knew if I'm supposed to watch a special renal diet after donating. I'm thinking my lone remaining kidney might need tender care in dietary but don't know if I'm meeting w a nutritional expert. None scheduled so far.

You have been very helpful and reassuring, thank you. I hope and pray all goes well for your family as you progress forward. 🙏

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Good Morning! Just a quick update: as a healthy donor, you will be able to eat close to normally, maybe just smaller portions at first, your recipient Mom may have little interest in food, at first, but encourage her nonetheless. Peel the pears and apples, grilled cheese was popular, eggs and toast. It will improve, daily! For your wonderful Mom, she will so appreciate warm towels when she gets out of a shower, into a steamy bathroom. We were fortunate to have a w/d in our unit, and it was a step across the hall from dryer to bathroom. You GO, Ladies!

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@tasher3433

Good Morning! Just a quick update: as a healthy donor, you will be able to eat close to normally, maybe just smaller portions at first, your recipient Mom may have little interest in food, at first, but encourage her nonetheless. Peel the pears and apples, grilled cheese was popular, eggs and toast. It will improve, daily! For your wonderful Mom, she will so appreciate warm towels when she gets out of a shower, into a steamy bathroom. We were fortunate to have a w/d in our unit, and it was a step across the hall from dryer to bathroom. You GO, Ladies!

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Thank you. This sounds like good advice. My mom loves pears and apples. We will take good care of her. Thank you for all your tips.

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@kristinkay

Wow, thank you. This was very helpful information. We have a 10 hr drive back to Arkansas after discharge from Rochester. We'll stay in the area for about a week after getting out of the hospital for check ups. I heard I get a mug but didn't know if this was a 'congrats on donating a kidney' thing or what. .. sounds like I'll need to drink water like a camel.
I'm now going to bring all my bed pillows in the car for the drive home. We have many stops planned. I walk about 2 miles per day which sounds like will help me in restoration. I don't take many pills so not sure about the pill boxes. I wish I knew if I'm supposed to watch a special renal diet after donating. I'm thinking my lone remaining kidney might need tender care in dietary but don't know if I'm meeting w a nutritional expert. None scheduled so far.

You have been very helpful and reassuring, thank you. I hope and pray all goes well for your family as you progress forward. 🙏

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Congratulations on your upcoming donation!
I met with a nutritionist as part of my testing/evaluation visit. I may have met with someone after surgery but it's all sort of a blur. A couple days after donation, there were 4 or 5 appointments. I donated pre Covid so it could be that they've combined some appointments?
The kidney healthy eating websites seem like they contradict themselves with each paragraph on what you should and shouldn't have but I managed to at least cobble together info on better choices. Websites for eating with diabetes are easier to follow and similar to a healthy kidney diet. I don't remember that there are any real restrictions but it's been a few years so I could be wrong.
I think after staying for a week, your car ride should only be a little less comfortable than a regular 10 hour drive. We flew home -MN to OR, and the seat belts were not much fun but otherwise not bad. Mayo gave me a compression belt or brace and I wore that off and on for close to a month, it helped with seat belts and getting up and down.
The only pills I received were stool softeners, Tylenol & pain meds. After a few days, I was taking Tylenol late morning and pain meds at night, A pill box would be handy to keep it organized but not mandatory.
I can go back and look at my records or posts if you have any more questions but I'm positive that between the Drs, nurses and social worker, they'll get you set up.
Good luck to you and your recipient!

REPLY
@mauraacro

Congratulations on your upcoming donation!
I met with a nutritionist as part of my testing/evaluation visit. I may have met with someone after surgery but it's all sort of a blur. A couple days after donation, there were 4 or 5 appointments. I donated pre Covid so it could be that they've combined some appointments?
The kidney healthy eating websites seem like they contradict themselves with each paragraph on what you should and shouldn't have but I managed to at least cobble together info on better choices. Websites for eating with diabetes are easier to follow and similar to a healthy kidney diet. I don't remember that there are any real restrictions but it's been a few years so I could be wrong.
I think after staying for a week, your car ride should only be a little less comfortable than a regular 10 hour drive. We flew home -MN to OR, and the seat belts were not much fun but otherwise not bad. Mayo gave me a compression belt or brace and I wore that off and on for close to a month, it helped with seat belts and getting up and down.
The only pills I received were stool softeners, Tylenol & pain meds. After a few days, I was taking Tylenol late morning and pain meds at night, A pill box would be handy to keep it organized but not mandatory.
I can go back and look at my records or posts if you have any more questions but I'm positive that between the Drs, nurses and social worker, they'll get you set up.
Good luck to you and your recipient!

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Thank you for your thoughtful reply. I appreciate your input. I will figure out dietary restrictions I'm sure. Thanks for the encouragement on the return trip. I'm sure it will be fine. Just trying to figure out what I need. Blessings to you.

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