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deirdosh
@deirdosh

Posts: 6
Joined: Apr 03, 2016

Planning for a Mayo kidney transplant. How long is the wait time?

Posted by @deirdosh, Apr 3, 2016

how long wait time is usual for a Mayo kidney transplant after being placed on the list? I am on the list now, and have been for 18 months. The main concern I have is finding temporary housing on “immediate” notice when I am notified that it’s time. Is there any way to get this set up in advance? I was able to find possibilities during the screening process, but the immediate nature of this is what concerns me. Maybe members might have suggestions. thank you.

REPLY

Hi @deirdosh, welcome to Connect.
I moved your message to the Transplant group to connect you with people who have “been there”. I’m tagging @rosemarya @wmoser2613 @sandras all who have had kidney transplants. @rosemarya, I believe was treated at Mayo Clinic. @wmoser2613 and @sandras I’m not sure.

@deirdosh, you may also be interested in reading the other discussions in the Transplant group https://connect.mayoclinic.org/group/transplants/, in particular this thread https://connect.mayoclinic.org/discussion/knee-replacement/ where you’ll meet several people who are on the waitlist and preparing for a transplant.

Hey @deirdosh! Are you planning to be transplanted at our AZ, MN or FL campus? There is actually housing for transplant patients at all 3 Mayo Clinic campuses. MN housing: http://www.mayoclinic.org/departments-centers/transplant-center/minnesota. AZ housing: http://www.mayoclinic.org/patient-visitor-guide/arizona/travel-lodging-maps/lodging/village-mayo-clinic. FL housing: http://www.mayoclinic.org/departments-centers/transplant-center/florida.

Kidney allocation is based on several factors, which can all affect your wait time: https://optn.transplant.hrsa.gov/learn/about-transplantation/how-organ-allocation-works/. Hope this helps!

@LaurenSpiceland

Hey @deirdosh! Are you planning to be transplanted at our AZ, MN or FL campus? There is actually housing for transplant patients at all 3 Mayo Clinic campuses. MN housing: http://www.mayoclinic.org/departments-centers/transplant-center/minnesota. AZ housing: http://www.mayoclinic.org/patient-visitor-guide/arizona/travel-lodging-maps/lodging/village-mayo-clinic. FL housing: http://www.mayoclinic.org/departments-centers/transplant-center/florida.

Kidney allocation is based on several factors, which can all affect your wait time: https://optn.transplant.hrsa.gov/learn/about-transplantation/how-organ-allocation-works/. Hope this helps!

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Hello. thank you so much for your reply.

I am scheduled for the AZ campus, so I will check on the link you sent. Perhaps they have a waiting list I can get on. Have you received a transplant there? If so, did you know beforehand when you needed to begin getting ready?

How long were you actually at the hospital post-op, and how long before you were back at home? Did you stay at the Campus housing?

Hope I am not wrong using this e-mail format to talk to you, so please forgive me if this is an inconvenience and let me know the correct way to do this.

Thanks so much for your help.

Donald

@colleenyoung

Hi @deirdosh, welcome to Connect.
I moved your message to the Transplant group to connect you with people who have “been there”. I’m tagging @rosemarya @wmoser2613 @sandras all who have had kidney transplants. @rosemarya, I believe was treated at Mayo Clinic. @wmoser2613 and @sandras I’m not sure.

@deirdosh, you may also be interested in reading the other discussions in the Transplant group https://connect.mayoclinic.org/group/transplants/, in particular this thread https://connect.mayoclinic.org/discussion/knee-replacement/ where you’ll meet several people who are on the waitlist and preparing for a transplant.

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Hello, Colleen.

Thank you so much for your reply. Wasn’t expecting it to be so QUICK!

Will definitely follow up as you suggested. This is a nervous time for me—don’t want to mess it up.

Donald

Hey Donald, no problem! Glad that was helpful. I have not had a transplant — I work in Mayo Clinic marketing.

Mayoclinic.org states that kidney transplant recipients generally spend 3-4 days in the hospital to recover and need to be near the hospital for 2-3 weeks after surgery to be monitored by the transplant team: http://www.mayoclinic.org/departments-centers/transplant-center/kidney-transplant/preparing/process. I’d encourage you to reach out to your transplant nurse coordinator to discuss the timeline for your transplant, as the details of your health may make a difference. Additionally, you could go ahead and contact the Help in Healing Home to learn how they manage reservations: http://www.helpinhealinghome.org/contact-information/. They serve many transplant patients so they will understand your needs and that you will not know the date of your transplant in advance.

There may be other Connect members who were transplanted in AZ and could tell you about their experiences, so you might try posting in one of the discussion threads Colleen suggested, as well.

Best of luck! Let me know if I can help you find any additional information. -Lauren

Hi, I received my kidney and liver at Mayo MN. I stayed at the Gift of Life House there, and I encourage you to check out the transplant patient housing links AZ that Lauren provided. Prior to my visit to Rochester, I had already looked into this wonderful place, and had made phone contact with them. With all of the uncertainties related to transplant, it is comforting to know that you can have a “home away from home” for healing and support… I was in hospital for a week post surgery and discharged from outpatient service 21 days after my transplant. However, each patient is unique and times and aftercare can vary significantly. Take your questions to your transplant team, they will be able to address them for you.
Rosemary

@colleenyoung

Hi @deirdosh, welcome to Connect.
I moved your message to the Transplant group to connect you with people who have “been there”. I’m tagging @rosemarya @wmoser2613 @sandras all who have had kidney transplants. @rosemarya, I believe was treated at Mayo Clinic. @wmoser2613 and @sandras I’m not sure.

@deirdosh, you may also be interested in reading the other discussions in the Transplant group https://connect.mayoclinic.org/group/transplants/, in particular this thread https://connect.mayoclinic.org/discussion/knee-replacement/ where you’ll meet several people who are on the waitlist and preparing for a transplant.

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Happy to help Donald. I can understand that this is a nervous time. My husband always tells me, “put your worry into action.” And that’s exactly what you’re doing, with great results. @LaurenSpiceland and @rosemarya have provided great info. Keep us posted.

@colleenyoung

Hi @deirdosh, welcome to Connect.
I moved your message to the Transplant group to connect you with people who have “been there”. I’m tagging @rosemarya @wmoser2613 @sandras all who have had kidney transplants. @rosemarya, I believe was treated at Mayo Clinic. @wmoser2613 and @sandras I’m not sure.

@deirdosh, you may also be interested in reading the other discussions in the Transplant group https://connect.mayoclinic.org/group/transplants/, in particular this thread https://connect.mayoclinic.org/discussion/knee-replacement/ where you’ll meet several people who are on the waitlist and preparing for a transplant.

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I received a kidney and liver transplant at Mayo Jacksonville. I lived rather close to the hospital already, but after transplant decided to stay on campus at one of the motels to ease a one hour commute. There are plenty of options available in Jax, and would assume the same is true for the other two campuses as well. Check with social worker — they have a wealth of suggestions.

@colleenyoung

Hi @deirdosh, welcome to Connect.
I moved your message to the Transplant group to connect you with people who have “been there”. I’m tagging @rosemarya @wmoser2613 @sandras all who have had kidney transplants. @rosemarya, I believe was treated at Mayo Clinic. @wmoser2613 and @sandras I’m not sure.

@deirdosh, you may also be interested in reading the other discussions in the Transplant group https://connect.mayoclinic.org/group/transplants/, in particular this thread https://connect.mayoclinic.org/discussion/knee-replacement/ where you’ll meet several people who are on the waitlist and preparing for a transplant.

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Thank you for your response. I will follow your suggestion.

@rosemarya

Hi, I received my kidney and liver at Mayo MN. I stayed at the Gift of Life House there, and I encourage you to check out the transplant patient housing links AZ that Lauren provided. Prior to my visit to Rochester, I had already looked into this wonderful place, and had made phone contact with them. With all of the uncertainties related to transplant, it is comforting to know that you can have a “home away from home” for healing and support… I was in hospital for a week post surgery and discharged from outpatient service 21 days after my transplant. However, each patient is unique and times and aftercare can vary significantly. Take your questions to your transplant team, they will be able to address them for you.
Rosemary

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Thank you for your reply. I will take your suggestion and start getting the housing situation resolved. I have been on the list for 18 months now, so I need to get everything in order quickly.

@LaurenSpiceland

Hey Donald, no problem! Glad that was helpful. I have not had a transplant — I work in Mayo Clinic marketing.

Mayoclinic.org states that kidney transplant recipients generally spend 3-4 days in the hospital to recover and need to be near the hospital for 2-3 weeks after surgery to be monitored by the transplant team: http://www.mayoclinic.org/departments-centers/transplant-center/kidney-transplant/preparing/process. I’d encourage you to reach out to your transplant nurse coordinator to discuss the timeline for your transplant, as the details of your health may make a difference. Additionally, you could go ahead and contact the Help in Healing Home to learn how they manage reservations: http://www.helpinhealinghome.org/contact-information/. They serve many transplant patients so they will understand your needs and that you will not know the date of your transplant in advance.

There may be other Connect members who were transplanted in AZ and could tell you about their experiences, so you might try posting in one of the discussion threads Colleen suggested, as well.

Best of luck! Let me know if I can help you find any additional information. -Lauren

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thank you, Lauren, for your reply. I’m sure glad I found the Mayo Connect forum, and will start checking the info from several responses I have received.

Check with your social worker. They should be able to help you with this area. Fortunately I had a live donor so was able to have a more organized plan. Good luck on your journey. You are in excellent hands!

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