What's a reasonable distance for traveling for a kidney transplant?

Posted by nianyi @nianyi, Sep 5, 2018

First time on this site 🙂 We are on the east coast where the wait for my husband (type O, age 53) is about 6-8 years. We're considering listing at centers with significantly shorter lists, some of which are quite far from us. Our insurance has a sizeable travel stipend, so fortunately we don't think money for travel will be too much of a problem. We're mostly concerned about the amount of time it takes from getting "that call" to laying on the operating table when getting on a plane is involved. What is a safe distance to consider? Would the Mayo clinic in Arizona be too far for traveling from the DC area?

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Profile picture for mlmcg @mlmcg

What did we do before medical transport? Any time I hear of a critical condition and medical transport in the same sentence it gives me chills. Especially when the person who went through the "ride" is the one telling about it.

Do you remember the trip or were you told about it?
mlmcg

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@mlmcg, Here is a photo of early medical transport. I took this photo when I was at Mayo for my transplant.

I experienced my first medical ride, when I was transported from my local ER to the Univ of KY when I had acute renal failure. After 5 days in ICU I had ambulance ride to airport, then medical airplane flight, then another ambulance ride to Mayo Methodist Hospital in Rochester.
My memories are a combination of my own (mostly when my body was jostled or when someone spoke to me) and more details from my family members and my husband who was at my side for most of it. There are voids in story, and I have used medical records to fill in most of those. The really interesting thing is that My point of view, as patient, is not same as my husbands.

I was supposed to get a liver transplant in KY, this was not supposed to happen! Fortunately, my transplant team in KY knew where I needed to be.
I have made it my habit to say a prayer anytime that I encounter an ambulance - for the patient, and for the Emergency Responders. My chills and tears have disappeared over the 9 years since that happened. I once even got brave enough to step inside of an ambulance that was displayed at a community health event.

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Profile picture for Rosemary, Volunteer Mentor @rosemarya

@mlmcg, Here is a photo of early medical transport. I took this photo when I was at Mayo for my transplant.

I experienced my first medical ride, when I was transported from my local ER to the Univ of KY when I had acute renal failure. After 5 days in ICU I had ambulance ride to airport, then medical airplane flight, then another ambulance ride to Mayo Methodist Hospital in Rochester.
My memories are a combination of my own (mostly when my body was jostled or when someone spoke to me) and more details from my family members and my husband who was at my side for most of it. There are voids in story, and I have used medical records to fill in most of those. The really interesting thing is that My point of view, as patient, is not same as my husbands.

I was supposed to get a liver transplant in KY, this was not supposed to happen! Fortunately, my transplant team in KY knew where I needed to be.
I have made it my habit to say a prayer anytime that I encounter an ambulance - for the patient, and for the Emergency Responders. My chills and tears have disappeared over the 9 years since that happened. I once even got brave enough to step inside of an ambulance that was displayed at a community health event.

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Thank you for the photo, where are the horses? I have had a few ambulance rides, non-emergency, and remember the jostling and watching the attendant moving around with the ambulance in motion working on me. When I see an ambulance heading for the hospital without lights and sirens I know it is not an emergency. I get chills when the lights and sirens are on because I know what it means EMERGENCY get out of my way.

mlmcg

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Profile picture for mlmcg @mlmcg

Thank you for the photo, where are the horses? I have had a few ambulance rides, non-emergency, and remember the jostling and watching the attendant moving around with the ambulance in motion working on me. When I see an ambulance heading for the hospital without lights and sirens I know it is not an emergency. I get chills when the lights and sirens are on because I know what it means EMERGENCY get out of my way.

mlmcg

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Maybe they were outside grazing on the beautiful tulips!

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Profile picture for Ginger, Volunteer Mentor @gingerw

My husband listed at 2 different transplant centers, based on what his insurance would cover. The center he ended up at was about 175 miles away, which he drove to when the call came in. The kidney was harvested at 4:30pm, and the surgery for him was at 8:30pm. Our friend was just transplanted Tues 28 Aug, and drove from Los Angeles to Mayo Arizona when they called her. Remember that your time on dialysis [how long you've been getting dialyzed] is used to determine your place on the list. Good luck,
Ginger

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@gingerw hi Ginger,
My sister was just listed at Mayo Clinic in PHX and we reside in Los Angeles. Do you recall how long your friend had to get to PHX and did she drive or flew? Thank you.

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Profile picture for mariad1958 @mariad1958

@gingerw hi Ginger,
My sister was just listed at Mayo Clinic in PHX and we reside in Los Angeles. Do you recall how long your friend had to get to PHX and did she drive or flew? Thank you.

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@mariad1958 It's about 400 miles. Driving may be impacted by weather, or time of day, or if there are co-drivers. A lot may depend on what the transplant team tells your sister. How far away do they want her to be? Once she has information, she can better make decisions. Are there friends or family members who are nearby? Remember, she will need to be there near the transplant center for about 30 days after the transplant procedure.
Ginger

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Profile picture for Ginger, Volunteer Mentor @gingerw

@mariad1958 It's about 400 miles. Driving may be impacted by weather, or time of day, or if there are co-drivers. A lot may depend on what the transplant team tells your sister. How far away do they want her to be? Once she has information, she can better make decisions. Are there friends or family members who are nearby? Remember, she will need to be there near the transplant center for about 30 days after the transplant procedure.
Ginger

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@gingerw we will be renting an Airbnb for 5-6 weeks.

They haven't told us how long she has to get to Mayo Clinic from Los Angeles. I am just trying to tentative plan ahead, already have a few co-drivers and keep logs of reg Southwest airline flights.

Just trying to find a post that indicates how long from when you get called with a kidney offer, they give to her to hospital.

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Profile picture for mariad1958 @mariad1958

@gingerw we will be renting an Airbnb for 5-6 weeks.

They haven't told us how long she has to get to Mayo Clinic from Los Angeles. I am just trying to tentative plan ahead, already have a few co-drivers and keep logs of reg Southwest airline flights.

Just trying to find a post that indicates how long from when you get called with a kidney offer, they give to her to hospital.

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@mariad1958 It has been noted that a kidney could be viable for transplant up to 36 hours after a donor death, for the procedure. But I am sure your transplant center would not really want to try to go that long! Truly, I don't think there is a set rule, it is more on a case-by-case basis with the circumstances around each case.

Is she doing a deceased donor transplant, or living donor?
Ginger

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Profile picture for mariad1958 @mariad1958

@gingerw we will be renting an Airbnb for 5-6 weeks.

They haven't told us how long she has to get to Mayo Clinic from Los Angeles. I am just trying to tentative plan ahead, already have a few co-drivers and keep logs of reg Southwest airline flights.

Just trying to find a post that indicates how long from when you get called with a kidney offer, they give to her to hospital.

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@mariad1958, you sound like someone who is organized and likes to be prepared with plan A, B and C if necessary. This will serve you well as you help your sister. She is lucky to have you.

You might find these related discussions helpful:
- Waiting for the Call: What needs to get done at home before you go?https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/
- Packing question: What did you have ready for "the call"?https://connect.mayoclinic.org/discussion/packing-question/

Also see this Mayo blog
- Q&A for Out-of-State Patients https://connect.mayoclinic.org/blog/transplant/newsfeed-post/qa-for-out-of-state-patients/

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Profile picture for Ginger, Volunteer Mentor @gingerw

@mariad1958 It has been noted that a kidney could be viable for transplant up to 36 hours after a donor death, for the procedure. But I am sure your transplant center would not really want to try to go that long! Truly, I don't think there is a set rule, it is more on a case-by-case basis with the circumstances around each case.

Is she doing a deceased donor transplant, or living donor?
Ginger

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@gingerw she's on the list for possibly deceased donor, we were unable to get a living donor. I attempted to donate and didn't qualify for health reasons of my own.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@mariad1958, you sound like someone who is organized and likes to be prepared with plan A, B and C if necessary. This will serve you well as you help your sister. She is lucky to have you.

You might find these related discussions helpful:
- Waiting for the Call: What needs to get done at home before you go?https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/
- Packing question: What did you have ready for "the call"?https://connect.mayoclinic.org/discussion/packing-question/

Also see this Mayo blog
- Q&A for Out-of-State Patients https://connect.mayoclinic.org/blog/transplant/newsfeed-post/qa-for-out-of-state-patients/

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@colleenyoung thank you.

Yes, I have a few tentative plans already prepared. This will help greatly.

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