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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I can understand the 6 month post time near the hospital requirement. With all the checkups the first 6 months the closer the hospital is to you makes it much easier. How old is your husband? What is his physical health like? How many times a week does he get out and walk? Does he go out with friends or family? Is he active in any clubs, groups, work or religious organizations? If your husband sits all day in front of the TV, eats unhealthy foods and over 60 could be why he is still on dialysis. When I was on hemodialysis there was man in his 30's with 2 transplants. As a teenager he managed to kill his first transplant he didn't do much better in his 20's with his second kidney. I have a friend who after 28 years lost her transplant and is on hemodialysis twice a week now. If I have to go back on dialysis it will have to be hemo with no possibility of a transplant - age will knock me out of the chance of having a second transplant.

You did not read this here, Mayo is not the only place you can get a transplant, unless your insurance limits you. Have you ever been to Arizona? It is HOT! Jax's is humid and Florida is a sandbar. I would rather be in Rochester even with the snow, you can walk underground all over the city. Good luck.

mlmcg

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@mlmcg I had surgery in Rochester in January, boy was I wishing for an Arizona spot! The people in Rochester were great but I would have loved at least 1 day above freezing even with the tunnels and walkways.
I don't know if you meant it how I read your post but it sounded like you were blaming the patient for needing another kidney after 16 years. Some people make choices that can affect their health either positively or negatively, some can get away with doing anything (or nothing) and be fine, and some people don't have many choices or options. It sounds like you're shaming someone for having a health problem.
This is a sore subject for me so I may be seeing it differently. When my Mom was being wheeled into surgery to have a tumor removed, the nurse said to her that she must have smoked or eaten a lot of red meat. She didn't smoke and we didn't eat much meat but it sticks with me after 25 years what an awful thing that was to say to someone diagnosed with cancer, on her way into surgery.

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@mauraacro

@mlmcg I had surgery in Rochester in January, boy was I wishing for an Arizona spot! The people in Rochester were great but I would have loved at least 1 day above freezing even with the tunnels and walkways.
I don't know if you meant it how I read your post but it sounded like you were blaming the patient for needing another kidney after 16 years. Some people make choices that can affect their health either positively or negatively, some can get away with doing anything (or nothing) and be fine, and some people don't have many choices or options. It sounds like you're shaming someone for having a health problem.
This is a sore subject for me so I may be seeing it differently. When my Mom was being wheeled into surgery to have a tumor removed, the nurse said to her that she must have smoked or eaten a lot of red meat. She didn't smoke and we didn't eat much meat but it sticks with me after 25 years what an awful thing that was to say to someone diagnosed with cancer, on her way into surgery.

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Wow! Nurse ratchet? What a nasty person that nurse must be!! Too bad you didn’t think to say “no, she spent too much time around people like you!!” But that would have been mean.

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@judyth My Mom was polite and answered her. I was much younger, scared, and had a bad attitude. I said something about timing and choice of professions. I was not polite.

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No one wants to be sick and we all make bad choices at times like um... chocolate cake -yum! People deserve to be treated with compassion and dignity. It is a scary process getting sick or watching while someone you love gets sick. Transplants fail, people fail, it's a tough world but one that is much easier to get through with some kind words and compassionate coaching. Share the love, share the hope!

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@nianyi

@colleenyoung @keggebraaten @kequick @mlmcgee Thanks for the follow up. Been too busy to respond but now have a second. Yes, my husband is currently on dialysis (overnight PD) and has been since July 2017. Except for the fact that it keeps him alive and is much better than hemo, he hates it 🙂 -- it's simply no replacement for a real kidney. He had a living donor transplant in 2001 (paired exchange -- we were told we were about the 10th in country at that time), which lasted him 16 years. Leading up to that transplant, he did hemo, then the 4/day PD exchange for about 1 1/2 years. We've had three living donors come forward this go-around, none matching, but all willing to go the PKE route. All were disqualified for their own health reasons.

One of you asked about consecutive time need to be near the transplant facility and whether I meant pre- or post-surgery. I'm talking about post. I find quite a variance in what each center requires. I am familiar with the need for very frequent follow-up appointments, but some places want you live near their center for six months after surgery, whereas others say three weeks, followed by monthly visits up to a year and so on.

So suffice it to say, this is not our first rodeo. What's new to us is considering listing at an out-of-town facility and all that that involves. @kequick you said "our Arizona campus the wait is ~2.25 years. But SRTR actually reports a shorter wait time at our Florida campus – we're seeing ~4.45 years." I realize those are averages. . . how long would you place a Type B in that wait? The wait is so much shorter at Mayo-Arizona than almost everywhere else -- it's just that five-hour flight (that's of course after you stop what you're doing, grab your stuff, get the kid and dog squared away, book the flight and actually get to the airport) that is making us hesitate Would you recommend this?

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You said it well @nianya, sounds like this is definitely not your first rodeo! Regarding the SRTR data I shared, you’re exactly right – very important to note that those are averages. SRTR does include some detail on waiting averages by blood type, you should find that around page 4 of the Program Summary Report on a given transplant center.

Great point about the 5.5 hour flight. I’m not qualified to make a recommendation around whether or not that would be make sense for your husband’s case – have you consulted with your husband’s care team on the pros/cons of traveling for his transplant?

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@mauraacro

@mlmcg I had surgery in Rochester in January, boy was I wishing for an Arizona spot! The people in Rochester were great but I would have loved at least 1 day above freezing even with the tunnels and walkways.
I don't know if you meant it how I read your post but it sounded like you were blaming the patient for needing another kidney after 16 years. Some people make choices that can affect their health either positively or negatively, some can get away with doing anything (or nothing) and be fine, and some people don't have many choices or options. It sounds like you're shaming someone for having a health problem.
This is a sore subject for me so I may be seeing it differently. When my Mom was being wheeled into surgery to have a tumor removed, the nurse said to her that she must have smoked or eaten a lot of red meat. She didn't smoke and we didn't eat much meat but it sticks with me after 25 years what an awful thing that was to say to someone diagnosed with cancer, on her way into surgery.

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@mauraacro I believe there are several ways to read @mlmcg's post. I know patients who failed to honor their transplant, via food decisions, or lifestyle choices. I know pre-transplant patients who also consciously made poor decisions that affected their medical health and transplant chances, then proceeded to complain about the system, not taking any personal responsibility. I also know many people who got where they are through no choice of their own. Sometimes the truth is unpleasant, much like that nurse's comment was.
JMHO, Ginger

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Thank you @gingerw, that makes sense. Sometimes its hard for me to hear "tone" through posts, texts etc. I've definitely been on both sides of that.
It seems like it would be discouraging to learn of someone not honoring their transplant, especially if you or a loved one was waiting for one.

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@mauraacro

@mlmcg I had surgery in Rochester in January, boy was I wishing for an Arizona spot! The people in Rochester were great but I would have loved at least 1 day above freezing even with the tunnels and walkways.
I don't know if you meant it how I read your post but it sounded like you were blaming the patient for needing another kidney after 16 years. Some people make choices that can affect their health either positively or negatively, some can get away with doing anything (or nothing) and be fine, and some people don't have many choices or options. It sounds like you're shaming someone for having a health problem.
This is a sore subject for me so I may be seeing it differently. When my Mom was being wheeled into surgery to have a tumor removed, the nurse said to her that she must have smoked or eaten a lot of red meat. She didn't smoke and we didn't eat much meat but it sticks with me after 25 years what an awful thing that was to say to someone diagnosed with cancer, on her way into surgery.

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I am sorry that what I wrote was misunderstood. Transplanted kidneys do have a "shelf life". No one knows how the kidney was cared for before it was transplanted, which may have played a part in its life after the transplant. I have had limited experience knowing others who have had transplants. The meds that we take can reduce the life of the transplanted organs, not just kidneys. I know that if you have good reports for the first 10 years you are doing a good job. Anything after 10 years is remarkable. The greater the tissue match the less drugs are needed, the less stress on the kidney and body. Even though the doctors believe the kidney and body are a good match sometimes they are not.

I had my annual checkup yesterday and my meds were changed again. That could be good, or it could not be good. My body could be trying to get rid of that "thing" or they are becoming forever friends. Having a transplant is an experience the longer we can keep our transplant the more information doctors have learned about transplants, drugs needed and a million other things. Well, maybe not a million, but they know a lot more than they did.

Unfortunately your mother had a nurse she should never have had. You just overheard a conversation you should not have heard, and it sounds as if you have not been able let go of that conversation. You forgot to say if your mother made it through her surgery and how she is doing today.

mlmcg

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@mlmcg

I am sorry that what I wrote was misunderstood. Transplanted kidneys do have a "shelf life". No one knows how the kidney was cared for before it was transplanted, which may have played a part in its life after the transplant. I have had limited experience knowing others who have had transplants. The meds that we take can reduce the life of the transplanted organs, not just kidneys. I know that if you have good reports for the first 10 years you are doing a good job. Anything after 10 years is remarkable. The greater the tissue match the less drugs are needed, the less stress on the kidney and body. Even though the doctors believe the kidney and body are a good match sometimes they are not.

I had my annual checkup yesterday and my meds were changed again. That could be good, or it could not be good. My body could be trying to get rid of that "thing" or they are becoming forever friends. Having a transplant is an experience the longer we can keep our transplant the more information doctors have learned about transplants, drugs needed and a million other things. Well, maybe not a million, but they know a lot more than they did.

Unfortunately your mother had a nurse she should never have had. You just overheard a conversation you should not have heard, and it sounds as if you have not been able let go of that conversation. You forgot to say if your mother made it through her surgery and how she is doing today.

mlmcg

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@mlmcg thanks for that! I had a feeling it was the way I was reading it, not the way you meant it. I'm working on asking for clarification instead of letting things upset me. I have learned so much and I appreciate your response.
Transplants are amazing to me and I am in awe of the knowledge and skill that allow them to happen. I'm also impressed by the amount of information that the tranplantee and caregiver need to know and implement daily. Its hard work.
The surgery was not successful & she died about 8 months later. She had juvenile diabetes, then glaucoma in her 40's. A side effect of some of the meds was colon cancer but she told me that it gave her a few more years and she may have made the same decision even knowing the outcome.

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