Share this:
nianyi
@nianyi

Posts: 4
Joined: Sep 05, 2018

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

Posted by @nianyi, Wed, Sep 5 9:16am

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?

REPLY

Hi @nianyi and welcome to the Transplants group on Connect. What great questions. I'm bringing @rosemarya @jolinda @cehunt57 and @mlmcg into this discussion to share their experiences with you. You may be interested in these related discussions too:

– How many of you decided to move permanently to be near Mayo? https://connect.mayoclinic.org/discussion/how-many-of-you-decided-to-move-permanently-to-be-near-mayo/
– Kidney transplant https://connect.mayoclinic.org/discussion/kidney-transplant-1/
– Out of State kidney transplant https://connect.mayoclinic.org/discussion/out-of-state-kidney-transplant/

In fact, the 3 discussion in the list above led to this blog article by Mayo Clinic experts that answers some of your questions
– Q&A for Out-of-State Patients https://connect.mayoclinic.org/page/transplant/newsfeed/qa-for-out-of-state-patients/

Nianyi, wouldn't Mayo Clinic in Jacksonville, Florida be closer for you? Or is there a family or personal reason you would choose Arizona over the other Mayo Clinic locations?

Welcome to Connect @nianyi! I am Kristin, one of the moderators of this group who works closely with the transplant physicians at Mayo in Rochester, MN. To answer your question about what distance is reasonable to travel for kidney transplant, I can give you a bit of information. According to our surgical director in Minnesota, most of the time patients need to be at the hospital within at least 12 hours of a kidney becoming available. Sometimes this is possible through commercial air travel, but the nurse coordinators at any of the Mayo Clinic locations would help you determine what method of transportation is best for your situation.
I hope this answers your question. I am sure that many of the participants that Colleen tagged in her message to you have opinions on this topic as well.

@colleenyoung

Hi @nianyi and welcome to the Transplants group on Connect. What great questions. I'm bringing @rosemarya @jolinda @cehunt57 and @mlmcg into this discussion to share their experiences with you. You may be interested in these related discussions too:

– How many of you decided to move permanently to be near Mayo? https://connect.mayoclinic.org/discussion/how-many-of-you-decided-to-move-permanently-to-be-near-mayo/
– Kidney transplant https://connect.mayoclinic.org/discussion/kidney-transplant-1/
– Out of State kidney transplant https://connect.mayoclinic.org/discussion/out-of-state-kidney-transplant/

In fact, the 3 discussion in the list above led to this blog article by Mayo Clinic experts that answers some of your questions
– Q&A for Out-of-State Patients https://connect.mayoclinic.org/page/transplant/newsfeed/qa-for-out-of-state-patients/

Nianyi, wouldn't Mayo Clinic in Jacksonville, Florida be closer for you? Or is there a family or personal reason you would choose Arizona over the other Mayo Clinic locations?

Jump to this post

Thanks, Colleen. I will review the links. First — not that it makes a big difference here — I meant to say my husband is blood type-B, not O. The reason we're looking at Mayo in Arizona is according to the data I've been looking at on the txmultilisting site (can't link it since I'm a new poster 🙁 ), the wait in Arizona is a little over two years, whereas Mayo in Jacksonville it's over seven. Moving to be near the facility isn't an option for us ahead of time, though we do realize we will need to be in the vicinity for a period of time post-discharge. Is there a bare minimum amount of consecutive time that patients and their support person need to commit to initially? I've contacted quite a number of facilities, and I've found this varies greatly — one said three weeks and another eight.

Liked by cehunt57

Hi @nianyi – I'm another moderator of this group, working closely with @keggebraaten and @colleenyoung. So good to see you've been doing your research! I'm only somewhat familiar with txmultilisting.com…have you also spent time on srtr.org? From that site, you can pull data on the average time to transplant for all of the transplant centers across the country. You're correct that for the majority of kidney transplant patients at 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. If you end up looking into SRTR, their reports also include outcomes, which is another important factor in your decision!

I want to confirm your other question about required consecutive time that patients and their support person need to commit to… are you referring to before transplant or after?

@kequick

Hi @nianyi – I'm another moderator of this group, working closely with @keggebraaten and @colleenyoung. So good to see you've been doing your research! I'm only somewhat familiar with txmultilisting.com…have you also spent time on srtr.org? From that site, you can pull data on the average time to transplant for all of the transplant centers across the country. You're correct that for the majority of kidney transplant patients at 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. If you end up looking into SRTR, their reports also include outcomes, which is another important factor in your decision!

I want to confirm your other question about required consecutive time that patients and their support person need to commit to… are you referring to before transplant or after?

Jump to this post

@nianyi! Another question for you… re-reading your original post and I'm wondering: is your husband currently on the waiting list? If so, for how long? And is he on dialysis? If so, he may be closer to transplant than the stated averages above. Has he considered living donation? That could shorten his wait quite a bit!

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

My first question would be, Is your husband on dialysis? If not, Why? If so, What is the hurry for a transplant?

I was on dialysis from October 2003 to February 2008. I had my evaluation for the transplant in March of 2003 with a 5-6 year wait time. It was an hour drive time to the hospital.

I know lots of things have changed in the last 10 years and what I went through will not be what you and your husband will have to look forward to. Some of the questions I would want to know the answers to would be:

How much time would I have once a kidney is available before I had to be at the hospital? (I received the call at 4:00 PM to tell me to be at the hospital as soon as I could. I was there a little before 2:00 AM I had to let my driver know, have dialysis, eat and take my meds before I could leave.)

Once I have had the transplant where do I have to have the check-ups for the first year? and there are lots of them. (Once I had the transplant I was in the hospital for 5 days, I had to report twice a week for the first 2 weeks to the hospital for an evaluation with the transplant doctors. Then it was once a week for 2 weeks. Followed by every other week for a month. I was not having any problems with the kidney and my body getting along, so I was able to get blood work done at home with trips to the hospital to see the transplant doctors getting further apart. Now I have to have blood work every 6 weeks, here, and check-ups once a year with the transplant doctors. I see my doctor, here, every 3 months, with e-mail access whenever I have an issue, he is my PCP and nephrologist.)

What happens if the kidney is not a match? (Fortunately, the kidney and I were a good match. Once I was checked into the hospital they drew 10 vials of blood to see if we, the kidney and my body, were compatible. It was over 12 hours before I was told that I was going to get the kidney. IF we were not compatible I would just get dressed and go home.)

How soon can I fly and how often? How many different pills will I have to take? Will I have to take them forever? How much will it cost me, out of pocket, the first year? (I have not flown for almost 20 years. I now take 2 different meds for the kidneys, I also take other meds for other things. I was told that my cost the first year would be $10,000, and that was just about what I paid, Medicare and my insurance paid the rest. I was on one med for 3 months that cost me $1,000 a month.)

I hope I was not too scary with what I shared with you. My kidney and I are happy, if I see a doctor I have not seen before – like in ER – I always tell them that the kidney comes first. That lets them know that if they have to do something that they have to take care of my kidney. Good luck.

mlmcg

@mlmcg

My first question would be, Is your husband on dialysis? If not, Why? If so, What is the hurry for a transplant?

I was on dialysis from October 2003 to February 2008. I had my evaluation for the transplant in March of 2003 with a 5-6 year wait time. It was an hour drive time to the hospital.

I know lots of things have changed in the last 10 years and what I went through will not be what you and your husband will have to look forward to. Some of the questions I would want to know the answers to would be:

How much time would I have once a kidney is available before I had to be at the hospital? (I received the call at 4:00 PM to tell me to be at the hospital as soon as I could. I was there a little before 2:00 AM I had to let my driver know, have dialysis, eat and take my meds before I could leave.)

Once I have had the transplant where do I have to have the check-ups for the first year? and there are lots of them. (Once I had the transplant I was in the hospital for 5 days, I had to report twice a week for the first 2 weeks to the hospital for an evaluation with the transplant doctors. Then it was once a week for 2 weeks. Followed by every other week for a month. I was not having any problems with the kidney and my body getting along, so I was able to get blood work done at home with trips to the hospital to see the transplant doctors getting further apart. Now I have to have blood work every 6 weeks, here, and check-ups once a year with the transplant doctors. I see my doctor, here, every 3 months, with e-mail access whenever I have an issue, he is my PCP and nephrologist.)

What happens if the kidney is not a match? (Fortunately, the kidney and I were a good match. Once I was checked into the hospital they drew 10 vials of blood to see if we, the kidney and my body, were compatible. It was over 12 hours before I was told that I was going to get the kidney. IF we were not compatible I would just get dressed and go home.)

How soon can I fly and how often? How many different pills will I have to take? Will I have to take them forever? How much will it cost me, out of pocket, the first year? (I have not flown for almost 20 years. I now take 2 different meds for the kidneys, I also take other meds for other things. I was told that my cost the first year would be $10,000, and that was just about what I paid, Medicare and my insurance paid the rest. I was on one med for 3 months that cost me $1,000 a month.)

I hope I was not too scary with what I shared with you. My kidney and I are happy, if I see a doctor I have not seen before – like in ER – I always tell them that the kidney comes first. That lets them know that if they have to do something that they have to take care of my kidney. Good luck.

mlmcg

Jump to this post

@mlmcg These are all great points to bring up. My husband was on PD dialysis for 5.5 years. Originally both his kids said they would test to see if they would match as living donor, then turned their backs on him. Here in CA, wait time may be 3 to 8 years, depending on where you live/list. He had a deceased donor who matched him excellently.
Ginger

Liked by cehunt57, jin51

@gingerw

@mlmcg These are all great points to bring up. My husband was on PD dialysis for 5.5 years. Originally both his kids said they would test to see if they would match as living donor, then turned their backs on him. Here in CA, wait time may be 3 to 8 years, depending on where you live/list. He had a deceased donor who matched him excellently.
Ginger

Jump to this post

Kids will be kids, no matter their age. I had a deceased donor too. I was not a candidate for PD, too many surgeries in the abdomen, so I had hemodialysis, 4 days a week. I did have the work up in another area of CA, with a much shorter wait list, so I was on 2 list. Less than 2 weeks later I got THE CALL, from the one closer to home. I wanted a perfect match, which happen but almost never. I had a very good match so the amount of meds I take is low.

mlmcg

Liked by cehunt57

@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?

Liked by cehunt57

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

Liked by cehunt57, gingerw

@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.

@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.

Jump to this post

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.

@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.

Liked by cehunt57, jodeej, gingerw

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!

Please login or register to post a reply.