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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@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 Recently I met a kidney recipient, who has had his new kidney over 40 years! It just recently started to fail, which we felt was right, as the gifted kidney is 99 yrs old!! So, he is going to go back on dialysis soon, and try for another kidney. We know my husband's donor was a male in mid-30s, so about 25 yrs younger than him. We don't know the circumstances, but we are honoring the life of the donor everyday.
Ginger

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@mauraacro

@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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If your mother had Type 1, juvenile diabetes, she was a fighter to have lived long enough to have had you. Diabetes, just like cancer was a death sentence for most people before the 70's. My grandmother was diagnosed with cancer in the 50's send to Rochester, came home and died in her late 80's many, many years later. It sounds as it did not matter the hand your mother was dealt she laughed at it and beat the odds. Even though her surgery failed she laughed at the nurse and said see "I lived through that failed surgery."

Your mother was a good teacher, she taught by example. A good example! Just remember how hard she had to work to show you what you are to do when you do not like the hand you are dealt. Yes, meds have side effects, even good meds, it is how you live with the effects that can tell what kind of person you are. Remember all the good your mother did when you are ready to throw in your hand. Good luck.

mlmcg

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@gingerw

@mlmcg Recently I met a kidney recipient, who has had his new kidney over 40 years! It just recently started to fail, which we felt was right, as the gifted kidney is 99 yrs old!! So, he is going to go back on dialysis soon, and try for another kidney. We know my husband's donor was a male in mid-30s, so about 25 yrs younger than him. We don't know the circumstances, but we are honoring the life of the donor everyday.
Ginger

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Ninety-nine years old? I had a transplant doc tell me about a patient he had that had his kidney for over 40 years and he received it when he was about 10 years old. It can happen, 40 years ago transplants were in their baby stage. Doctors have learned so much, most to the time it from their patients. Most people are on dialysis 6 months after they have been diagnosed with end-stage-kidney failure, not 3 years. I figured the only way I could help my resident kidneys was by what I put in my mouth. Animal protein destroy kidneys, especially beef, so I went on a vegetarian diet. My doctor was so surprised, then he had most of his new patients try the vegetarian diet. Once I was on dialysis I had to eat animal protein, even today I do not eat beef, my body does not like it. I like my veggies. It was harder for me to go back to animal protein than giving it up.

If someone can live with the same kidney for 40 years he could be put at the top of the list to get another kidney.

mlmcg

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@kequick

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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Fair enough. . . I don't know that he's spoken specifically with his team about distance and how far is reasonable, just about going out of town in general. I feel confident on OUR end about out ability to pull it off and get there as fast as we can. I'm more concerned about the likelihood of the hospital skipping over us when a kidney comes up because of how far away we are. I've been told by one hospital -- and likely they're all like this -- that that certainly can happen, depending on the situation with that particular kidney. It may be that its viability would be diminished if they waited for someone far away to get there. So, if for example in the Arizona case if it took us 10 hours from the time we got that phone call to get to the hospital, are we significantly lowering our chances of even getting the call to begin with? Can you give me an average of how long the hospital needs the patient there from the time of the call? I wouldn't be harping on this if I wasn't so interested in the Mayo Clinic in Arizona 🙂 (BTW, I've called and spoken to about 25 facilities, so this doesn't come without a good bit of research).

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Hi @nianyi - We welcome the harping! And I'm glad to hear of your strong interest in our Arizona campus. I consulted a nurse manager from our transplant center in Arizona and she said it's very uncommon that a patient would be "skipped over" due to time, unless (as you noted) kidney viability is at risk. There are many out-of-state patients who receive transplants at Mayo Clinic. They just know that when they do get the call, they have to come immediately.

Also regarding your other question, about how long patients have to remain close to the hospital post-transplant, it varies. Our nurse said it can be as little as six weeks, but can be longer and just really depends on the specific case and how recovery is going. I hope that helps!

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@nianyi

Fair enough. . . I don't know that he's spoken specifically with his team about distance and how far is reasonable, just about going out of town in general. I feel confident on OUR end about out ability to pull it off and get there as fast as we can. I'm more concerned about the likelihood of the hospital skipping over us when a kidney comes up because of how far away we are. I've been told by one hospital -- and likely they're all like this -- that that certainly can happen, depending on the situation with that particular kidney. It may be that its viability would be diminished if they waited for someone far away to get there. So, if for example in the Arizona case if it took us 10 hours from the time we got that phone call to get to the hospital, are we significantly lowering our chances of even getting the call to begin with? Can you give me an average of how long the hospital needs the patient there from the time of the call? I wouldn't be harping on this if I wasn't so interested in the Mayo Clinic in Arizona 🙂 (BTW, I've called and spoken to about 25 facilities, so this doesn't come without a good bit of research).

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@Gianni In my husband's case, he was first called at midnight, then a second call at 7:30am to abstain from eating rest of the day. In that call they said organ harvest would begin at 4:30pm. The call to "come on in" was at 7pm. At that point he drove from Los Angeles to San Diego in record time.
Ginger

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@nianyi

Fair enough. . . I don't know that he's spoken specifically with his team about distance and how far is reasonable, just about going out of town in general. I feel confident on OUR end about out ability to pull it off and get there as fast as we can. I'm more concerned about the likelihood of the hospital skipping over us when a kidney comes up because of how far away we are. I've been told by one hospital -- and likely they're all like this -- that that certainly can happen, depending on the situation with that particular kidney. It may be that its viability would be diminished if they waited for someone far away to get there. So, if for example in the Arizona case if it took us 10 hours from the time we got that phone call to get to the hospital, are we significantly lowering our chances of even getting the call to begin with? Can you give me an average of how long the hospital needs the patient there from the time of the call? I wouldn't be harping on this if I wasn't so interested in the Mayo Clinic in Arizona 🙂 (BTW, I've called and spoken to about 25 facilities, so this doesn't come without a good bit of research).

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@nianyi for my husband's liver transplant we were told that we needed to be able to get to the hospital in under 10 hours. I don't know what the time frame is for a kidney.
Blessings,
JoDee

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Before my transplant, I had been flown via medical transport from ICU in KY to Mayo Rochester (800 miles). I had been hospitalized in critical condition with ESLD and acute kidney failure. After spending 2 weeks in hospital in Rochester, I was told to stay nearby. Fortunately, we were able to stay at the Gift of Life Transplant House to wait for transplant and during recovery. Total of 11 weeks. None of this was planned ahead of time, but it worked out.

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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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@nianyi I just wanted to let you know that someone I know from Texas just had a liver transplant at Mayo in Rochester. His transplant team did want him to have transportation set up before they would activate him, but it was possible!
Blessings,
JoDee

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