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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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Replies to "@colleenyoung @keggebraaten @kequick @mlmcgee Thanks for the follow up. Been too busy to respond but now..."

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?