I'm considering being referred to another hospital for a preemptive transplant but both are in the same USOS Region. They are different states, one in KS and the other in MO. The one in KS is closest but the one in MO says they have a shorter wait time AND the website has all sorts of information on kidney transplant while the one in KS has nothing in detail. I'm frustrated at the very beginning of this journey with the total lack of communication or information. I've yet to be seen for any kind of orientation or evaluation or even know when/if that might be. In the meantime I have work trips scheduled, I plan on going to see my granddaughter the end of Oct and have other appointments scheduled. Several of which I've already rescheduled due to my having had Covid.
So does anyone know if you can list at multiple hospitals in the same UNOS region?
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horsie63
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When I was waiting for a transplant I was listed both at the U of WI in Madison, WI and at Froedtert Hospital in Milwaukee, WI. They are about 90 miles apart and definitely in the same UNOS region. University of WI called me first and I have had a very successful transplant almost 23 years ago.
Assuming your insurance will pay for multiple evaluations, you can probably list at both. However, generally there is not an advantage to list at two center that are relatively close as they would draw on the same donor pool.I would advise you not to make decisions based on a transplant center's website as the hospital's IT people are not the people in the transplant center.
Have you been referred (usually done by your nephrologist)? Until a transplant center receives your information it is not going to schedule your orientation nor evaluation. Find out your exact status and move forward as time is critical when your kidney function is declining.
Yes, my nephrologist referred me to the KU Med Transplant Hospital. I've talked on the phone briefly with them, they wanted updated mammo and pap which I have done and let them know so now I'm hanging waiting to see if they call me to come there. Of course they'll call when I am out of town for a work trip or have something else scheduled which is what I find so frustrating. Just schedule it already and then I can find work arounds as needed.
So if not through the website where do you suggest I find information on the particular hospitals closest to me. And since I'm in such a rural area none are closer than 3 hours that my insurance considers "in network".
You need to interview the transplant center as much as they need to interview and assess you. Your level of comfort and trust with the medical staff is crucial, and how well they inform you and answer your questions is important. You are going to see a lot of them, and so you need to feel good about being in their care.
Hi Dexter do you have suggestions on how to go about this? The closest that my insurance will cover is 3 hours away and the next is over 4 hours so I can't just drop in. Do you call them?
I assume you have a local nephrologist that you trust. Start by asking them. If you can find local transplant recipients, ask about their experiences at the two centers. I was lucky that my center is less than an hour away. You will probably have to stay in the area of the hospital for the first two weeks or so after the transplant. It's not too soon to start thinking about finding a living donor. You will hear about the advantages of a living donor from your nephrologist and the transplant center. That ask was one of the scariest things about the kidney adventure. I ended up with my pastor as a matching donor. You should investigate whether the transplant centers participate in a donor exchange program. Good luck.
University of Kansas has an excellent kidney transplant track record. I believe there's at least one other person on HU who is listed at that center. It wouldn't surprise me at all if people are flying there from far away places as well. It can take a couple of months to hear from transplant centers - some have boards that convene every month or two and will actually discuss a patient's medical profile and take votes to determine what his/her status should be. Time can move very slowly in these situations. A call to the coordinator there may get you some answers. I've occasionally posted two valuable sites that one can use to determine the standings or rankings of the various centers. I'll post them here again for anyone with an interest in checking them out. I've heard that insurance companies will only pay the expenses for one center per region and/or they must be in network, so check this out with your carrier. It may also be a policy set by hospitals sharing the same region. Perhaps your nephrologist can shed some light on this. My hubby was listed at two centers that just happened to be in different regions and he quickly discovered that double listing was his limit. While initial tests were shared (dental, colonoscopy, EKGs, etc.), the subsequent blood labs and visits demanded by each center were on different schedules. And the center further away also had additional cardiology requirements. My dear hubby was constantly running back-n-forth satisfying the demands while coping with dialysis appointments, work schedules, and more. As noted by DexterLab, a sure way to get a transplant is to find your own dedicated donor and, if possible, a donor willing to be involved in a donor exchange if incapable with you. Often, family members can be your "best" match. Truly hope you see your way forward soon! srtr.org/transplant-centers... and txmultilisting.com/wait.htm
I don't have much in the way of family around. My husband has to be close to home as we live on a farm in a rural area and someone has to take care of the animals. My daughter is coming from Idaho to be with me after the transplant (if and when). My brother is overweight and has an autoimmune disease as do I. My mom is 86 has high blood pressure and diabetes. All of her family is German and live in Germany. My dad died May 2020. My husbands family is not the healthiest bunch either. When I've actually been to orientation (not yet) then I'll put it out to the people I work with and maybe one of them. I have a pen for writing on the back window of my car and will do it too. And maybe the paper in the next town near up will do a write up. I won't do any of those until I know I can and will get listed at KU. It's possible they rejected me until I'm on dialysis and just haven't told me yet, or their wheels just spin slowly. In the meantime I have work trips scheduled and I have a vacation to visit my granddaughter booked. I'm not going to put my life on hold waiting for them to contact me to come for the first visit.
Okay so my neph has referred me to Barnes Jewish transplant hospital in St Louis. Whichever hospital sets up the orientation first is the one I’ll use. STRT has them both highly rated…KU is closer but neither is out of driving range. Both use MyChart and both are approved by Aetna.
I am in the Northern California region, covering Sacramento and San Francisco. I was told by my doc that I am only allowed to be listed in one hospital in a region at a time. I am not sure if that was due to insurance, or the regional transplant policy. If your organ is ready, which hospital gets called? I think that is the issue.
I was evaluated at one hospital, and then my doc recommended a different hospital to me, because they had a higher 5 year survival rate (organ survival), and they did significantly more transplants than the others. To use that hospital, I had to change insurance companies during open enrollment.
My nephrologist seemed to do some stuff behind the scenes before the transplant center called me. Perhaps it was because I only had a kidney function of 9% and my health was declining.
Not sure about here...the centers I'm interested in are two different states, one in KS and the other in MO. They also use different OPO's. The MO one, in St Louis I was referred to on Monday and they called me this morning and have sent me a questionnaire and a welcome letter. KU Med has done nothing of the sort, all I've had is two short phone calls and one I've had to initiate. Both centers are listed with Aetna as Institutes of Excellence so both "rate" the same there. The St. Louis one is the Barnes Jewish Hospital affiliated with Washington University and it highly rated. Both have great scores on STRT.org but Barnes actually does more transplants. KU is a 3 hour drive, Barnes is almost 5 hours so both are within driving distance. First one to get me oriented and started testing will who I work with and I'll let the other know to stop.
So this is getting weird. My neph sent the referral to Barnes Jewish Hospital on the 8th of August, they called me with some questions and sent me a 6 page questionnaire to fill out. The lady gave me her name and number and said she'd be my person to contact.
So back in early July I was referred to KU Med. Had a phone call with some basic questions. I called to ask status and was told it was being looked at. Then they called to ask about mammo and pap, had that one on the 28th of July and called them on the 29th to say they were done. Nothing more. I see in MyChart where a person is calling my primary (test results are there) but no notes, no call to me. I just had a call from my secondary insurance that KU Med had contacted them...I told her I have Aetna as primary and UMR second. KU Med knows that but sounds like something not being updated. Certainly no one has called me from there.
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