Multiple State Listings - Questions

[Erin8607]

I'm reading that several of you are listed in multiple areas/states on different transplant lists, how do you do that? Do you physically drive to these areas and go through the weeks of appointments and evaluations? Do you get apartments near the hospitals and just stay in the area? Have family there?

I'm very curious about this as I am in a pretty desperate situation to find a kidney. I am only listed in my area and my wait is still estimated to be another 6-7 years. I've been told it is much shorter in other areas, even other states.

I don't know who to talk to about this or how to even start going about trying to go to other places to get listed.

Any suggestions on where to start? For those who may  not have seen a different thread, my docs are estimating I only have about 2 years left to go on dialysis if I keep losing accesses at the rate I have been for the last three years. I'm 27 and terrified, not ready to go and trying not to give up the fight. Just having a REALLY hard time finding anybody to direct me where to go and what to do.

Moved To Transplant Stories - Rerun Guest Moderator

[Rerun]

I was never multipul listed, but I think you have to have an eval at each place.

[okarol]

You can apply to hospitals outside your procurement area. Pick one or two that you can get to in a reasonable amount of time. We chose one that was a 2 hour drive and another that was a 2 hour flight. Since Jenna was already listed it was much easier. We spent one whole day at each one for the evaluation and she was listed in less than a week (after all their tests came back.) Bring everything with you that you can to make it progress smoothly. Bring your most recent lab slip, a list of your medications and dosages, a list showing your nephrologist, your dialysis center and contact person, your current transplant team info, your insurance and medicare information and your SS#  -- if you print this all out you can hand it off to the nephrology surgeon, the psychologist, the financial coordinator, the transplant coordinator, and anyone else who needs to know.

Let me know if you need more help.

[cariad]

Hey Erin,

Karol has the info you need, as usual. I see that you are in Ohio, so you can get out of state easily. I would not bother with any other hospitals in the state, since the wait times should be approximately the same in each region within your state. It is difficult to find wait list times since it depends on quite a few factors, but I know Universiy of Wisconsin Madison has a relatively short wait time - 3-5 years for type O (the longest wait) is what the doctors told me. I also saw University of Mississippi saying on their site that they have one of the shortest wait times in the country.

I would call. Since you are already listed, it should be easy, but you will need to show them that you can afford the extra travel costs. If you have insurance other than Medicare, you need to call them as soon as you know where you want to go to get your approvals. This can be excruciatingly slow, depending on the company.

Good luck! Keep us updated on your progress.

[Erin8607]

I fly to California twice a year, travel is no big deal to me.

I have several friends littered across the country from doing rescue work over the years, have had offers to crash at some folks places if need be. I will look into a few places and see where I can get through.

Thanks for the tip on not bothering with other hospitals in state, I wondered. I knew that the list was regional, but wasn't sure if I should bother with OSU.

[okarol]

I don't know about Ohio, but here in California the wait time was dramatically lower in San Diego than Los Angeles, whereas the wait in San Francisco was as long or longer than LA. You really need to call and see what you can learn, you may be surprised.

Here are the procurement areas for Ohio:

OHLB - LifeBanc     Cleveland, OH     (216) 752-5433     
OHLC - Life Connection of Ohio    Maumee, OH    (419) 893-4891
OHLP - Lifeline of Ohio    Columbus, OH    (614) 291-5667
OHOV - LifeCenter Organ Donor Network    Cincinnati, OH    (513) 558-5555    

This info is from: http://www.unos.org/whoWeAre/OPOs.asp

[paris]

I would definitely check all the Ohio transplant centers first.  I am in North Carolina and listed at two centers in the state. One 30 miles away and the other 3 hours.  But, the local one has a 5-6 year wait list and the one in Charlotte has a 2-3 year wait list.  They do three times the amount of transplants a year than the local center, so their wait time is shorter.    It seems like Cleveland Clinic, Ohio State and the one in Cincinnati would be in different procurement areas.   I went online to the centers websites and found phone numbers and names and just started making calls.   They don't tell you this when you are going through the listing process.   Good luck!  I am from Ohio and all our family is still there.  Need a place to stay in Columbus?  Let me know -- seriously! 

[cariad]

Oh, certainly I could be wrong about differences in wait times between regions in the same state. There are many variables, so I do not think these times are constant from one year to the next. I know that Madison lost their referrals from their largest private insurance contract (I hope I described that correctly) and I have to think that affected their wait-time. Please do call to be sure, Erin.

Karol, it is interesting that San Diego told you that their wait-time was much shorter. I could swear they told me the opposite in 2007, but perhaps I am remembering it wrong. I know they really were not too psyched to hear from me when they found out I was already listed in LA, and in the end, I decided not to bother with them. Living in Wis, I am constantly badgered by local doctors about why I am going to Illinois, because the Wis wait-times are so famously short. The answer is pretty obvious - I have a live-donor and wait-times are meaningless to me at present.

[okarol]

cariad - where did you try in San Diego? We actually ended up at Scripps Green in La Jolla and they were great. Jenna was listed there in 2006. They were so nice to her, and so efficient, that she switched her primary wait time from USC (which was 20 minutes from our home) to Scripps. The wait was an average of 2 - 3 years and they explained that much of their patient population was elderly, and they were more inclined to take extended-criteria kidneys rather than wait, which gave them a chance to be transplanted earlier. They were also very open to looking at strangers as donors, whereas USC and UCLA said no way.

[cariad]

cariad - where did you try in San Diego? We actually ended up at Scripps Green in La Jolla and they were great. Jenna was listed there in 2006. They were so nice to her, and so efficient, that she switched her primary wait time from USC (which was 20 minutes from our home) to Scripps. The wait was an average of 2 - 3 years and they explained that much of their patient population was elderly, and they were more inclined to take extended-criteria kidneys rather than wait, which gave them a chance to be transplanted earlier. They were also very open to looking at strangers as donors, whereas USC and UCLA said no way.

I talked to UCSD. They scheduled an eval but told me there was really no point if I wanted to stay listed in LA, too, so I ended up canceling. Wow, from your explanation, it sounds like hospitals in the same procurement area could have different wait times. I never even considered that possibility, but I guess a large difference in populations could make that possible.

I hated, hated, hated USC, and UCLA struck me as incredibly arrogant. The messages UCLA used to send me were full of demands with absolutely no compassion to them, and getting hold of them was nearly impossible. When they wanted me to attend a FOUR HOUR info session as part of my eval, I told them either drop the requirement or I'm not going there, and needless to say, they were not making any exceptions for me. Cedars were so welcoming and easygoing and such a relief after those two.

The USC surgeon at my eval was actually from Iran where they legally buy and sell organs, and he was saying how much easier things are in Iran, because if something goes wrong with a transplant, it doesn't matter, you just buy another one, but "in America, everything has to be perfect". Hmmm. As much as I liked the man as a person, this was a creepy statement to have come out of a doctor's mouth. I sat thinking "Did he just say it doesn't matter if a transplant fails? Flipping heck. Let's put him through a few major surgeries and see if he doesn't feel otherwise." He also told me I was wasting my time trying to get any investigational procedures in SoCal, saying that “There are 11 hospitals in Southern California and I have worked at all of them. We do bread and butter transplants here, no exotics.” From what I could gather, he was right. Oh, and he applied red-hot pressure to use a live donor, “warning” me that if I wanted to use the list, he was going to reject any less-than-ideal matches for me due to my age and health status.

Sorry, back to the topic. Erin, this reminds me that you may want to discuss extended criteria donors since it will get you a transplant faster and it seems that your circumstances are pretty dire. You are so young, the hospital may say not to do it, but in your situation, I would explore every option. I think it is mandatory that they discuss it with every patient now, and I had to sign off on my decision to not accept those organs (I can always change my mind – I asked to be sure.) Good luck, and please start making those phone calls to hospitals and asking some questions. And keep us updated on your progress! Good luck!

[willowtreewren]

Waits at different hospitals within a procurement area are quite different. About 2 1/2 hours from us there is a hospital that does ONLY kidney transplants and their wait is about half as long as the hospital where we are listed. I am trying to talk Carl into switching, but he wants to stay close to home. They will not release post op care to the closer hospital, so that is an issue for us.

Sigh.

Aleta

[Jie]

Go to UNOS web sites to study the waiting time, number of transplants, number of patients on the list, number of patients get into the list during the recent years for your blood type, and survival rate data. Then choose centers for evaluation. Each area has the same list for all centers inside the area, so only one center in each area. After the first evaluation, the second and later evaluation is easy and quick (the time is getting the information and scheduling appointments.