I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Kathymac2 on September 23, 2016, 03:10:57 PM
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I live in Southern California and my health insurance plan will allow me to double list at a transplant center in Southern California but not in the same jurisdiction as my current center. I have been on the wait list at UCLA for four years. During a recent visit to UCLA I was told the wait list for my blood type is now 8 years (up from 5-6 years when I first listed). I am considering double listing at either Scripps or UC San Diego which apparently have shorter wait times. How much shorter seems to be up for debate.
Has anyone wait-listed at more than one facility? Was it worthwhile to double list in your opinion? I can see the upside, but what are the biggest negatives with double listing?
Kathy
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Cost (various deductibles); time and travel.
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My daughter is listed at UCLA and Scripps. She is also is paired donation programs - 2 at Scripps and 1 at UCLA. She has been waiting 4 years.
She has 100% antibodies so she gets 200 additional points, and still there have been no hits from the national deceased donor list. So we wait.
Do you have any non-matching donors? Swaps are making a huge difference.
I would explore Sharps and UCSD in San Diego area. If you're able, you may want to list in Tucson or Phoenix. Shorter wait time and not too far to get to.
Good luck. If you want any help you can email me at kidney4jenna @ gmail.com
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I've made the choice to not double list at this point. It might not be the best choice and I reserve the right to change my mind. I live in the Washington DC area so I could also list in another zone at John Hopkins in Baltimore which should have a shorter wait time. That's about an hour away in the dead of night, with the regular traffic it's a bit more.
I choose not to list there because of the burden on me and my wife should I get a transplant. Say I'm in the hospital for one month it would be very hard on my wife to commute up or she would need to get an extended stay hotel room or something and then who watches the cats. Then I'd be commuting up for followup visits and the like. My life will get back to normal much quicker if I'm transplanted closer to home.
That being said if dialysis became harder or if I was difficult to match I would get list d up there.
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Simon Dog - since I am retired, time is not a big concern for me. Cost is a consideration, but not a major stumbling block. Travel becomes a slight problem because my husband is visually impaired and cannot drive - I am the "designated driver". I think we could probably work through all of these issues if we had to, but transportation would be the biggest issue after surgery until I am cleared to drive.
Iolaire - my thinking seems to parallel yours. Up to now I have been fairly confident that I could outlast the wait time at UCLA. Now, with the reality of starting dialysis looming, I'm concerned about how four years on dialysis before being considered for a transplant would affect my health (at my age).
Okarol - I read your daughter's story with interest. You are a wonderful advocate. I sincerely hope that your daughter and other young people like her receive a kidney soon so they can get on with their lives as young people should.
My brother and sister both tested and didn't qualify to donate due to health problems. Friends in my age group have health problems of their own (you should hear the whining when we get together ha, ha).
My health insurance will only pay for a referral to either the Riverside/San Bernardino area or San Diego, so Tucson and Phoenix are not currently options.
I appreciate all of the replies to my question. It helps me to think through what might be realistic options in my situation. I think I will probably stay with UCLA for now until I get established on PD. Then, depending on how I do I will make the decision to either continue the wait at UCLA or try to get double-listed at Scripps.
Kathy