I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: pinkyD on May 22, 2018, 04:29:36 AM
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I got 2 calls to be an alternate this month. The first call 2 weeks ago caught me in the middle of a bad cold, so they turned me away. The other call just came tonight and after my coordinator went through all the pertinent info, I decided to decline. It was a 'high risk' kidney with a KDPI of 35. My first and only other call came ~2 years ago. The kidney was apparently excellent with a KDPI <20. The coordinator at the time didn't even give me a chance to accept or decline. She just told me I was the alternate and to fast until they called back. So, I'm holding out for a lower KDPI kidney. I feel it's right around the corner!
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, I decided to decline. It was a 'high risk' kidney with a KDPI of 35.
'High risk" really means something like 1 in 2000. If you get hep C, they can cure it (but you won't because they test for it). Nucleic acid testing allows detection of HIV well before seroconversion, generally within just a few days of exposure. I would be more concerned about the KDPI than high risk status.
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That's good news. I think Simon Dog's advice is good, but overall I'm glad you feel comfortable making the choice on which kidney to accept. I hope you get a good kidney soon, yet I do suggest to be ready to wait longer than you think it will take just incase.
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Oh yeah, I'm not too concerned about the 'high risk' designation. I'm hoping for a lower KDPI score since I know it is possible to receive one.
I do suggest to be ready to wait longer than you think it will take just incase.
I'll try not to get my hopes up too much yet. I've read through your posts documenting all the calls you've received until finally getting transplated (great read btw!) so I am prepared for a long wait too. Just hope it's not too long!
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It confuses me how long some have to wait. I thought literally if you get called it means you are very close. Some people have been on the list for 5 or 6 years counting the calculated time meaning if you weren't on the list but were on dialysis and still have not gotten a call. Makes me think my transplant could be coming soon.
Sp mod Cas
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I felt like INOVA might be very aggressive about calling alternates where GW was less so (but then I joined GW a few months before my final call came). It made me wonder if INOVA with a much more established program have many more people on the list - those people might be on the list longer and have more complications and thus they need to call more alternates because they might find their patients have a higher turn down rate because of other medical issues? Versus GW was a new program and they might know better the status of their wait list and thus only make more serious alternative calls?
Or maybe INOVA just wanted to string me along so that I didn't get listed in another zone nearby - realistically I could have listed in 3 zones if I wanted to - my current zone, John Hopkins in Baltimore, and one of the transplant hospitals in Charlottesville or Richmond.
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It confuses me how long some have to wait. I thought literally of you get called it means you are very close. Some people have been on the lost for 5 or 6 years counting the calculated time meaning of you weren't on the list but were on dialysis and still have not gotten a call. Makes me think my trabsplant sont ve coming soon
It's not just time on the list - there are a lot of factors.
For instance, I was highly sensitized and needed close to an 100% match. When one came available, it was flown from the West Coast to Albany, NY, and then driven to Vermont.
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I'm on the same boat. I am also sensitized. About 97 percent antibodies. I guess they want a perfect match which is why it's taking a bit. I got a call friday night but I was number 4 stand by.