KidneyQuest 2018

I haven’t updated since November mostly because there has been little to tell.

Mike has been jumping all sorts of hoops for OSU, and is still not listed there. Some questions have arisen from old and otherwise-ruled-out diagnoses made on the road to the kidney failure diagnosis. OSU is significantly more meticulous about ruling those out for themselves than UC has been. So into this new year, Mike will continue to try getting on the list. He has another appointment and even.more.bloodwork (enough, already) on Friday the 12th.

We DID just find out that potential donors at OSU – once they have made certain cuts – are required to spend a long day in Columbus for assessment. this includes a CTC, meetings with surgeons, other docs, nurses, social worker, etc. It also includes education on the surgery itself and post-op information. In part, it is for the docs to “lay eyes on” the donor and be sure they look to be in good health, etc. Mostly, it is for the potential donor’s benefit, to educate and answer all their questions.
It may be the thing that keeps us from finding a live donor. There are many of our friends who live around the country who cannot manage a day or two in Ohio beyond the surgery time, and we completely understand. UC had told us all of this could be done elsewhere. OSU insists on it being done there. And since OSU is #35 in the top 100 kidney transplant centers in the US, and UC didn’t make the list, I’m guessing OSU is going to keep donors’ needs at the forefront, even if this is a road block for most.

We do know of a couple people who have jumped through the weekend-long urine sampling and overnight blood pressure tests for OSU. Whether they make it further or not, these are HEROIC measures to take for a friend. You are written in our hearts.

UC – despite their insistence that they’d get us connected to the network and follow up with potential donors etc – has not returned any phone calls. We were so hopeful after being reassured that they had new staffing and a new outlook. The proof is not there. Mike goes back Tuesday for a regular “on site” visit.

OH, and we also found out that Mike has extra antibodies he shouldn’t have, making him harder to match. Normally these antibodies show up in people who have had a transplant or transfusion, or have been pregnant. None apply. So – it’s just another “glitch” along the way.

SO. 2018. We still need a kidney for Mike. We still need help asking for one. We still need your love, support, and prayers. We still need notes and jokes and cards and phone calls and texts because- you all – this is rough.

We still. need. hope.

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