The New Normal.....

 We've settled in.  Dialysis three times weekly, with variably reliable taxi service courtesy of Medicaid.  Miscellaneous other appointments at an average of 3/week (including those for Curlygirl, who is still struggling with post-Covid craziness. 

There are still issues with severe anemia.  Babygirl's pre-rejection hemoglobin averaged in the 11's (12.5+ is normal, but close enough to be comfortable). Her post-rejection hemoglobin has yet to reach much over 6.5, and periodically drops to 5.8, which increases her fatigue, and makes her short of breath walking at a slow pace on any mild grade. 

They offered her a transfusion. She felt she didn't need one. 

I asked why? I mean, she never really refuses treatments, so....what?

Her answer was entirely sensible. And ENTIRELY off base.

"My hemoglobin A1c was 6.2 in the hospital, and that's lower than it's ever been.  Isn't 5.8 better?"

Hmmmmm.....

Hemoglobin (the stuff that caries oxygen to your vital organs and stuff) vs Hemoglobin A1c (a measurement of how much glucose is trapped inside your red blood cells, a measurement of your blood sugar average for the past 3 months)?  I frequently forget how much medical people know that lay people do NOT. Much confusion happens when we forget to translate the language of medicine to the language of, well, people. 

Once I explained the difference, and which of her symptoms were likely due to her anemia (and how hemoglobin is one of the ways we assess anemia), she opted in.  

Oddly, the dialysis center does not DO transfusions. I mean, they have a HUGE IV in her already, so why??

So, after a dialysis treatment, she had to switch hospitals and go to an infusion center for an additional 3 hours to get a unit of blood. She preferred that to doing it on one of her "days off."

In other news, the transplant team in Rochester wants her to meet up with the branch of the team that decides whether or not she qualifies to go back on the transplant list. Babygirl views that as Moving Forward, the next step.

I don't disagree. But it also means that the transplant team holds out no hope at all for the recovery of Jorge's kidney. I knew, that once she caught Covid, there was no way to save the kidney and her both at the same time.  But, now, I KNOW.  And it makes me sad. 

DeeDee