Week Thirty-three - Mixed News From the Dialysis Team......

We spent yesterday morning traveling to and from our monthly meeting with the team.  And the "team" designation is really not an exaggeration.  Nurse, nurse practitioner, dietician, social worker all see us each and every time we go.  Every three months we have to collect a twenty-four hour urine specimen (yeah, I agree) and a sample of dialysis fluid to take along, and this was THAT month.  They drew blood (each visit) and informed us that somewhere between last summer and last month, Babygirl managed to lose her immunity to Hepatitis B. There is no real way to explain why.

Well, that just stinks. It turns out that they screen all donors for hepatitis B antigen (the actual virus, indicating active infection) and antibodies (indicating immunity).  If the donor is antigen positive, they are crossed off the donor list no matter what because they will certainly transmit that virus to the recipient.  Since the recipient will be deliberately immunosuppressed after the surgery, that is an unacceptable risk. But if the test positive for the antibody only, it means that either they were vaccinated and it "took", or that they had the disease, got over it and are immune.  But there is an ominous third possibility - that the donor has so little virus left in their blood that we can't detect it and partial immunity, in which case the virus could still be transmitted to a recipient who is not immune.  Therefore they won't give an antibody positive kidney to an antibody negative recipient.  And since nearly everybody under the age of twenty-five has been vaccinated, that eliminates a LOT of donors. 

So.  Babygirl rolled up her sleeve and got a quadruple dose of Hepatitis B vaccine divided into two shots (her choice to divide the large fluid volume).  And she'll get it again next time we go, and again in six months. And the only complaint she's made about that is that the bandaids all itched. Really? Three pokes and that's it?  I am, as I frequently am, humbled by her.

On the good news side, she is growing again.  Her appetite suddenly went out of control a couple of weeks ago and she has put on two pounds and grown half an inch.  It's not much compared to last year, but we'll take it! Her last labs were all okay, and we're hoping that this batch is okay too.

One of the things I noticed while waiting for our next appointment info was another child's urine collection container.  Babygirl's had nearly two liters.  The other had barely a tenth of that.  We are so blest that she continues to get rid of water and potassium on her own - this would be unbelievably more challenging if she didn't, which is, frankly, frightening to imagine.

DeeDee