Tuesday, June 30, 2015

"When Do You Not Have to Worry?".....

A few months ago a church friend asked me, "So when do you not have to worry about rejection anymore?"

I told him the stark truth:  "When this kidney dies and she goes back on dialysis.  Then she goes on the transplant list again, and if we're lucky she gets another kidney and we get to start worrying again."

He was stunned, as are most people.  "Transplant" and "Happily Ever After" are not the same thing.

That being said:  We went to Philly for rechecks at nephrology, neurology and gynecology Monday and Tuesday (a massive accomplishment, getting all three in a two-day spread!). 

Gynecology is easy:  Cramps?  Nope.  Good - carry on, no changes, see you next year.

Neurology was a mixed bag:  Yes, we should increase her medication a little more, but we need to clear it with nephrology because it is causing some kidney side effects (increased acid), so we'll get in touch with them and then get in touch with you.  Make an appointment for three months.  (Well, except that if history is any predictor, they'll forget to ask and forget to call; and I've already checked and there are no appointments available on the one day Babygirl doesn't have school near the three month mark unless I speak to the special scheduler, and gee, she wasn't available.  Sadly, it's CHOP Neurology in a nutshell.)

Nephrology was just tough:  Creatinine is 1.3, up again after coming down briefly.  Calcium is up for no good reason (and believe me, there is NEVER a good reason).  Too much acid (neurology's fault, and fixable, increase the bicarbonate).  Neutrophil count abnormally (but not quite critically) low. There will be a team meeting to discuss what to do next. Increasing the mycophenolate is an option that has been being discussed for a long time, but concerns about her neutrophils have been the opposite side of that coin, so it's anybody's guess what's next. The word 'biopsy' came out, but they JUST did one, so I'm not sure what the point of that would be.  They agreed that increasing her neurology medication is not a problem and will call and tell neurology, so I can call and bug them later.

So since the appointments were spread over two days, and the first day ended at noon, we got in the car and drove east for an hour until we ran out of land.  Babygirl has never seen Atlantic City, and since we go to Bethany Beach (I think they have about the world's smallest boardwalk LOL) she's never really seen a Big Boardwalk town.  We walked about three miles of boardwalk, about three miles of sand, visited Ripley's Believe it or Not Museum (hokey but fun, and better than taking a 15 year old into the casinos!) and had dinner on the beach.  It was a nice break for the two of us, even if the news wasn't the greatest.


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