Let's Suppress the Immune System!........

Every once in a while nearly everybody has one of those, "I really didn't think this through too well..." moments.  Like when my brother, holding a bag of frozen peas at the top, used a letter opener to cut the bag.  Completely across.  We had to pick a new veggie for dinner, and I was finding peas in corners for weeks.

Some parts of kidney transplantation feel a bit like this.  The good news is, we have a working kidney!  The bad news is, we have to make her body not notice that it's new! While she was in ICU they gave her medication to a wipe out a large percentage of her infection-fighting white blood cells, and  now we are suppressing the rest of her immune system with three really toxic drugs, all to make the new kidney "invisible." 

For the kidney this is a great idea.  If we fail to do this, her body will recognize that this is not her original kidney, and do it's darnedest to kill it quickly.  For the kid, this is NOT a great idea.  If her immune system can overlook two pounds of fresh kidney, it's also likely to overlook a few small viruses, some bacteria, and a fungus or two. If it does, she gets sick.  Really, really sick. Maybe deathly sick.

For the time being we are avoiding exposure to new germs.  We don't go shopping, won't go to the library, turned down an offer (difficult as you can imagine it was!) to tour the Three Stooges Museum.  A trip to the local pharmacy for lip balm (after all, she can't share MINE anymore!) required extra layers for warmth and a face mask.  We timed the trip for ten AM Sunday to avoid crowds, and succeeded.  I am teaching Babygirl to spell all her meds, and to learn what each of the nine medications are for.  Eventually she will learn the doses as well, but since the doctors are still adjusting doses, I'm waiting on that.

The hardest part of all of this is not teaching Babygirl to be careful.  It's not teaching her about her medications.  It's educating everybody around her!  Her school wants to do her "home teaching" AT THE SCHOOL, or at the local library.  Seriously?  We have had several kind invitations to go out for dinner.  Um, thanks, no can do.  It's a bit difficult to wear a mask and eat at the same time.

This is one of those things that I am discovering is a lay person-versus-medical person thing.  Like the "Are BOTH of her kidneys failing?" question (yes, of course, you only need one functioning kidney and she has neither), the "Can you take your immunosuppressed kid out to dinner?" question seems to have an obvious answer to ME that is clearly not obvious to everybody else.

Three of her new medications are for infection prevention.  But there is no way that only three medications can prevent thousands of infectious diseases.  Her vaccinations help.  Her innate good health is certainly beneficial.  But the single best thing we can do for her is to keep her away from any NEW germs.  And for that, we mostly stay home. 

So stop by, if you are healthy.  Use the hand sanitizer by the door. Bring a meal? Thanks, but check with us about what's okay to eat THIS week, since it has totally changed since LAST week! And leave the little kids home. They are adorable germ incubators on feet.

DeeDee