So Here's the Scoop

Okay, so... many of you have been trying to figure out what in the heck happened to me.  I am too, actually.  I've been diagnosed with Granulomatosis with Polyangiitis.  When I look it up and read the early warning signs, I can recognize many things I've been dealing with, most notably, a sinus infection that just wouldn't go away.

Anyway, the GPA, for short, can destroy normal body tissues and affects the blood vessels so that blood supply can get cut off to different organs, like the kidneys.  That's why my kidneys just stopped working.

So for the foreseeable future, I'll be on dialysis, 3 times a week.  I go to Tucson on Tuesday to get a different dialysis catheter put in, one that will be located below my collar bone, rather than sticking out of my neck.

We can fight the GPA with steroids, but right now I have some pre-ulcer lesions in my stomach that need to be healed, or the steroids will tear them open.  So hopefully within 2 weeks, I'll be able to start the steroids. Kidney function could eventually come back.  For some people it does, some it doesn't.  At this point I'm not going to count on it, and if it does, it'll be a nice surprise.

I also have to follow a renal diet, which mainly focuses on low potassium and phosphorus.  It means giving up (or having in VERY limited amounts) some of my favorite things... most cheeses, any tomato products, potatoes, and yes, chocolate. Makes me sad to think of no pizza or spaghetti. 😢

I also have to be careful of how much I drink.  I'm on a 1500 ml water restriction, and that includes any foods that are mostly water, like applesauce or sherbet.  1500 ml doesn't sound so bad till you try to stretch it out over 24 hours.

So that's about as much as I know.  A lot of it is a big bummer, but there are so many positives.  I had a whole medical staff digging and researching and "House"-ing me until they could figure this out.  We've got a plan of action to start fighting this.  I've got a wonderful husband who has barely blinked at what all has been thrown at him, and family that has been keeping up with everything every step of the way, and all my friends sending good wishes.

For now, we are sticking in the Tombstone area until we get a handle on how life is going to be.  We like the doctors here, and the clinic where I'll go for dialysis is staffed by the same people I saw at the hospital.  In fact, it is one of the dialysis clinicians who pulled some strings to get me such a quick appointment to get the new catheter in.  Familiarity is good right now.

Walking is good for me, as the kidney problems cause lots of water retention, and right now my legs and feet are fat little piggies.  Last week it was my hands.  The walking helps, and the dialysis gets rid of a lot of extra fluids each time.  I get pretty tired pretty quickly right now, but that will improve.

Okay, that's about it.  I'm still learning.  I think we've got a handle on things right now.

We're having to learn some new rubs and marinades for things we like to grill... luckily protein is a big thing for me to have.  We're trying out a mustard-based marinade on the chicken tonight.