Thursday, June 30, 2016

Maria is home, rehab didn't get approved - another diagnosis got added

Maria came home from the hospital yesterday. Yes, home - no rehab. In the end, we didn't get it approved by insurance. Just pray she doesn't fall and that I can keep up with everyone around here! The consolation prize to no rehab was getting sent home with a walker - because, you know, we need more medical equipment around here!

On Tuesday afternoon they added yet another diagnosis to her already long list. She has Addison's disease. By itself, it's very manageable - like the Graves Disease she was also diagnosed with in the past week. It's just making her that much more medically complex. Both of these together mean she also has Autoimmune Polyglandular Syndrome. They add this to the chart since these autoimmune diseases are pretty rare but since she has 2 of them, they need to be on alert if any others surface. Her kidney disease is also autoimmune - IGA Nephropathy. Her body has not been good to itself all in all. :( But I did already know my girl was rare. :)

They printed out the side effects on her medications at discharge - we had to hire a crane to get it down from the 5th floor.

Apologies to those I ran in to or conversed with Tuesday afternoon and evening. I was overwhelmed by yet another "disease" and worried sick about the implications. It just seems more and more of Maria's poor body gets involved in long term problems. Kidneys, pancreas, parathyroid, heart, thyroid, and now glandular systems.

The "good" news is that the new diagnoses don't eliminate her from eligibility for a kidney transplant. We have to find a way to get there. Her quality of life has eroded horribly in this past year and we really need some light at the end of this dark, crappy tunnel.

For those who don't already know - they have put up some large hurdles we have to get over before they'll even let us be considered for a transplant. We are working through those and are actually finally getting a little closer, though it will still likely be many more months before she gets referred and then several more months after referral before a surgery would happen.

We are looking forward to a 3 day holiday weekend ahead and hoping to catch our collective breath. Wishing all of you a safe and joyful holiday!

Once we picked Maria up from the hospital yesterday, Gus just kept repeating, "I'm so happy to have you back, Mama! Mama Christi, aren't we SO HAPPY to have Mama here?" No more FaceTime - we get the real live deal!

1 comment:

  1. Thinking healing thoughts to Maria, have a safe and happy 4th of July weekend.