Thursday, June 23, 2016

The little we know for now

I didn't have enough new information to even post an update yesterday. I only have a bit more to offer today.

Yesterday they scoped her top and bottom and didn't find a thing. Other than the pain she experienced of the colonoscopy could maybe indicate some IBS. We've suspected something IBS or Gastroparesis for a long time but it's certainly not to blame for this sudden decline.

The Nephrologist and her PCP both think her transplanted kidney could be causing her issues. Except that most of the time when that happens the patient has a lot of pain around the kidney site and she doesn't have any. They think maybe the immunosuppressants she's on have made it impossible for her body to launch a proper response to the kidney going bad. The surgeon isn't ready to say he'll take it out and it will be next week before he makes that decision. There is always risk with any surgery and that's really the only downside to removing the kidney - if it doesn't work, it will have been unnecessary surgery. I'm a bit disappointed they are going to wait some more. The Nephrologist said if it IS the kidney going bad, then she'd feel better by the day after surgery.

Late last night they got the first lab work that came back abnormal. It was her TSH (thyroid) and cortisol levels. With both of them registering almost zero, they are now testing and evaluating all of her adrenal functions. If all of the adrenal functions are "off" then it could be her pituitary gland, which is the master controller of all of the adrenal glands. We were concerned upon hearing this as the pituitary gland usually only malfunctions due to an inoperable brain tumor. However, they think it's more likely also the immunosuppressants keeping her pituitary gland from working well.

So they are doing more investigative blood work and also some test in the morning where they test her blood, give her an injection of something, test her blood again in 30 mins, inject, 30 mins, inject, 30 mins. That will measure if they are able to artificially stimulate the glands.

I asked if these 2 things were related - the kidney maybe going bad and the glands not functioning right. I was told "no". They are separate issues. It still seems to me that they both point to the immunosuppressants, though. But what do I know?

The local Catholic priest came today and visited with us and prayed with us for what seemed like a long time. That was comforting and nice.

The only improvement for Maria is that they have found a perfect cocktail to manage her nausea better. She actually ate a little bit of all 3 meals today and that hasn't happened for weeks!

Please pray for guidance to all of the specialties involved with making care decisions for Maria. And pray that the tests tomorrow aren't miserable for her.

The support and love we get is truly humbling and we appreciate all of you so much!

These two sure had a love fest getting to see each other tonight. It's going to be a long road ahead without having Mama Mo at home.

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