The biopsy procedure itself seemed to go better than the last one. Maria didn't have much pain. She asked for medicine in advance so didn't suffer the usual nausea.
I left her Tuesday early evening with plans to come back for her the next day.
Wednesday morning she called and left me a pitiful voice message about how much pain she'd been in from cramping almost ever since I'd left the evening prior. And let me tell you - Maria is no wimp about pain but this had her curled in to the fetal position and completely miserable, which is how I found her late morning when I arrived. The doc had been there already and was saying maybe she had C-Dif and they were testing for that. Maria thought maybe her gastroparesis was rearing its ugly head. But as I started talking to the many nurses we have known so long and asking if this could be related at all to the biopsy, they were all of the opinion this could be a hematoma. Maria's assigned nurse just gave her some pills to treat the symptoms and Maria pretty much passed out after that. When I left her that afternoon for a doc appointment of my own, I didn't even wake her up knowing how often she'd be awakened anyway and that she needed rest from her awful night.
Being away from her the rest of the day yesterday my frustrations only grew. Why does modern medicine seem to just throw pills at symptoms and not treat root causes? Maria's main nephrologist who sees her at the hospital is in San Francisco for some huge international transplant convention. Why can't things get done in his absence? What is the problem with making decisions here and taking action? If the biopsy results are back what else are they waiting for to determine if there should be more treatments?
After a demanding work day, a frustrating day of Maria's medical stuff, and then I got an uber cranky little boy in full meltdown mode handed off to me around 6, I was just done for the day. We were in jammies and in bed by 6:30 PM last night and even then it was another 90 minutes of fussing and screaming before we both got to sleep.
But, today's a new day! We were up early and after taking care of some work stuff, I thought I had an early enough start to get to the hospital and see the doctor but I missed him. There was at least some news and a little progress.
The biopsy shows improvement over the one from a little more than 2 weeks prior but it still shows cellular rejection and her antibodies are still too high, though improved. They do want to do more treatments and they actually started more thymo last night. What I didn't fully realize and learned today is that the plasmapheresis takes the thymo out of her blood so they have to be careful about when they do that. And, the antibodies can have more opportunity to attack the kidney as a result of the thymo. So, being in both forms of rejection is really pretty tough given that the therapies for each combat each other. Ugh!
This afternoon the doctor called her and here's the plan for now: No more thymo after last night. Plasmapheresis tonight and Monday, which pairs with the cancer drugs, too. She has a clinic (kidney transplant clinic) visit for Monday. I just pray that her normal Doc is back from CA and sees her on Monday to make sure all of these decisions are solid!
So far they aren't talking about another biopsy, though I would think another is in her future...?
We appreciate your continued prayers, thoughts, and support!
And here's the picture worth a thousand words as to what the stress of a sick mama and the hard work of going to Conductive Ed 5 days a week has on a 3 year old!
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