I’m back in the hospital after waking up two nights ago in a wet-lunged panic. I couldn’t catch my breath. Mike drove me to the E.R. and I got admitted. It was so much work to breathe, my ribs were aching, and I couldn’t think as clearly as usual. I’m getting dialysis to dry me out… and now I can breathe.
The big Thursday appointment I spoke of in my last post yielded no answers. I was hoping for option A, B, C… but it turns out it’s not that simple. What’s going on?
- A kidney biopsy is happening tomorrow. These can be a pretty big deal. Kidneys are sensitive and don’t like being poked. I’ll spend the night at the hospital afterwards and will be monitored just in case I need a blood transfusion or other attention. The biopsy will show what sort of damage there is to my kidneys and hopefully show a clear path towards reversing the damage.
- I’m in a holding pattern of retaining fluid and getting puffy in the ankles, face, heart, lungs (ugh… my least favorite), and getting dialysis to get the fluid off and clean the blood. The amount of fluid they’ve been taking off hasn’t been enough which has landed me back in the hospital for some extra dialysis. Part of keeping the water off is also a happy kidney diet: low fluids, low sodium, low potassium, low phosphorus, to be eaten along with my usual pile of pills at every meal. Yum!
- We just found out today that my heart function has taken a moderate hit– I’ve gone from 60% efficiency (normal) to 40%. This is most likely caused by the chemotherapy. It’s been well documented that one of the ingredients in vyxeos called daunorubicin can essentially make your heart worse at pumping. The heart doctors say there is a possibility it can be reversed, and doesn’t put me out of the running for a transplant… but it’s something else gone awry. This could also be contributing to my breathing troubles and to the fluid buildup. I have some fluid buildup around my heart as well that’s not helping.
- Will I make it to transplant?? At this point we just don’t know. I can’t get a transplant if my organs aren’t working.
Being around my wonderful kids has been a delight (and made me too busy to blog!). They are such interesting people… and interesting to figure out. One of my favorite things about being their mom is trying to figure out how to connect with them in their different stages. For James right now its through listening to him and asking him questions about the comics he makes, the shows he likes… For Liam it’s through his imagination- he’s thrilled when I wrap him in a blanket and pretend to make him into food of some kind. For David it’s through projects or puzzles or games. For Marian… well, she’s 2. She says NO, but then connects with snuggles and jumping and dancing in the kitchen.
- Peace for my kids, and that they would learn wonderful things during this experience.
- Joy and endurance for me and for Mike, and for our faithful family who keep showing up to help.