Working on diet changes

I had tried to schedule another appointment at radiology for this week since it seemed like Becky was going to need fluid drained again, but the doctor’s orders only allowed a scheduled visit every two weeks. So, we spent 9 hours in the ER on Monday to get another 6.8 liters drained (by the very same techs/nurses that do her regular appointments). Paperwork. Ugh. Doctor’s orders have been updated since then to allow weekly visits.

By Tuesday we had some updated info based on the most recent blood work. Her kidneys have not yet recovered enough to restart diuretics. More blood work scheduled for next week to check again. That means we have to keep managing the build-up of fluid by limiting liquid and salt intake - both of which are difficult for her. We also got an updated MELD score of 12 - up from the original 7 (in a range of 6 to 40). It has to get up to 20 to even get on the transplant list as the lowest priority.

We had some conversations about diet and the fact that we can’t count on a transplant as being a silver bullet. We just don't know enough yet. I'm not sure if the fact that she has allergic reactions to so many antibiotics and painkillers will be a factor. However, it seems like unless something very dramatic happens we won’t even be starting to ask those questions until our December appointment. And even if a transplant is in the future, we could easily still be a year away from that.

In the meantime, Becky has committed to trying harder to make more drastic changes to her diet. We’re going to try to plan some meals tomorrow and give her options for breakfast/lunch. We’ll also try to come up with some dinner meals we can grill or make easily after I get home. The kids have offered to cook meals once or twice a week so we'll try to come up with meals that she would be willing to try. That’s our homework for today - meal planning.

We’ll primarily be focusing on cutting liquid and salt intake while increasing protein for now.