Yesterday was PD Clinic Day. Once a month Keith goes to the dialysis center and meets with his dialysis team. In a future post I’ll talk about more about the team, and why I like this approach, but for now what you need to know is that we meet with dialysis nurses, a nutritionist, a social worker and a doctor once a month. We go over everything from Keith’s blood work and general health to the needs of our family (I’m sure it would shock no one to know that this often seems to be where we spend the bulk of our appointment).
On Tuesday I answered the popular question about Keith and the transplant list. I mentioned that he seemed to be stabilizing finally. Let’s just say we weren’t as close to stable as we thought. They had a problem with one of the machines in the lab so we didn’t know that one of his numbers had dropped pretty significantly. They didn’t call because they were willing to wait until this appointment to see what happened.
Nothing good happened. The number that drop is a big part of determining if the dialysis is working right. There are reasons it could drop one month and come back up, not many, but with the fine line we’ve walked with Keith between it working and him getting really sick from it no one is inclined to make any snap decisions and change things right away. So, two months in a row means that there is a problem and we need to make some changes.
What does that mean? Without getting too far down that rabbit hole and into specifics of his medical status (which I am not inclined to do), we have to once again change the amount and timing of the dialysis solution. We had been doing two “exchanges” a day and now we’re up to three. Not a huge deal. Nothing crazy, just a change in the program. They also added a med to help with some other numbers that have been creeping up and we haven’t gotten to come down with diet changes.
He also got an iron infusion while he was there. Again, not something unusual for a PD patient. One of the things we’ve learned from our friends at the clinic is that PD patients have a tendency to be low on iron and a few other things. They also need lots of protein. They don’t need a lot of processed food – a challenge for us because processed food is Keith’s favorite food group. The challenge of feeding him is probably going to be a post at some point because there’s a lot to think about. But it boils down to my making meals from basically from scratch with fresh ingredients, as long as we can afford them.
A side note: We get a lot of information and suggestions on food banks and the like that could help us. But, most of the long shelf life foods that you get from the food bank are basically outside of his recommended diet. Can we occasionally have pasta, sure – as long as there’s fresh meat too. Boxed or canned anything is usually high in the stuff he’s not supposed to have so we only keep a limited quantity on hand for emergencies. It can’t be a big part of our daily diet.
On the bright side, they all commented about how much better Keith is looking and sounding. We went through a long period where he was almost passing out or puking every time he stood up, and he wasn’t able to keep up a conversation. The good news is that he’s joking and picking on the team now (those of you who know Keith know that is a blessing and a curse). They’re thrilled. The team is also a lot of fun and give all the teasing back just as bad as they get.
That teasing and joking is probably one of the best parts of Clinic Day. Going to the clinic is nerve-wracking for us because most of the time we don’t get a whole lot of “goods” on his monthly report card. But, the team cares. They joke. They offer advice and support. They listen. They go above and beyond for all their patients. No matter how you feel walking in you leave feeling a little lighter and a little more hopeful. And at this stage of the game that’s huge.
We head back for another set of labs in two weeks to determine if the changes they made are going to help. Cross your fingers and say a prayer that we finally find the right combination to get him stable. We know we’ll get there eventually, I just rather it was sooner than later.