It’s funny. I’m actually having a hard time writing about my good days. I didn’t intend for this whole blog to a giant whine. I really do have some easy days.
I honestly like my monthly PD Clinic.
Part of the process on PD (as with HD) is to get blood taken for labs once a month. Sure it’s a little bit more of a hassle when you’re on PD. I have to make a special trip to have the blood drawn as opposed to HD when the blood just gets taken while you’re hooked up to the machines with no extra needles.
The thing is, I adore my medical team. I always spend more time than I really have chatting with my PD Nurses. We joke and talk about vacations and movies. They’re really wonderful to talk to. I see them when I pick up my orders for the blood work then I drop off the samples that get sent to one of my transplant centers. To the other transplant center, I spring for the postage myself and overnight the sample.
Usually the following week is when I see my entire team: Nephrologist, PD Nurses, Social Worker and Nutritionist.
At the beginning of the appointment we get my weight and blood pressure. I give my Nurses my flow sheets (the tracking forms on which I record daily weight, blood pressure, dialysis solution and vital drainage stats) and we go over my medications every month.
Each member of the team visits me in the exam room, we chat, they answer any questions, discuss medications and nutrition and my overall well-being. This last time I brought cookies because my nutritionist keeps hassling me about the recipes I’m always going on about.
Oh, and I rock my labs like crazy. I love bragging about my numbers. Basically, with the exceptions of PTH, Creatinine, and the specific anemia markers, my numbers are just about perfect. I’ve even been able to forgo iron infusions for the last four months.
I seem to be the anti-patient.
This is part of what makes PD work for me. While I do keep an eye on my phosphorus and sodium intake, I’m able to eat almost whatever I want – as long as I keep the protein and leafy greens intake high.
Lets face it. My good days are boring, but I kind of love them. I lucked out with my medical support team. I like that my doctor gives me crap and tries to keep me grounded about how well I’m doing right now. He reminds me that what’s most important is that I while I may feel pretty good right now, I am in Stage V. There’s no getting better, no rebounding, just treatment which includes transplant. He also reminds me to drink as much fluid as I can right now because there will come a time when I’ll be on fluid restriction.
My nutritionist asks me for recipes while she give me tips. I even share the correspondence from my transplant centers with my Social Worker to keep her in the loop.
Pro tip: Being your own advocate may be exhausting but it’s vital to your treatment. Your health team is there for you, use them and ask plenty of questions. Keep them in the loop even when, especially when that loop has you going in circles. Not only will you surprise your team by keeping them informed, but you’ll get positive feedback for it too.