…same as the first. Just a little bit louder and a little bit worse! BLAH. Well, remember the post where I said things weren’t great? Labs confirmed our thoughts. Unfortunately, Jamey’s kidneys have went downhill a bit. His creatinine is up to 15 and his BUN is up as well around 98.
The good news? We have a FANTASTIC team of nephrologists, nurses, social workers, dietitians, and coordinators figuring this out for us. Jamey met with his team today. They were armed with his lab results and he was armed with his current list of concerns/questions. Most everything on his list of how he was feeling was already visible to the doctors in the numbers from his lab work.
A couple big problems right now: he’s exhausted, he is swollen, he has RLS. We are finding that kidney disease is just a bunch of loops. It all started with kidney disease — which causes high blood pressure — which causes kidney disease. See what I did right there? Yeah. Sigh. Anyway, using the cycler every night doesn’t help with the sleeping situation. [REVIEW: The cycler is the machine that fills and drains the dialysate to/from Jamey each night. The dialysate’s job is to pull toxins out of his blood stream.] The cycler alarms when he needs to move – sometimes every 90 minutes. So he (we) wakes up and readjusts. Having RLS also makes it difficult to fall asleep. One other factor for being so tired is being anemic. So, to combat this problem he is getting a much higher dose of Epogen. They have also changed his dialysis prescription to 5 cycles of 2500ml over 10 hours each night (it was 4 cycles of 2000ml over 8 hours each night). We used to hook up two bags of dialysate each night and now we will use three. (It’s the first time I’ve used the line with the blue clamp. The little things now excite me.) This big change should also decrease his uremia (toxins in his blood). And with all of that – we are all hoping for a bit better labs which should result in more sleep.
[REVIEW: Your kidneys help regulate your bp. When your kidneys aren’t functioning your bp isn’t great.] One of his bp meds was increased recently. It is possible that drug is causing a bit of the swelling. They decreased that specific bp medicine, removed a second bp medicine, and replaced it with a new one to see if this makes a difference with the swelling in his legs. The dialyis prescription change that I mentioned above should also dramatically help with the swelling.
[REVIEW: Restless Leg Syndrome is a symptom of Cronic Kidney Disease.] We had been advised by a couple nurses that there is a drug for RLS. However, Jamey’s nephrologist believes that in his case it could be caused by a combination of uremia, swelling, and some of the medicines he is currently taking. We are hoping for some calmer legs with a few drug changes and some prescription strength vitamin D (and hoping we don’t have to add an extra drug to the mix to deal with the RLS).
Here goes our first night with three bags! Let’s get some sleep and bring down that swelling! 🙂
Continued prayers for a new kidney and restful nights for both of you.
I am still praying for you all. Love you all.