I am slowly getting better. I’ve noticed little things, like being able to take a shower without having to take a nap afterward. Or yesterday I was able to stand up the whole time while washing the dishes; I didn’t have to sit. (Yes I have a dishwasher; no, I don’t use it.) And I’m beginning to sleep a little better, which makes a huge difference. So, while it’s taking time, at least things are moving in the right direction.
The biggest improvement happened late last week when I realized all the shakiness was gone! Just like that, gone. This was quite a relief because even if my hands weren’t shaking, my insides were. It was just this constant extreme “buzzing” sensation. It was really bothersome.
I’ve had two chemo shots so far and will have another tomorrow. No reactions to speak of. The shots are given in my stomach, and they rotate between the right and left sides. I have nice looking bruises at the injection sites, but they don’t hurt or itch at all. So far, no sign of any neuropathy symptoms but it may be too soon to tell. Tomorrow they will also check my hemoglobin to see if I need another Aranesp shot. I’m guessing yes, but we’ll see.
I am definitely retaining fluid again but certainly not like before. My weight is up about 10 pounds. My hope of course is that it won’t continue to increase. If I stay at this level, I can continue to function. It’s mostly accumulating in my legs and feet. It’s eerie to push on my skin and just seen this big dent remain. I’m back to living in my compression socks. Since I’m only on 10 mg of prednisone, I don’t believe that is what’s causing the fluid retention. However, I’m also on dexamethasone, another steroid, although I only take it on Wednesdays when I get the chemo shot. But I have to take six pills, and I was told that will cause fluid retention as well. But I think the primary culprit is just my poor kidney function. I haven’t seen my latest GFR, even though I looked for it today in my lab results. For whatever reason, I didn’t see it. I’ll have to look again.
I don’t believe that I can expect any change in my kidney function any time soon, assuming this new drug is even going to help. I think I will have to wait the full three months before we know if it’s making a difference. Between now and then I’m not sure what will be done about the swelling, if anything. I guess it will depend on how much fluid I retain, how I feel, etc. I am still on a diuretic, and I have another one I take three days a week. I have a freakin’ pharmacy’s worth of pills at my house. Nothing fun though.
This weekend…more lab work and urinalysis. Dr. A said I will need to repeat the 24-hour urine test in early January. Again, I doubt we’ll see much improvement this soon.
My blood pressure is still high, despite being on two different medications twice a day. It’s discouraging that we can’t get that under control. The excess fluid certainly doesn’t help.
I finally got an appointment with the ophthalmologist, although it’s not until mid-January. My eyes are still swollen. It’s every day; it never goes away despite eye drops, ice, sleep, etc. It’s gross. Luckily it doesn’t affect my vision but it’s still gross.
Yesterday I met with the peritoneal dialysis (PD) nurse. It was incredibly informative. Who knows if or when I’ll need to go on dialysis but I just felt it was in my best interest to get the information. PD is done at home and is done through the stomach. A dialysis catheter is placed, which is done as a day surgery. Two weeks after the catheter placement, I would go to the dialysis center for eight days (in a row!), four hours per day, for training. The last day of training, they come to my house and observe my going through the process on my own.
It looks relatively simple, as much as a process like that can be. It’s time consuming, as it does take eight to ten hours but most of it is done during sleep. Eight to ten hours of sleep?? What decade was it when I last got 8 to 10 hours of sleep? Not to worry, said Nurse Denise. I can start the process early and then just continue on when I go to bed.
She said that most people feel really good after PD, more so than with hemodialysis (HD). She also said the long-term outcomes for people on PD are better than those on HD. The main difference is that HD is typically done three days a week where PD is done every single day.
She also said I would have 24-hour support if needed. They train people to do PD with the machine as well as manually (I don’t know what all this means yet). She said most people use the machine because it’s more convenient. But some people use a combination of both methods, just depending on their needs.
Once a month I would go to the dialysis center to have labs done. She said they can also show me how to give myself Aranesp when needed (I don’t know if she meant as a shot or if it was medication added to the dialysis solution). The “success” of dialysis is measured in terms of the lab results but also the urine output. “We LOVE urine,” she said. (That should be a bumper sticker.) If urine output is adequate, dialysis is working.
She said that once people go on dialysis, creatinine levels no longer matter. The benefit to that is that I could go back on lisinopril for my blood pressure if needed. But let’s hope that the damn BP is under control before then.
I would have a “team” of people I would be working with, which includes a doctor (I assume my nephrologist), a nurse, a nutritionist, and a social worker. Apparently, dialysis patients need to up their protein intake because on dialysis, people tend to lose protein. And the social worker is the one who, among other things, figures out how all this gets paid for. She did say that patients on dialysis qualify for a special type of Medicare. I didn’t know that. I would assume that I would still be using my insurance through my job as well. Still lots to learn.
I asked about travel and explained the nature of my job. Under normal circumstances, I have three overnight trips per month. She said the dialysis unit packs up into a suitcase about the size of a carry-on piece of luggage. I asked if it were ever possible to get two units, as I thought it might be convenient to just keep one in the car. But the answer to that is no. They’re expensive; they’re not just going to hand them out. (I’m paraphrasing. Those weren’t her words.) So… I’d have to pack up the unit in the mornings before I hit the road. And make sure I have all the supplies with me. That sounds cumbersome but doable, I guess. Luckily this job has taught me to be pretty organized.
For vacation travel, she said I would just pack up the unit in its suitcase and take that as my carry-on luggage. She also said the company that sends out all the supplies can send them ahead to my destination. That was a cool idea. I didn’t even think of that. OH—and I can still go in the ocean! I can still snorkel. My one passion in life. Whew! No public pools or hot tubs but the ocean is safe. Woo-hoo!
Speaking of my work travel, she said that I really should NOT be traveling at this time due to the COVID exposure while staying in hotels. With my crap kidneys and the immunosuppressive meds I’m on, I’m at “very high risk.” She said she was sure Dr. F (the local nephrologist) would write me a note for work if I wanted it. But I mean, this is my job; this is what I get paid to do. I reassured her that as soon as I get into the hotel room, I clean everything down with hospital grade disinfectant wipes. I also had been taking a sleeping bag and my own pillow but sort of slacked off on that. She said I ought to start doing that again. So I guess I will. (As I type this, the COVID vaccine is just beginning to be distributed, so hopefully that will be a game changer for all of us.)
Denise was really knowledgeable about all this PD stuff and also seems like a super nice and caring person. She reassured me several times that there would always be someone there to support me through the process if I had any issues or questions. I hadn’t realized how intense the training would be but obviously it’s great that it is.
It was so good to get all this information. Again, hopefully I won’t need it or at least hopefully I won’t need it for some time. But even though there’s obviously still a lot to learn, it’s far less mystifying than it was prior to this meeting. It’s not this scary overwhelming thing anymore. If I have to do it, I can handle it.