Wednesday’s lab visit was mostly routine. My hemoglobin was 9.8 so I did get an Aranesp shot. It had been a little over a month since the last one. My creatinine was back down to 1.3 (it was 1.5 last week) so perhaps the dehydration was responsible for the increase. My eGFR was 46. Today was the first day I used the frozen gloves. Hey guess what? They’re hella cold. That’s the point. I’m wondering if I should get the frozen socks too. I mean so far my feet have gotten the brunt of this. I’ll have to ask the nurse or perhaps Nurse Rose.
Friday I had an appointment at Tri-Core to get bloodwork done for Dr. E, the endocrinologist. She wanted to check my thyroid levels since the semi-recent medication change. I distinctly remember her telling me to have it done the week before Thanksgiving. But… when I got to the lab, there were no orders from her. I sent her a message, and today her nurse responded, “Doctor sent the lab orders. Please get them done as soon as possible.” Hmm. “As soon as possible” was this past Friday. They’re closed this Friday so it’ll have to wait.
Ah, the holiday season is upon us. This year promises to be better for me than last. It would pretty much have to be. Last year at this time, I was discharged from the hospital after a six-day stay. I know I’ve recapped this before, but I can’t believe how sick I was then and how much better I feel now.
When I was so ill last year, I didn’t know if I was going to die, but I definitely felt like I was going to die. (Although as I was unknowingly nearing congestive heart failure, I suppose I could have died.) I kept waiting each day to feel better. And the nephrologist in PA kept changing my meds to try to get the fluid out of me. But nothing was working. I was going downhill quickly.
The physical effects were bad enough: not sleeping, barely being able to move, complete exhaustion. But the mental stuff was even more difficult. I don’t think I can adequately describe how my head felt (but as I type this now, I am instantly catapulted back to that time. I still know exactly how it felt. It is not pleasant.). I generally have a pretty quick mind. But it was like my synapses weren’t firing, as if my head were full of cotton. And noise. So much noise. I couldn’t figure out how to accomplish even the most basic task.
This story is probably a repeat: I needed to pay my property tax on the house. But to do so, I had to think out every single step to get this done: I had to walk to my office, get the checkbook, write out the check (although there was no way I could write), put it in the envelope, and add a stamp.
I couldn’t do it. It was too overwhelming.
And even though I knew this was from the meds, at the same time in my muddled brain, I couldn’t figure out what was wrong with me. I tried to “will” myself to feel better. I’d try unsuccessfully to force myself to do something, anything. Every day I’d think, “Tomorrow will be better. Tomorrow I can get something done. I won’t feel like this.” It just never happened.
I waited several days too long to get to the ER. I’m pretty sure that if I hadn’t decided to go when I did that either my mom or Kyle would have insisted or would have called 911. I feel bad for all the stress and worry I put them through.
But if the task to mail a check was too much for me, you can imagine how overwhelmed I was at the notion of going to the ER. I’d pack two things in a bag, then have to lay down for a half-hour. It took forever to gather the stuff I needed.
And part of me still felt that I didn’t need to go to the ER, that I was just going to be wasting someone’s time, taking up a much-needed bed. This was last fall, remember, when COVID was out of control and hospitals were full (same as it ever was). Again, my addled brain couldn’t think rationally. I remember the relief I felt when one of the providers said, “It’s good you came in.” For whatever reason, I needed to hear that and absolve myself from the feeling that I was overreacting.
It took several days in the hospital before I began to feel even a little better. I was unbelievably weak and still completely foggy-brained. Doctors talking to me about dialysis, steroid infusions, chemotherapy. “I can’t even sign my name,” I thought. “I can’t process all this.” But fortunately, they made all the decisions for me. Good decisions. Life-changing decisions.
I honestly believed I wouldn’t get better. I thought that was it. That’s how my life was going to be. I’d have to go on dialysis. My mind would never get clear. I’d have to stop working and go on disability—not because of the dialysis, but because I couldn’t fathom being able to work in that condition. Everything was going to change. I kept thinking, “At least my house is paid off. I have a place to live.”
But to my utter amazement, I did get better. God it was slow going. The weakness, the brain fog. The shaky hands! Oh my god, the shaky hands. That lasted so long. My swollen eyes. And the broken blood vessels. That was so gross. My swollen face (thank you, masks). I can’t imagine what my patients thought.
Sleep was still beyond me. All those steroids made for long stretches of sleepless nights. I remember laying in bed watching those damn cooking videos on Facebook (I don’t cook), near tears because I just wanted to sleep. But it wasn’t going to happen. Instead over and over for hours I heard the guy from the Tasty videos say, “Oh yeah!!” at the end. I still experience a little anxiety when I hear that these days. No joke.
But here I am a year later: still working, not on dialysis, feeling like my brain is firing on most of its cylinders most of the time. Feeling almost like myself. I rarely have difficulty sleeping now, unless the neuropathy in my feet starts bugging me. I still have bags under my eyes but no swelling in my eyes. That’s something at least. I’m still very weak, still anemic, still can’t do a ton before tiring out.
But I’m better. Not unscathed. I’ve emerged with drug-induced neuropathy. Drug-induced diabetes. Drug-induced seriously fucked up hair. But so much better.
For how long? Anyone’s guess. I don’t spend much time worrying about that. I’ve always been a “right here right now” kind of person. I don’t tend to worry about things until they’re right in my face. I plan for stuff, I try to be prepared for things, but I can honestly say I recall only one night of having lost sleep worrying about what’s going to happen to me in the future, and that was directly after I was diagnosed. Nothing I can do about my kidneys. They’re going to do what they’re going to do. I just gotta buckle in for the ride.
It’s probably kind of dumb to be grateful for such a boring life, but I absolutely am. I’ll take boring over medical drama any day. I’m very thankful I can work. I can think. Grateful too to Dr. T for taking my case on and finding a treatment protocol that seems to be effective. He certainly didn’t have to; it’s not even his specialty. But I’m lucky he likes a challenge.
I imagine things are going to continue on in their present course for some time, so I may not be posting as often. I mean, how many times do you need to read what my creatinine is and if I needed an Aranesp shot? You’ve read it too much as it is. I’ll likely post after an appointment with the doc, or when something novel or interesting happens. Could be next week, could be next month. Who knows.
I hope everyone has a wonderful and relaxing Thanksgiving. Enjoy meaningful time with your friends and family. I think we’ve all missed that. We’re going to miss our dear friend Jack and our sweet boy Zeke. It won’t be the same without them.