“Hi. This is Jan Chait. I have an appointment with Dr. F. at 10:30 tomorrow morning. Would you please reserve the examining room closest to the accessible bathroom for me, please. Great! Thanks!”
That was my ophthalmologist’s office. At least he’s in town. Next was an appointment for my grandson in Indianapolis.
“Hello. This is Jan. I’m David’s grandmother. He has an appointment with Dr. L. at 11 o’clock. He doesn’t like to drive in the city; I’m having a kidney problem and just can’t make it to Indianapolis today. Can I reschedule, please? Oh, and do you have an accessible bathroom in your office suite I can use? The public bathroom isn’t accessible for me. Terrific! And Monday would be great! Thanks!”
Ever planned your day around bathroom availability? That’s what I’ve had to do lately. For Indianapolis, what I normally have been doing is to go right before I leave home and then at the Plainfield rest stop — right before the Indy exits and a little less than an hour from where I live. As I write this on Thursday, an hour isn’t working: I’m going about every 20 minutes or so today.
Sleep? What’s that? You don’t get a lot when you have to get up and go every hour. This is disgusting: On Memorial Day, and again last weekend, I put plastic on the recliner seat and lots of folded-up absorbent towels and such…and slept all day. In my urine. It’s the only way I could figure out to get some sleep.
Also, you know that I’m not a whiner, I’m not a wimp, and I’m not a crybaby. But I have been recently. After all the infections and surgeries I’ve been through over the past couple of years, a kidney stone has gotten to me. I mean, when I had my leg amputated, the hospital staff hung out in my room because I was so upbeat, making jokes about my leg (or lack of one) and so on. (“Yeah, you can tell I’m from West Virginia: One leg is longer than the other.”)
Pain. Burning. No quality sleep. A trip to ICU. An insanely long wait to see a surgeon to get the stone out… It’s the last straw. I give.
To give you an idea of what’s happening, make a fist. That’s about the size of one kidney. Now, imagine a 1-inch kidney stone wedged into the little funnel-shaped space where the ureter leaves the kidney on its way to the bladder. Nothing can get past the stone, so I have a stent in my kidney to drain it. The stent is the cause of the burning and frequent urination, but I need the stent. Pain pills are not helping.
On top of that, my glucose stopped its downward plunge and started soaring again. I’ve added back all of the basal insulin I dropped — and more. And my local urologist’s office was paying no attention to the fact that my glucose requirements are signaling that I may be getting into trouble again.
But (finally!) things are looking up.
I called the Indianapolis urologist’s office and put my (one remaining) foot down. I was rewarded with an appointment with the nurse practitioner (NP), which occurred yesterday (June 6).
Aside from the pain and the constant running to the bathroom, I told her, my blood glucose is whacking out, which is affecting my Type 2 diabetes. Also, I have osteoarthritis in my knees. It’s to the point of being bone-on-bone. “For example,” I said, “to go to the bathroom at night, I have to transfer from the bed to the scooter, from the scooter to the toilet, from the toilet to the scooter and from the scooter back to bed. Every time I transfer, I have to pivot on my leg. I’m tearing up my knee.”
I’m now scheduled to have surgery on June 27 to have the stone removed from my kidney. It will involve making an incision in my back, breaking up the stone and removing the pieces…and a short stay in the hospital.
Compare that to the original scenario, where I was to see the surgeon on July 5. At the time — in May — he was booking surgery into July.
When I finished my appointment with the NP, I was taken to the surgery scheduler’s office. She checked all of the surgeon’s schedules and the hospital schedules and got me in at the earliest date. Whew! I also got samples of a medicine that may stop me from having to “go” as often.
Maybe I could have had surgery earlier, had the local folks been listening to me, done some testing, and given me antibiotics. But they didn’t, and I can’t order labs myself.
But once I mentioned my skyrocketing glucose levels to the NP, she determined that I probably have an infection; my contribution is being cultured to see if I do and what bacteria is causing it. I’ll then be put on antibiotics for a couple of weeks to handle the infection before surgery occurs.
My poor endocrinologist. First he helped me with adjusting my insulin to take care of my hypoglycemia. That was almost immediately followed by helping me adjust my insulin to take care of my hyperglycemia. We just got that straightened out late last week.
Yesterday I e-mailed him to ask if he was ready to climb back on the glucose rollercoaster with me. “I’m probably at the top of the hill on the rollercoaster and about to head down again,” I wrote. “Do I know how to have fun, or what?!”
Maybe the hills on the rollercoaster won’t be so steep this time. I’ve learned from what he’s asked me to do to adjust my insulin over the last three weeks or so. (Sometimes I do listen to my doctor!) I found that I wasn’t being as aggressive in adjusting as I should have been.
The lesson? Don’t be afraid to take matters into your own hands. If I had docilely gone with what my local urologist’s office had arranged, I’d still be sitting around crying “woe is me!” As it is, I’ve calmed down considerably — literally overnight.