Standing Still or Stepping Forward
Our dialysis story — chapter 13
The last time I wrote, I was bemoaning the plumbing inspection that had been “disallowed” because the minor repairs weren’t completed fast enough, thereby requiring a new inspection. It was ridiculous. I called the plumbing company on Monday and was shocked to find out that the inspection went through. I guess my outrage while speaking with the inspector worked. He reactivated the inspection from two weeks ago and approved it. Now, I’m waiting for the contractor to permanently repair the holes in the wall and retile the bathroom floor. He hasn’t given me a date or even a timeline as to when he can add me to his schedule.
Last week, Ben saw his hematologist. Usually, he gets a PROCRIT shot when he’s there. PROCRIT stimulates bone marrow to make more red blood cells. Since he’s in dialysis, she said PROCRIT is administered at the dialysis center. She also said he no longer needs to take iron pills because iron is added to his blood during dialysis.
Ben said he doesn’t receive shots at the center, which made me wonder if he is getting PROCRIT. Maybe it’s added directly to his blood like the iron? I emailed G at his nephrologist’s office. She said he should receive PROCRIT and iron during dialysis but suggested I confirm with Ben’s nurse at the center. When I asked the nurse on Wednesday, she talked about “protocols” that haven’t been “handed down” for Ben yet. I had no idea what that meant. She suggested I ask his nephrologist. Hmm, I started with his nephrologist’s office. Another email to G this morning. It’s 5 pm, and I haven’t received an answer.
Meanwhile, I’m slowly assembling Ben’s Evacuation Kit with whatever information and items I have available. I won’t add food until there’s a hurricane on the horizon. We always have enough time to get to the grocery before a storm.
We’re settling into a dialysis routine. It’s just over six miles from our house to the center. I drive the route twice on Monday, Wednesday, and Friday for a total of 24 miles a day, 72 miles a week. We could arrange for free transportation through his insurance, but I’ve seen the patients that wait outside the center for transport. In the heat. Many in wheelchairs.
Each medical transport van picks up more than one patient. I can’t bear the thought of Ben sitting there — after 3 and 1/2 hours of dialysis — waiting and waiting for a van that will make multiple stops before he arrives home. No, as long as I can, I will take him there and bring him home. The broad smile on his face when he sees me, makes all the driving worthwhile.
Meanwhile, I’ve made some observations about the other dialysis patients. Most are younger than Ben but in much worst condition. Many are in wheelchairs. Some can barely communicate. I’ve tried to make conversation with a few and barely got grunts in return and, sometimes, only a blank stare. Ben, even when not compared to the other patients, looks great, carries on complex conversations, and is completely ambulatory. Despite all his health issues, he’s doing remarkably well, and I am very grateful.
Ben’s energy isn’t what it once was, but it’s getting better. His blood pressure is more controllable, and he’s eating well. I was thrilled to hear him singing yesterday morning as he prepared coffee. He used to always sing in the mornings, but he hasn’t in a very long time. And this morning, he did a few tango dance steps in the living room!
He finally looks and acts like my Ben.
Now that the absolute necessaries are under control, I’ve been able to turn my attention to other things. My friend Gina came Sunday with her chainsaw and took down three ornamental trees next to my back porch that didn’t survive our winter freezes. We had one of those trees for 18 years. Broke my heart to see in cut into pieces. Fortunately, there is growth from the roots of all three trees, so I hope they’ll regenerate.
Much of my attention has been on Louise Peacock, my co-editor for Weeds & Wildflowers. For those of you who don’t know, she had a stroke this week and is hospitalized. She has no use of her left side and can’t walk. I’ve struggled to wrap my brain around that news. Although older than me, Louise has a gardening business and stays active. I can’t imagine her stuck in a hospital. Since she’s almost 1,500 miles from me, I can’t go to visit. It’s times like this when I’m immensely grateful for electronic communication.
I’ve been very busy at work, which is good since I need to pay off what I borrowed for the re-piping of our house. The extra work will continue for at least two or three weeks.
Since Ben is gone so many hours each week, I try to run errands, grocery shop, and do all that needs to be done at home while he’s at dialysis. My days are very full.
I used to fall asleep around 11 pm, but these days, I rarely make it to 10 pm. Sometimes, I’m out by 9:00.
As this week winds down, I know we’re standing still in regard to some issues, but we’ve definitely made some forward progress.
© Dennett 2023
Our Dialysis Story:
