Well, I think I have enough energy to lay this out in a way that is both coherent and rational. We’ll see. 😉
When I go to a new healthcare provider, I bring a flip-chart synopsis of my medical history. Diagnoses, names of caregivers, lists of prescriptions, dates of last <whatever>, etc. Dates of surgeries and hospitalizations are all part of this.
I’ve had some really wonderful care providers. My immunologist in NC, for example, loaded me up with powerful antibiotics to have on hand when I went to Orlando last November, because she understands my condition and trusts my judgement. I didn’t have to use those antibiotics, and they are still in my meds drawer.
Other than urinary tract infections, I haven’t been seriously sick since I got encephalitis three years ago, because my doctors have listened to me and trusted that if I wasn’t feeling well, there was something going on, and they did something about it.
So imagine my surprise when the doctor who performed my “simple robotic hysterectomy” ended up taking out all of my reproductive organs. He told me that my uterus had been “fused to my colon and my bladder by endometriosis.” He told me he’d had to “dig out” my ovaries. He was pretty apologetic at the time.
But they sent me home THAT night. I had a catheter, and they sent me home with no antibiotics or anything.
The catheter was supposed to come out on the 14th, but they were not satisfied that my bladder was functioning properly, so they sent me home with that catheter for another five days.
While I was there, I asked them if they could do anything about the pain. I felt that I wasn’t getting any relief from the 5 mg of Oxycodone and Acetaminophen (Percocet) every six hours that I’d been prescribed. The PA recommended that I go to every four hours, instead. I asked if she’d refill the prescription. She said she’d send it in so that it would last.
I switched to every four hours and it seemed to help. I kept checking the pharmacy, but the refill was not called in. I continued to call about a refill and never got any response, other than to try ibuprofen, which I can’t take, because I have ulcers, and I’ve told them this.
By Sunday, I was beginning to feel the usual symptoms of a urinary tract infection. I thought that my urethra was probably just irritated due to the catheter, but I resolved to call Dr. Lim first thing in the morning.
In the morning, I felt like my bladder would burst. I had emptied the bag, and noticed that it didn’t seem to be refiling. After several attempts to reach him, Dr. Lim finally called me and told me how to take out the catheter, myself. The relief was dizzying!
The catheter was clogged with mucous and blood. I was just glad it was gone. He did call once, afterward, but I had missed the call.
That night, I began to have fever and chills. I was trembling all night. At four in the morning, I began calling the doctor’s office because I felt so awful I thought I was dying. I spoke to Dr. Lim, one time, and he told me I should go ahead and go to my follow-up appointment for the catheter, even though it was gone.
When I reminded him that it was gone, he said he’d call me back to let me know if I should go.
I never heard from him again.
I finally felt like I might actually die, and I told Drew to take me to the hospital. We didn’t make it to the highway before I was vomiting. Drew panicked and took me to the fire department, where they transferred me to an ambulance.
While they were in the process of transferring me to the ambulance, Dr. Lim’s office called. I explained that I was on the way to the ER, and they told me to go to a hospital OTHER than the one where I’d had my surgery.
That’s how I ended up at St. Mary’s, which is the absolute worst.
They wouldn’t give me pain meds or come when I called. I laid in wet bedding because no one would come when I would call to be taken to the toilet.
I’m home, now, and basically saving my energy for trips to the toilet. Otherwise, Drew is doing everything for me. Kevin helps, too. I don’t know when I’ll start to feel able to do for myself. For now, I’m just grateful to get to the bathroom in time.
I don’t know what I’m going to do about the follow up on this surgery. I have a stint that will need to be removed, and I have no idea what to expect now that my ovaries are gone. I don’t ever want to let Lim near me again.
I feel like I’ve lost so much ground.