- Why, when I called with the extreme pain episode, wasn't one of the partners willing to at least talk to me and instead, had the nurse tell me to go to a doc-in-the-box or my regular doctor as I might have an infection? I was 3 days post TURBT. Someone should have known I needed help.
- Why did no one contact me a day or so later to see how things went?
- Why was I given VESIcare when effects don't begin for 8 weeks according to the web site?
- Why was I then given Myrbetric when effects don't begin for 8 weeks according to the web site?
- Why was I told to "come and see him at 3" and was given a nurse appointment and a suggestion to try VESIcare? (This is the appointment that I said I was there to see the doctor, Richard was with me, I hadn't slept longer than a half hour at a time for a couple days, I was in extreme pain, and Dr. Burgess seemed short with me/us.) As a maybe, he suggested maybe I was having an allergy to something and to take high dose ibuprofen and Benadryl, which I did. Valium was offered and denied as he would not prescribe pain medication, insisting it would not help with bladder pain.
- Why when I asked at the above appointment if a cystoscopy might be in order to see if something is going wrong did Dr. Burgess reply with, "That is not your decision to make."
- Why did it take so long to do a second look cystoscopy after the TURBT when I was in extreme pain the whole time, not to mention the urgency and frequency along with the lack of sleep?
- Why did Dr. B. say "holy bladder Batman" when the pictures showed on the screen of the most awful looking stuff I've ever seen in what used to be a beautiful pink bladder? I wasn't until now that a true allergy was mentioned.
- Why did all three urologists in the office come in to see the re-cysto a couple weeks later after ibuprofen and Benadryl treatment? Why did Dr. Schultz feel it necessary to mention the obligation to remove 'that'?
- Surgery was scheduled for 3 days later. Why did he not answer my email about the one patient Dr. S had seen with this reaction? I had asked how she fared. He did answer me just before surgery. I wanted the reassurance that she was okay.
- Why did it take me asking if I was going to have spasms again (which is what I was told the initial pain was) and when he said I probably would, why did I have to insist on an Rx for something for the pain?
- Would treatment and outcome have changed, different, or improved had the practice taken my level of pain seriously when I very first called about it? Would the time between the first and second surgery have been lengthened or maybe not even needed?
- Will I need the partial cystectomy? That one, only time will tell, but he could not tell me no when asked today.
My answers are my own opinions - I feel like I was dismissed as a whiner, a lightweight with pain, and someone who wouldn't accept that this was normal healing. I believe that there are serious disconnects between the front office, nurses, assistants, and physicians, and that it's highly probable my messages were not coming through loud and clear and not getting to the right people. I feel like the whole practice dropped the ball with postop care. I feel like I missed quite a few events and opportunities this summer and I've expressed those earlier in the blog and there is no need to go further.
I believe that I've had enough. I took a trip to Richmond Saturday with two stops up and two stops back. There was also the draining of my tank before we left and as soon as we got home. I will have to, for now, accept that as my fate and just get back to living.