Tuesday, September 8, 2015

Follow ups

10 a.m., appointment with Dr. Hoag. I told him that other than the level of pain from when he saw me last (my crisis day), nothing had changed and that I had another surgery. He seemed somewhat befuddled and gobsmacked too. My weight was the same, which was a surprise to me. I was sure I had gained over this interval as eating has been meh and exercise has been nonexistent. Blood pressure, though, was through the roof due to all the stress and other life changes that have been going on since April and June. He prescribed an ACE inhibitor and that also acts as a kidney protectant, so I'm fine with that. My diabetes will be thwarted for that organ at least.

We addressed the what's next for the bladder issues. I told him I was considering switching to Dr. Volz once I knew what was up. He suggested to stop putting it off and go on and make an appointment in Portsmouth. That's what I did when I got home, but we'll get to that. We discussed how the Riverside Urology office is too busy and what I heard, but not exactly what he said was, they couldn't possibly provide the level of care I needed. I want to reiterate - that is paraphrased.

I will see Dr. Hoag in a week for a BP check.

I left and went to Chickahominy House and it was the perfect interlude. I had some time to kill, so went over to the Habitat for Humanity ReStore. Wow! They have an amazing array of stuff for not a whole lot of money. I was impressed and found myself a couch too :)

Off to Dr. Burgess' office. I saw him as I was checking in and he asked if I was smiling yet and I said not quite, but that I'd like to say I was! He said he had good news for me. I was called back and did my urine test and then hung out in the patient room. It only took a few minutes before he came in:

  • The tissue removed was not cancerous.
  • The tissue beneath it was pink and healthy looking.
  • There is still some healing to do, but now I am experiencing the symptoms I should have had the first time around.
  • He was surprised that Dr. Schultz said, "He's obligated to remove that!" when viewing the cystoscopy live before the surgery.
  • He said there was some improvement from the second cystoscopy to the time of surgery.
  • He admitted that a partial cystectomy is not something that he would do now. He did not rule out that it may need to be done later. 
  • I explained that I'm still going every 5-30 minutes during the day, that the pain level is lower, that I'm up at about a 1-hour interval at night. 
  • We talked about bladder training; I initiated this. We agreed it probably wouldn't work much right now. 
  • We talked about my trials for sleep - 
    • Valium didn't help me sleep and though it wasn't a barrier to going back to sleep after getting up, my mind was still racing.
    • Ambien makes me too tired and I'm afraid I'm not waking up on time.
    • Nothing at all gets me to sleep eventually, but it a barrier to going back to sleep with the hourly wakeups and I find myself reading or getting up out of frustration.
    • Percocet calms the burning pain that I experience in the nether regions, calms my brain enough to get me to sleep, and is not a barrier to getting back to sleep. 
  • We settled on a Percocet trial. 
  • I told him I wanted to mention from patient to doctor that when someone says they can tolerate pain (pointing at my knee scars) to please believe them. 
We talked about the rarity of Mitomycin C causing such an allergy, that it's just something that is done all the time, and Dr. Schultz, in his 28 years of practice, had only seen it once. I reminded him that my asking how Dr. S's patient fared before my own second surgery and his response that she did well was good for me to hear at the time.

I told him I had not bombarded him with emails this time because I wanted to try to heal myself with water, rest, and all that good stuff. 

I asked him to believe his patients and that now we know it was not normal healing. He side hugged me close and sent me on my way with an order for a cystoscopy to check for further healing in 4 weeks.

I called Dr. Volz' office when I got home. I told them I'd like to have a conversation with him before I got into a second opinion or switching provider situation. I guess I'm not the first one to do that because they got me an appointment for next Tuesday at 1. I want my life back and I want faith in my provider. 

I'm sure this is not the end of the story, but it may be the end of a very dreadful chapter. Like Dr. Hoag said, a lot of people say they had a summer of crap; you're the first person I've heard say they've had a summer of pee. 

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