Thursday, September 17, 2015

For my notes - Exact timeline presented to Dr. Volz on September 15, 2015 for his information

Donna Apperson

(757) 561-9013

5004 Fenton Mill Rd

Williamsburg, VA 23188

CC: Bladder tumor (papillary), TURBT, complications, second surgery, continued pain.

4/19/15

ER for blood in urine, CT scan fine

About 2 weeks later, met Dr. Burgess and set up US, which was fine

6/8

Cystoscopy with Dr. B, diagnosis of tumor

6/18

Surgery, routine TURBT, and mitomycin C instillation in recovery room

6/21

Exquisite pain with urination. End of day was crying with pain. Curious why starting in 3 days.

Started pyridium in case it was the spasms I heard so much about. Blood in urine. Small strands

of something.

6/22

Called Dr. B's office early a.m. Drinking water to try to help. Heard nothing. Called them at 1:30.

They suggested an urgent care or my regular doctor because their AC was out. I was already in

the car on the way to pick up an Rx at their office, which they were not going to be there for as it

turns out. I said to nurse, "do you mean there is nothing you can do to help me?" No response.

Called Dr. Hoag's office and they worked me in, prescribed pain meds and antibiotics just in

case. Told me to follow up with Dr. B.

"A night of essentially no sleep, pain that I've never felt before, and just having had surgery -

this concerned me."

Pain level down to 8 instead of 11 with pain medication.

6/23

Pain at 7-8 with residual of 5ish. Realize that meds don't make it go away, but they do damper

it. "I'm still befuddled by the urology office's non-responsiveness yesterday. "

Continue with severe pain.

6/24

Still thinking I have an infection that is causing the problems. Pain at a 7 again. Cut Percocet in

half.

6/25

Pain 5ish on urination, long recovery time.

Donna Apperson

(757) 561-9013

5004 Fenton Mill Rd

Williamsburg, VA 23188

Page 2

6/26

Pain explained by Dr. B's office as normal healing, as bladder spasm. I am hesitant to buy that.

Blog indicates beginnings of 'this should not have happened'.

6/27

Still taking pain meds. Slept 5 hours last night. Pain at a 1ish. Best day so far.

7/4

Still feeling the pain and tingles with urination. No heavy duty pain.

7/10

Blood in urine. Tingles (heavy) and after effects with urination. Almost like orgasm. Again told

this was normal healing.

7/14

Pain, blood, tingling increased, uber frequency, up 4 times at night. Urgency personified. "He

says it's normal healing. I say that's f** up, " Call in two weeks.

7/15

VESIcare. Tried to go back to exercise. Too much frequency and urgency in the pool. Read

VESIcare doesn't start working for 8 weeks. Almost a month out and still being relatively

dismissed by gatekeepers.

7/21

Going every 10-30 minutes (varies with 5-15 minutes). Staying home a lot now. Get up hourly at

night to this day (9/14) with an occasional 2-hour stretch of sleep.

7/22

Still having heavy "orgasmic" feeling with each pee.

7/24

Daily every 15, nightly around every half hour to an hour. Doc offered Myrbetric. I am good with

that.

7/25

Missed my 60th birthday party in VA Beach.

7/27

Beginning to wonder if something is really wrong that can't be fixed.

Donna Apperson

(757) 561-9013

5004 Fenton Mill Rd

Williamsburg, VA 23188

Page 3

7/30

Called doc. I was a tired mess. Getting up every 15 minutes to a half hour a night. They said

come in "to see him" at 3. Did emptying scan after UA. Nurse comes in with bag of VESIcare

and says to try this. What? We've done this before. Told me it was a nurse visit and I said that I

was there "to see him" at 3 like they told me. He brought up potential irritation or allergy to the

Mytomycin. I asked about cystoscopy and he said that wasn't my decision to make. Would not

offer pain meds, but offered Valium. I turned that down. Told me to take high dose ibuprofen

and Benadryl. I had one 45-minute stretch of no peeing. Still passing blood clots. Overnight, one

hour stretches of sleep.

8/3

Cystoscopy. Showed a serious amount of inflammation (like stalactites) and red tissues. Former

tumor spot nice and pink. Dr. B consulted with partners. One of the three had seen it once

before. 1 in a million allergy. Dr. B's attitude changed immediately. He said to let him know how

I'm doing. I said his staff appears to not get information to him. He gave me his email address.

8/5

Busch Gardens for 2 hours. Hit every bathroom that was a bathroom. No rides or shows; was

there to hang with sister and her grandkids. It was good to get out.

8/9

Rescheduled trip to Phoenix until November.

8/17

"I'm tired of being broken." Two months from original surgery. Still pain, frequency, urgency,

aftershocks.

8/19

Sent Dr. B email update. Seriously considering second opinion.

8/20

He replied saying to make appointment for Monday for another look. I'm over it. At about every

5 minutes, extending to 15ish with the ibuprofen.

8/22

VA Beach to sister's house. Two stops on the way, every 15 while there, two stops on the way

home.

8/24

In for cysto. Accepted Valium Rx for the days before next surgery, which is now a real thing as

the reaction inside is not much better. Dr. Schultz came in during cysto; Dr. Peet was a little

late, but all of them were slated to be there to see the sideshow that my bladder has become.

Dr. Schultz said that they were obligated to remove 'that.' Change of urologist after this

procedure is going to happen.

Donna Apperson

(757) 561-9013

5004 Fenton Mill Rd

Williamsburg, VA 23188

Page 4

8/26

Wet my pants. That is what my life has become. Humiliated.

8/27

2nd surgery. Paperwork says TURBT, but that's not the surgery I'm having. I am having a

cystoscopy with removal of inflamed tissue. I mention this twice. Surgery goes okay. Pain meds

and antibiotics provided, along with pyridium. Partial cystectomy not ruled out, but not today. I

know tissues were cauterized and underlying tissue apparently looks okay.

8/28

Expected peeing daggers and pain happening. Above a 10. Tampered by pain meds.

8/29

Slept for a 2-hour stretch last night. I feel like I might have hope. No more blood or strands in

urine and there hasn't been the extreme 'spasm' pain.

8/31

Urination still painful, tingle through to the top of my head, then after shock pain in the perineum.

Ranges from 3-7. My hope is dwindling.

9/1

Tried a Percocet. Haven't taken any in a while. It calms the surrounding tissue but does nothing

for urgency or frequency. Didn't expect it to.

9/8

More of the same, Pain on urination, frequency, little improvement. Saw Dr. Hoag. BP is way

up, which is not a surprise, given the past almost 3 months. Saw. Dr. Burgess and set

appointment for cysto on the 28th. Called Volz' office when I got home. I'm done with Dr.

Burgess' staff.

9/14

More of the same. If I take Percocet at night, the pain at night is tempered which helps not focus

on it so I can sleep, but I do not want to and am not taking it every night. I tried for three nights

and it was great. Having said that, I'm still up every hour. I’ll go to bed drug-free tonight. I need a

clean baseline.

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