Four month follow up story… Bob Stump
It is now four months since I underwent radical cystectomy, during which my bladder, prostate, many lymph glands, and whatever Dr. Hrebrinko selected was removed. He observed after the surgery that it had gone well, that it had taken less time than he’d expected. He had built a neo-bladder and had hopefully been successful in nerve sparing when removing my prostate. I had an anesthesia which included many tiny tubes implanted in my spine carrying the anesthetic – for a nerve blocking strategy about which the doctors at Shadyside Hospital (UPMC) were very proud. This strategy allowed use of much milder general anesthetic and enabled me to become alert rapidly after surgery.
I did not require time in the intensive care unit, but was taken to my room on a floor of Shadyside Hospital which was reserved for patients who had had urologic surgery. My wife and friends were present when I came to, and they report that I seemed quite alert, talking to them, etc.. I do not remember coming to at that time, however I am able to recall most that happened there after the second day. I had access to self initiated release of morphine which I used regularly proactively. I was able to keep my mouth moistened with the oral sponges. The use of chap stick immediately after the surgery, and regularly until I was able to drink liquids was important in helping me to be comfortable.
My surgery was on a Friday. I went home from the Hospital the following Wednesday, which was sooner than we expected. Having a family member or friend stay overnight and with me every day after the surgery was very important to me. I drifted into and out of consciousness, a lot of sleeping, the first couple of days, but it was very helpful to always have someone there. The day before I went home (Tuesday) I was not feeling up to leaving yet, but I did really feel ready Wednesday – – each day made such a great difference in my getting and feeling better.
One day post surgery nurses had me transfer from my bed and into the chair. On the second day they had me walk about 20 feet and return. The scariest part was when I went to stand up and found I could not use my stomach muscles to help me (although the Dr. didn’t cut any muscles, but went in between them to do surgery). I was insecure in that if I started to fall over I wouldn’t be able to help myself, and that I might be too heavy for the nurses to support. By Tuesday I was walking confidently alone. The morphine drip was taken out on Monday and the nerve blocking array also removed on Monday. When nurses heard bowel sounds I was allowed to eat and drink starting Saturday afternoon.
I was, of course tired when I got home on Wednesday PM. I did regular irrigation of my innards as per my Doctors instructions. I kept the collection bags and my plastic tubing in a little shopping bag which I carried as I moved around the house, up and down stairs. I arranged for an aid to come to the house and watch me while I showered. She offered very useful suggestions and observations which helped me avoid potential problems. A nurse also followed up with home visits until after my catheters were removed.
I went to my daughters house for Thanksgiving (two weeks post surgery) and then went for my first follow up visit where everything looked good and my urethral catheter was removed. The surgical biopsies had come back with no positive findings. I stood up and peed at the end of the Dr. visit and my muscles, the neo bladder, and its connections worked well. I cheered and applauded the doctor and myself with pure joy.
On my second follow up visit (one week after the first) the supra pubal was removed. Everything was functioning good. I had 2 occasions when I needed antibiotics for light urinary infections. These occured during the first month after coming home.
Except for about 4 occasions since my surgery I have been able to maintain continence. Started out at about 3 hours between voiding. Now , four months later, I urinate every 3-4 hours. There were 2 mornings when I woke up wet (once when I didn’t get up to the alarm I set for the middle of the night). I have, without exception, been continent during the day while awake. Once I fell asleep in my chair without peeing first (I was due to do so) and woke up in the chair soggy. I still wear Depends when I think I might have difficulty or am going to be in a situation where I might not be able to pee on schedule (for example while flying). I sleep on a waterproof pad, always with an absorbant insert tucked in the front just in case I leak. The insert is rarely damp.
I have had no real pain or discomfort. I used my pain pills for the first 3 weeks after the operation, in decreasing dosages. In early December, about five weeks after I came home from the hospital, I went out to a meeting where I gave a presentation as keynote speaker. That was my first time out "in public" so to speak. During a Florida vacation in February I went swimming in pools and into the ocean . With my wife I hiked around Universal studios for four days . Other than needing to sit down for little rests toward the end of the days there, I had no problems. I am riding my motor scooter again.
f I were exercising more regularly I’d have greater stamina. We are planning a 3 week driving tour of National Parks in the Western US in May and I’m intent to walk and exercise near home before we go, so I can enjoy the trip more.
I will get my first post-op CAT scan this coming Tuesday ( March 14, 2006). I have to admit that I feel some anxiety about that, and I know I’ll never feel the same way about any kind of medical test again. Up until my first bladder biopsy last September I never had apprehension about medical testing, always expecting results to come back negative. Bladder cancer diagnosis was a big surprise.
The hardest time for me (us) was during the the days when I was waiting for surgery. I looked forward to the time when I could speak of my cyctectomy in the past tense. Now (thanks to God, Dr. Hrebinko, and the support of other people who cared for and about me) I can say "Back then, in November, when I had my radical systectomy, everything went even better than expected. I have recovered quickly".