My cancer-riddled bladder and prostate were removed a year ago today, and my neobladder was created at the same time. Too bad there was no warranty on the neobladder. It has always leaked, and it's not getting any better. In the past two nights, for example, I've completely voided before going to bed (in fact, I catheterized last night), and less than two hours after going to sleep, I was jolted awake not by just a slight trickle, but enough of a flow to saturate the pad, my underwear, and wet the sheets. Ick. It's not overflow or stress incontinence, since I had less than 100 ml in my bladder.
After each event, I have to wash -- sometimes I soak in the hot tub -- and change the sheets or at least put a towel over the wet spot. I find it difficult to go back to sleep -- eventually I may doze, but REM sleep is rare.
Today I met with the chief of urology at Hopkins, Dr. James Wright. He specializes in incontinence issues. he sees a lot more stress incontinence with men after prosectomies,but also sees the occasional neobladder patient. He is willing to consider adding an artificial urinary sphincter, or AUS. It's a 90 minute procedure, followed by six weeks of waiting for the body to heal and adapt to the cuff over the urethra, before it is activated. He has a 4 week wait before he could do the surgery. We talked about my planned Europe trip with the family, and he'd prefer waiting until after that trip before doing the surgery. He wouldn't want me somewhere in Europe a couple of weeks after the surgery, and have some complication.
We discussed how an AUS would work. I've blogged about this before. Essentially, an AUS has 3 parts: the cuff, a doughnut-shaped restrictor placed over the urethra; a reservoir of fluid that is placed somewhere in the abdomen, and a valve in the scrotum. The valve is squeezed a couple of times to force from the cuff into the reservoir, opening the urethra. In a couple of minutes, the cuff refills with fluid, closing the urethra. it lasts 5-10 years before it wears out, with the average being about 7 years. Parts can be replaced independently.
While I think about it, he gave me a prescription for Duloxotine. He said he's had limited success with using it to help incontinence, but he sees little downside to trying. I'll start that now and see if it makes any difference. If I decide to get an AUS, it probably won't be until August.
In the meantime, I'm going to meet next week with Dr. Michael Phillips, a local DC urologist who also specializes in incontinence, and get his views.
In other news, Unum insurance company has grudgingly agreed that I meet their definition of disability, and has started making payments pursuant to my private insurance contract. However, they are only paying about 50% of the benefits that the contract says would be paid. Half a loaf is better than nothing, but I'm trying to get all that I am due. I don't like doing battle with insurance companies, but avoiding paying money is what they do.
I have a client who is also receiving benefits from a Unum disability policy. While it was a bit of a struggle for him to receive the total annual benefit the policy states he should receive, everything was eventually ironed out. He now provides his tax returns every year to substantiate continued receipt of benefits and has only occasionally had any questions asked by Unum. Keep at it and you will receive the whole loaf.
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