All tubes are out and neobladder is "activated"!

Preparing to have x-ray of my neobladder - to be filled with the liquid on the tray in the foreground.

Nice socks and slippers, eh?

   This is an x-ray of my neobladder. It's the dark mass (filled with the special liquid) in the center. Look closely and you can see the two ureters (long, dark lines)on top left & right leading up to my kidneys. There are also pins visible - holding things in place.

On Friday, February 5th, I had all remaining catheters removed and the neobladder was "activated".  I had an appointment at KU Med Center with radiology at 2:00 for x-rays -- to make sure it didn't leak. Once filled (which caused some mild cramping and slight discomfort in my kidneys) to capacity, they shot several x-rays and all was deemed leak-free. Great!

Next, I was off to meet with Dr. Holzbeierlein at 3:00. He was pleased with my recovery and said "now, the work begins..." meaning I have to "re-train" my brain to recognize how a neobladder feels when full and be able to completely empty it. He told me to expect all continence to return - but to be patient. "Give yourself one week and you should be fine during the day, and within six months, you'll sleep through the night and it will be as normal as ever."

For the first two weeks, I have to set regular bathroom breaks and go every two hours. The next two weeks, every 4 hours. At the end of a month I should be able to go when I feel the need.

Once he left, his physician's assistant, Debbie, came in to remove the catheters and teach me how to care for the neobladder. Debbie is what I refer to as "an angel wrapped in skin" - just a wonderful, caring and dedicated person.

Here is a demonstration of early techniques for removing catheters.

:)

Catheter removal is always something you want to happen, but the process is nothing I'd want to happen on any kind of regular basis. I took one deep breath in... and let it out slowly as Debbie pulled the Foley catheter out. Yikes!!  Ouch.  Yes, it stung more than I thought it would, but it wasn't torturous. The next step was to remove the supra-pubic catheter (draining from the neobladder through my abdomen) just to the lower right of my belly button. It's removal didn't hurt as much as the Foley catheter, but it left what looked like a bullet hole. Debbie put a simple sterile gauze bandage on it with bedadine and said it will heal up on its own. Two days later, and it's already closed and forming a scab. Nice.

So the neobladder is now doing all the work of my former bladder. I'm able to empty it and continence is fine - not perfect - but fine. In a week I expect it to be normal.

Here is a close-up of my neobladder.

Ha-ha!  Just kidding. But I think it does have this general shape.

For the next week, I have to self-catheterize twice a day. Debbie taught me how to do this and I did it successfully in the doctor's office on Friday. I've done it morning and night ever since. Contrary to the images and creepy thoughts that one would normally have (including me!), the process is not painful. Really. No one was more surprised than me how easy it is. Debbie gave me lidicane (spelling?) jelly to subdue the discomfort. It worked. The sensation is just weird - not painful. It's a very thin rubber hose. Once inserted, I have to inject sterile water and flush the neobladder (injecting the water and sucking it out with a large syringe) to keep it clean and ensure the urethra remains open and free of scar tissue. After doing this twice a day for a week, I do it once a day for a week and then self-catheterization will be a thing of the past.

So, being FREE of all tubes/catheters is wonderful! I can actually sleep on my side for the first time since surgery (17 days) and that feels great! Not having the uncomfortable tubes hanging out of me is such a relief I can't even tell you.

What I have to do now is lots of Kiegel exercises and regain control of body functions. I expect to have this accomplished within a week. I'm actually going to try to return to work this week and put in 4 hours a day and then full days the following week. We'll see how that goes.

This is me doing my Kiegel exercises.

More to come... stay tuned.