new neobladder/difficulty with control

Posted by: bionic bladder in neobladder or pouch on Print PDF

I feel now that I am on the up swing.  I do feel I have had one of the top Urologist in the country.  So many surgeries to fix the fistula because he desperately wanted to save my bladder because of my age.  My Uro is Rodney Appell with Baylor in Houston and the surgeries were done at Methodist in Houston.  All except the hysterectomy and the first repair.  I am anxious to get the Urodynamics done next week to see what they find. I know that the bladder neck was spared during surgery and I have do have a sense of urgency but it just all falls out by the time I get there.  I have every confidence in my docs at this point, but am frustrated with the lack of control.

Bionic Bladder(jenifer)
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Patricia
March 28, 2008

Well you're right your doc is right up there with top uro's....I hope he finds the problem........Pat

Rockyiss
March 30, 2008

Hi Jenifer, I have had bladder cancer but still have my bladder. You wonder if you are to impient wanting to get going. YOU GO GIRL!!!  You do whatever you Dr says is safe for you to do and start to find some enjoyment in you life. You have had enough of the bad .Let your body tell you what it can take and don't get down on yourself if sometimes it is slower going than you want. I used to feel so bad because for part of my kids childhood I had to spend alot of time in bed. Then I read some school papers they had written concerning my illness, Do you know what they said, Alot of thier friends mothers worked and were to busy to talk to them but thier mom,(me) was always there to listen to them. My bed that was a bed of tears to me was a bed of safety and refuge to them. They always knew they could crawl into it and get love and support from me . Now that they are grown up we laugh about my kingsize bed. You keep trying and we will keep praying for you to get better soon,    Rocky

bionic bladder
March 31, 2008

Thanks Rocky,

I have tried to keep a positive attitude through all of this, but some days it just gets the best of me.  I do get frustrated at my stamina level, but am trying to be patient with that and as everyone reminds me so often I am only 6 weeks out from my last hospitalization.  My kids are great and they have been so supportive and caring, although I know there have been times when they were scared to death.  I reassure them often and try to be as honest with them as possible still allowing them to have their normal childhoods.  I know one day all of this will make them stronger adults.  Thanks for your prayers, we never turn those down.


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