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Father About to Undergo Radical Surgery

13 years 6 months ago #4669 by Patricia
Its not an early check-in to get the Go-lightly which your father MUST do the day prior to surgery otherwise he will have a bowell full of crap.....its done at home. If its not done you will not have a long wait at the hospital...it will kill your father.
That cancers been there a long time...it can wait a little longer. Quit being in such a rush to go to the wrong doctor in the wrong facility.
You're fathers going to need more than our prayers i'm afraid.............Pat

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13 years 6 months ago #4668 by harleygirl
I want to thank everyone for the stellar advice and support. I regret to report that I have had absolutely NO luck in getting my father into UT Southwestern Medical Center. The first available appointment is 4/23/07 and I can't ask my father to wait that long. No receptionist who answers the phone seems to understand the urgency of my father's situation. It's not that important to them. His surgery is 4/11 and in his way of thinking, the operation will be over by the time he could even get a consult at UTSW.

My brother called a general surgeon friend of his who told him that our urologist/surgeon is a good doctor and that my father would be in "good hands". I'm not so sure that this was not the Texas "good ole' boy" network at work where no doctor would speak ill of another. This surgeon friend of my brother's also told him that it is NOT unusual to just show up for the operation the same morning especially since Medicare won't authorize nor pay for early check-in. My father has had an EKG and chest X-ray and CT scan(s) ordered by other doctors for other things. Dad called the local blood bank to see about storing some of his own blood but they said it was too close to surgery date for someone his age. I think several of us are going to make a "directed donation" in his name, just in case.

He is walking 3 miles a day and building his strength. I contacted the stoma nurse at the hospital where his surgery will take place, and she suggested he come in pre-op for a consultation. However, that would require the doctor to add "education and marking" to the pre-op orders, and he did not do that. I told Dad that he has to call the urologist's office and request that he add this to the orders, but I'm not sure if Dad wants to deal with that part of the equation before surgery. And, based on the history we've had with this doctor so far, who knows if he would ever get around to amending the orders?

I've learned a lot through this entire frustrating process and, God forbid, if this disease (or any other for that matter) ever rears its ugly head again, I will do things differently. I won't be so nice and so patient and so easily put aside.

I plan to stay at the hospital all the time, as we already know what the level of care is where he will be after surgery. So, that's where we stand as of today. I think it's time I moved my energies to how to best care for Dad after the surgery, both in the hospital and at home. Please remember my father in your prayers as he faces this big operation and recovery. I will let you know how it all works out.

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13 years 6 months ago #4579 by ed_b
PLEASE cancel the April surgery. Neither you nor your dad want to spend the next 10-20 years wishing you had researched for another 30-60 days. Even though I reasearched, and I think my surgery turned out okay, there were nurses at the hospital trying to send me home with colostomy pouches instead of urostomy pouches! Take the extra time needed, feel informed and confident in your doctor, THEN, and ONLY THEN, your dad can tell you "what will be will be". Please, trust all of us here, this CAN be handled.

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13 years 6 months ago #4566 by Rosie
Harley, I don't know that much about Medicare but if Patricia is correct, you can get an immediate appointment for your father at UTSW. Let's stick to resolving the problem at hand and refrain from reviewing the past.
Facts as given by you: Not happy with inexperience of the urolgist slated to do the surgery. Not seeing an active urology/cystectomy program at the All Saints Baylor hospital. Lack of info on diagnosis of previous TURB. Not the best experience when in that hospital before. All that seems to point to switching to a experienced urologist/oncologist at a hospital medical center that has done many TURBs and Cystectomies plus the very neccessary vigilant care while in hospital at post op. Know that you can get an appointment at UTSW and it is not tool late to get the best possible treatment. Convince your father. Be confident and go for it. Rosie

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13 years 6 months ago #4562 by Patricia
Harley.....quit blaming yourself and do something NOW. Its not too late.
Everyone here knows you want a hospital and surgeon that does this surgery all the time....if you're on a site that the interest is primarily on lucrative prostrate surgery that isn't the place for your father. Pat

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13 years 6 months ago #4561 by harleygirl
I went to the Baylor All Saints website and nowhere on it could I find the word "cystectomy" mentioned. They mentioned prostate cancer and that they treat it, but never bladder cancer and radical cystectomy. This is the same hospital my father was in after his second TURB. The current urologist kept him there for 3 full days after the TURB. I spent a lot of time with him there, and it was fortunate that I did, as I had to constantly go find a nurse to empty his full catheter bag, find a nurse after 30-minutes of not responding to his call button, etc. And trust me, my father is a patient and kind man who would not criticize anyone, especially someone like a nurse who is overworked to begin with. BUT, he was visibly shaken when he learned that he will be right back on that same surgery floor with those same nurses who did not care for him very well last time, and this time with major surgery to recuperate from.

And, as you know, the Baylor system is made up of several hospitals, with All Saints being only one of them. So maybe some hospitals in the system are better than others.

The urologist that is treating my father has privileges at All Saints, obviously, but is not on their staff. He has a private practice and is not part of a university hospital/research setting. So, in essence, I guess he is just "renting" the operating room to do Dad's surgery.

I feel like I've wasted so much time. I was out of the country when this diagnosis came down. If I had been here, trust me, we wouldn't be having these conversations. I would have INSISTED that he get treatment at MD Anderson or UTSW, not from some guy in private practice who most likely does mostly prostate procedures. So, you can see now why I am blaming myself for where we are now.

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