My Mom is having her bladder removed on 8/30/10

13 years 7 months ago #33513 by Melodie
Sheri,

Hope you checked out the thread by Abby, entitled "Faith"; she is in her early 70's and just got the ileal and seems to be doing very well and is active...she also had a good recovery following the RC. And then of course, you have heard from Rick...he is very active and the diversion doesn't seem to slow him down much. I think the real key, whether she gets an Indy or the Ileal is to find a very qualified doctor and then have good follow up care with a good stoma nurse. If you want to know more about the Indy Pouch, you can click on the link below my name which covers my experience.

P.S. Don't let those doctors rush her into an appt. if she isn't comfortable with his credentials or the diversion; she needs to feel as secure as she can about the decision before going into OR. May God bless you and your mom that you will make the best and right decision for her.

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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13 years 7 months ago #33493 by Patricia
OOPS..it appears i'm the one with declining mental capacity..time for my B12...didn't i just get one? Sorry Sheri got your mom mixed up with 90yr old Mom posted somewhere..heck i can't remember?? :blush: :S
Anyway those are 2 good vitamins to have checked along with other blood work being done. Always nice to know what the baseline is.
Pat

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13 years 7 months ago #33492 by sheri91360
Replied by sheri91360 on topic My Mom is having her bladder removed on 8/30/10
Thank you all for the wonderful advice. I appreciate your help and support more than words can express.
Sheri

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13 years 7 months ago #33490 by Gracie
I didn't see where it was said that Sheri's mom is experiencing dementia. Thank you Pat for reminding us that indeed deficiencies like B12 can be confused with signs of dementia.

Also Sheri, if this is something new (dementia) - depression can also make a person forgetful, disoriented, etc. Certainly the situation that your mom is facing brings with it a slew of emotional issues that can easily result in depression.

Gracie

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13 years 7 months ago #33487 by Patricia
Hi Gracie...i think it was Dr. Josephson at City of Hope or Dr. Chan
www.cityofhope.org/directory/people/josephson-david/Pages/default.aspx
over to the right of the page you can click on their biography.
www.cityofhope.org/directory/people/chan-kevin/Pages/default.aspx
But notice where they got their training...USC/Norris...that tells you something.
pat
And Sheri..if Mom is actually experiencing some dementia and its not a Vitamin Bl2 or D deficiency..do have her tested...then the ileal conduit is the best choice as the patient must be compliant and if she can't remember to empty it could be a disaster. Having the exterior bag at least someone would be able to care for her should the need arise.
pat

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13 years 7 months ago #33485 by Gracie
Hello Sheri,

I know this is a difficult time for you and your mom. However, I feel compelled to also encourage you to seek another opinion.

I realize that your mom is in the Kaiser system. Generally speaking, I am not a fan of Kaiser. They just do not have the best reputation in my opinion. (look at the disaster of their kidney transplant unit). They may not even know the options available. Just because a doctor has a good personality does not make him a good surgeon.

Your mom may not be getting the right information on the options available to her. There is such limited information out there that going to a cancer center with doctors skilled in this area is imperative. Pat gave you doctor information @ UC Norris and there is also City of Hope in southern CA. (Pat, do you remember the name of the doctor there?)

I had a cystectomy at UCSF and chose the Indiana pouch. This is a viable option in many cases.

I know there is a insurance question but I would think that a case could be made to Kaiser that this is specialized surgery that they may not trained in adequately .

I know this is a lot to handle. But as I have said before, the choice of who the surgeon is going to be will be the most important decision your mom will make.

I wish you and your mom the very best.

Gracie

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