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Husband newly diagnosed

8 years 7 months ago #31363 by Patricia
Notice the person who wrote the paper at UCSF..and she has an email address......hmmmmm? If it were me guess what i would do?
http://nephrology.medicine.ucsf.edu/people/lynda_frassetto.html

and note all symptoms if you just happen to do what i would do!! :S
You know how those fellows or interns write down all that stuff that nobody reads????
Good luck........Pat

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8 years 7 months ago #31362 by nancikay
I am so mad! I typed out a whole long answer and it disappeared, said "code not correct" and then evaporated!

Anyway, first I said thank you!

Then I said I was in the process of letting Meng know, although his medical student did make note of the unusual bacteria. I want to make sure Meng definitely knows.

Then I said that Bob had been treated with 3 different antibiotics at once, and one was CIPRO which was the one the bacteria was sensitive to.

Then I said that when I called our local uro to have them add to our earlier note about the bladder relaxing drugs, the MA tried to argue with me because the culture didn't say "diptheria" so I had to tell her that the corynebacterium WAS diptheria. She said she would add it to the note.

Let me see, was there anything else? I am still studying the various drugs.

Pat, thanks for being such a wealth of information!

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8 years 7 months ago #31360 by Patricia
Really? The diptheria associated pathogen? Did Dr. Meng know of this dignosis?
Type D2 was originally identified as a pathogen causing chronic or recurrent cystitis, bladder stones, and pyelonephritis. People with prior urinary tract abnormalities or who have recently undergone urologic procedures are at highest risk for this disease and probably from an indwelling catheter....How long was his cath in?
UCSF has an extensive paper on this
http://emedicine.medscape.com/article/215100-treatment
His urgency could be due to the corynebacterium itself. Hope they've got him on the right meds??
Thats another first for me.
If Meng doesn't know about this do let him know.
Pat

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8 years 8 months ago #31356 by nancikay
Oh gosh, sorry.

corynebacterium

definitely a hospital bacteria. I hate hate hate the way doctors sort of chuckle---all of them---and say, "we don't see this one too often" but then leave it to the patient to figure it out. We will obviously have a discussion with our local urologist. This hospital prides itself on infection control and has a great protocol, at least up in the ICU where my Mother was for a couple of months. But obviously there's a problem somewhere within the procedure areas. I don't know enough about the bacteria to know if we should also be concerned that he had a spinal block for anesthesia--could that bacteria have been introduced into his spine (it wasn't but what precautions should be taken in the future?)

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8 years 8 months ago #31355 by Patricia
you never told us what "germ" showed up?? In the meantime read this for the appropriate drug to treat his urgency. You may well be more educated than the uro..
http://www.emedicinehealth.com/understanding_bladder_control_medications/page3_em.htm
Pat

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8 years 8 months ago - 8 years 8 months ago #31348 by nancikay
Updating our status here.

Had the second opinion at UCSF. Dr. Meng is really wonderful. He was completely on board with the treatment and from what he could tell of the pathology, but obviously the UCSF pathology report isn't back yet. Anyway, he's got a great bedside manner. If Bob's cancer were to progress we would definitely go back to UCSF for treatment but for now we'll stay local for all the BCG.

So here's the latest with my husband, who is extremely frustrated. He has SO much frequency...not so much urgency. What happens is that he gets NO warning and suddenly has to go. And if he's not at the toilet, he's incontinent. He's had two episodes of complete incontinence. Dr. Meng felt it was most likely a bladder spasm since the bladder is still healing. When Bob had the bladder infection (wait until I tell you what germ showed up!) they gave him ProSed which is used for bladder pain. His infection is gone based on two additional cultures done. So I am wondering if there is another type of medicine he could take to relax these spasms. He said today that there is no way he'll be able to do BCG because he doesn't feel he could even put a small amount into his bladder and hold it for 2 hours. So we've got to find a solution. I'll be calling the doctor tomorrow to discuss it, his first BCG is scheduled for Friday. My husband is a person who can and has handled a ton of orthopedic surgeries, but this is all completely different for him.

Also, should this discussion be in a different area, such as the non-invasive area, or is it more helpful here? Thanks everyone!

OOPS! One more thing. The staging of the tumors is TA with one being suspicious for T1, therefore they want to proceed as if it is T1 with BCG. And there is no muscle involvement.

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