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Newbie: Neo-bladder w/lots of setbacks

2 years 9 months ago #50836 by GKLINE
Hey buddy
You are going to be fine!
Good attitude.
Good team.
You are going to be a fantastic recovery patient.
You need to be here to help others with your story.

I look forward to hearing from you in the future

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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2 years 9 months ago #50835 by Alan
Love both of you guys even though I haven't had to go through with a replacement. I still read all of these forums and learn so much. Most importantly about living! Thanks.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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2 years 9 months ago #50834 by resonut123
Thanks George.
It's true I have had a lot of experience with the complications after the surgery.
I have an AMAZING wife who keeps me positive (she found this site for me) so that helps tremendously. Thanks for the leakage notification, I thought that it would get better with issues now and then.
You have a good sense of humor and I try keeping my humor as well.
It can only help.

I'll post more later on my progress.
The following user(s) said Thank You: Alan

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2 years 9 months ago #50833 by GKLINE
Hello and welcome.
All I can say is we need you here to help others. You are the perfect example of "been there.... had that"
You can answer everyone's questions because you have first hand knowledge of every bad thing that can happen after being diagnosed. Whew!!!!!

But on another note.... You have been thru the ringer and back. And that wears on a person. I am sorry that you had to go through all of this. Yes hospitals are the best place to find infections and you had them all. I have a friend who had a similar experience and he spent months in the hospital with various infections. He thinks I am his inspiration, but he is really mine. He is always positive, even after so many complications. You are the same. I can feel it in your post, that you are just letting off steam, but are being realistic too. Good for you!
The only thing I can assure you about is the incontinence thing. You Will Have It! Oh yes! You are going to leak. I still leak after seven years. The good thing about that is that you know you are going to be find. Us neo bladder guys have one thing in common. We leak. And after all that you have been thru, that is a small side effect.
I wish you the best with the tube replacement. Hoping for a smooth transition. Maybe this is the beginning of a normal recovery from now on. I truly hope so..

But in the end there is that leakage issue. Depends are like Doritos..... They make more every day.
Keep your eye on the prize. Stay alive and be an inspiration to all the scared people who come here who feel helpless. You are going to make it! And all its going to cost you is a funny little watering problem..
You sure in good company.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]
The following user(s) said Thank You: Alan

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2 years 9 months ago #50832 by resonut123
Thanks for the welcome Cynthia.
Yes, I have had plenty of health issues overt the year and 3 months so far.
I did end up seeing an infectious disease specialist and we came up with a plan to HOPEFULLY curtail the infections (which seem to be because of the kidney tubes.

The plan is: a week before surgery - have a urine culture and I am taking Bactrim antibiotic & Hipprex pills twice a day plus one a day of Cranberry extract. Of course they say there is no guarantee- but hopefully it will help!

I get the kidney tubes changed every 6 weeks and am due again on March 24th.
Hope it goes well, because sometimes it hasn't !!!

Thanks again.

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2 years 9 months ago #50831 by Cynthia
Welcome to our community. Wow you have been through the wringer haven't you? Everyone's journey if a bit different but yours has had more curves than most. Most get lucky and seem to just do the routine thing and come out the other side quickly. I can say that while mine was different than yours it had its curves also. I have an Indiana Pouch and that is different than a Neo but they both have to be trained. I can remember having some discomfort when clamping mine off while training but nothing much if you have a lot talk to you're Doctor. If you continue having a lot of infections have you thought of seeing a infectious disease specialist?
I can't help you with training your Neo but I know when you have been through a lot just getting moving and building yourself back up is very important. I think once your immune system takes hit after hit it take a while for it to recover.
I know this is not a lot of help I just wanted to say hi, I am sure others will chime in.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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