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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

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My story is quite different from most on this site, but it is the ONLY place I have been able to find anyone who has had their bladder removed and replaced with intestine.  In July 2005 I had a radical hysterectomy and had severe complications.  When I woke up in ICU I kept telling everyone my bed was wet, they said the catheter was just leaking.  A couple of days later the catheter was removed and I immediately urinated everywhere and their answer then was that the catheter had just been in longer than usual and it might take a few hours or a couple of days for everything to settle down.  I

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Hi everyone, thank you for all your kindness, I took my husband back to the hospital the next day and they put the port in. I was doing pretty good then I caught the creeping crud in the hospital and ended up pretty sick.
    I guess just having my own tur done and then this has left my body worn down. It is hard to keep it together when you feel so tired and sick yourself. I can,t evan walk like I do to get rid of the stress. I keep forgetting to set up my next scope . Thank you all again for  your kindness you are all in my thoughts. Rocky
 

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Hi everyone ,thanks for the good thoughts. It is diffuse large cell b type. They are doing a pet scan and bone marrow next week to find out more about the lymphoma.
  The oncologist had a fellowship in bone marrow transplantation at John Hopkins so she has to be on the ball I guess . She wants to start chemo now ! She said this is an agressive type ,but because of that it should respond to the chemo .
  The hospital discharged us at 9:45 tonight and we had an hour ride home, we waited all day for a port to be put in but the surgeon couldn't get to him , so it is now 12:30 and I am very tired

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The fourth instillment was very smooth.  I did a couple things differently.  First, I asked the nurse if I could lie on my stomach for a few minutes before leaving the office (to try and get the BCG up into the "bubble" area in my bladder early).  Once home, I followed my usual routine, but this time pushed past the "bladder spasms" as long as possible.  This was the first day that I had blood (not clots) in my urine, but it was only a very small amount.  I am realizing a pattern: soon after the treament (within the first two hours) I begin to get an unusual feeling in my nose, and begin to

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  Hi everyone,  Thanks for the quotes the mother t one gave me a chuckle.
  It is lymphoma, now they just have to figure out what kind . The leg is really swollen and the worst part is not having the time to do any research  (because it is acute) to find out where and who is the best to treat this , at least with my b.c. I had time to figure out who was the best in my area (John Hopkins). I got to come home for a couple of hours today while my daughter sits with my husband so I will start trying to figure it all out.
  The staff where he is are wonderful but the place is filthy !! They

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Wed., March 12, 2008, I finally ENJOYED my final BCG maintenance installation. Cysto follow-up (2nd one) scheduled for April 1st. All of my strange long term symptoms have disappeared since my last 3 BCG treatments where 1/2 dose, except for one new symptom. Now, when I have to void, it is instantly without warning, and accompanied by pain.

The 1/2 doses of BCG still yielded blood, considerable amount of tissue, and significant pain on treatment days. Ibuprofen usually was able to moderate the pain.

Take care all... :)

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Hey all!!

I just want to report, for the record, that my terrible, horrible arthritis which upstarted 2 weeks after my 9th (10th??) BCG treatment has completely disappeared.

I haven't had a Celebrex or Ibuproffen in many, many weeks. 

For those of you who saw the photo of my HUGE "sausage toe" (that is my Rheumatoligist description of the toe) well, the toe is completely back to normal size.   

I had the hardest time convincing my Urologist that this arthritic reaction was caused by BCG.  All I know is that it came on like gangbusters during BCG and now, 10 months later it is completely gone. I

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During the third instillment, I started to "loosen up" during the office visit.  As the nurse reached down to wash me off, I jumped just a bit and cried "OUCH!!"  After being started, she laughed, almost as hard as I did.  It took a bit for me to prepare myself for the treatment, but it helped build repoire with her.  She mentioned later that it is nice to work with someone who shows humor, and is relaxed during the visits.  This instillment resulted in an intense headache by evening.  I also found that I urinated much more often (I guess that is what they call "bladder spasms").  I went to

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Just when you get the rug back under your feet it gets jerked back out!!!
My husband had a mole taken off his upper thigh , it got alittle infected so the Dr gave him antibiotics to help it. He is now in the hospital with a blood clot in his lung. The scat scan showed a tumor in his groin and enlarged lymph nodes in his body. They are saying the're pretty sure it is lymphoma. Tomorrow they will do a biopsie.
    I thought it was hard to tell my kids about me , but their Daddy is their rock, he is never sick. I went to the Lord in prayer and he said , Trust Me.  he didn't say it would be fine

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