Once again it is always something

14 years 2 months ago #30159 by Cynthia
Replied by Cynthia on topic Once again it is always something
Will,

As you know that is what happened to my other kidney our stories were very similar. They could not get it to open back up when they tried but again like you the damage was already done.

Thanks for the offer but we have the names of a few guys that do work with ureters doing laser. The point is that they often close up again and is that a game I can afford to be playing at this point? Each time the ureter closes it can do damage to the kidney.

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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14 years 2 months ago #30158 by SailorMan
Replied by SailorMan on topic Once again it is always something
Cynthia - very very scary stuff as I too have had a ureter scar over and even before this happened to you, I have wondered if (or when) the other shoe (ureter) was going to drop. The guy that my uro knows of is the recognized expert in repairing urethras, not ureters. He is in St Louis and I can get a name and contact info if you wish.

To the question about opening a ureter with a balloon like a Balloon angioplasty, I had that done to my left ureter because they could not get a stent through the blockage. To be more explanatory, they first had to shove a wire through the blockage because they cuold not even get the belloon in at first. Once they had the wire through, they put the balloon in and inflated it to open things up and then put the stent in. Sadly for me, the damage to the kidney was already done and in the end the whole shebang, kidney and ureter came out.
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14 years 2 months ago #30156 by sara.anne
Replied by sara.anne on topic Once again it is always something
Cynthia, you are an inspiration to all of us.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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14 years 2 months ago #30155 by Cynthia
Replied by Cynthia on topic Once again it is always something
Just thought I would update you all. As most of you know recuperating in a hospital let alone sleeping is a joke., so being home is great and I can feel my get up and go getting up and going again if slowly. I am off to Boston again today Dr’s appointment tomorrow and then on Wednesday they are going to try to run a line through the kidney and break through the scar tissue in the ureter and into my Indiana pouch to hold me over until surgery. This will also make it easier to find the ureter during surgery. The upside of this situation is that since they want me to have six to eight weeks to build myself up before they do surgery is it gives me time to study the situation and make some decisions. There are options but the question remains that with one kidney left and that one already damaged there is no margin for error, what is the safest thing to do? I will keep you all updated as time goes on but know that I am doing fine and am back at work (slower than usual) so if you need me I am here. I will try to be on our support chat tonight that we hold every Sunday at 8pm Eastern time.

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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14 years 2 months ago #30114 by LeeH
Replied by LeeH on topic Once again it is always something
Wow, look at all the stuff that happens when you don't check in for a few days.

Regarding the laser Cynthia, I don't know if it is the same kind of laser or if there are a multitude of lasers used for this or what but about a year ago, my Uro used a laser to clear up some scar tissue that reduced my urine flow. At the time he said said he was being conservative in the way he applied it. I was also told that some scar tissue could still rebuild. I was cathed for a couple of days after but it worked well. It may have been a new procedure because the salesman was there too.

It has been successful overall but there has apparently been some more scar tissue. May have to zap it again. Oh, I got to watch it the screen too!! :ohmy:
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14 years 2 months ago #30065 by Patricia
Replied by Patricia on topic Once again it is always something
OK..i sent off an email to Johns Hopkins
Mohamad E. Allaf, MD





Office: 410-502-7710
Appointments: 410-955-6100
Fax: (410) 502-7711
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
This guy repairs ureters at the junction where the ureter meets the kidney.....so i threw the question out to him about your situation. I figure one of the top uro hospitals certainly has done this procedure. I got nowhere with Cleveland Clinic on the net but i will call them tomorrow and i'm going to check with Dr. Gill at USC/Norris as he's one of the top transplant surgeons in the world and i'll bet he's heard of this.......so hang in there! I'll throw something at a wall in your behalf......
xxxooo Pat
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