Update- Once again Its always something

Cynthia, it does sound as if you finally found the right place to go for treatment. At least it sounds as if this guy knows what he is doing! And that is half the battle.

Will be keeping really good thoughts for you.

Sara Anne

As most of you know I have been dealing with a blocked ureter and with having only one kidney this is a real problem. I had planned to post before this but at one am Monday morning I started putting out cranberry juice instead of urine. So it was back to Boston and a check of my temporary plumbing job. Interventional Radiation took a look and decided that it could be because of trauma from them putting a tube into the kidney twice in less than a week or it could be a situation they will have to repair before removing the tube. The bleeding has become sporadic so I am in no real danger so it is a wait and see. The other issue is the stent is already clogged going into my diversion and they were not able to get it unclogged so it is the neph tube and leg bag until surgery.

The first consultation I had told me the best chance I had of keeping the kidney healthy long term was to convert to an iliot conduit. What really bothered me about this solution is they could not give me any reassurance it would help me in not having the ureter scar and block again even though it would solve the problem for the moment. Then it was looking into laser repair of the ureter. What I found out is that it should not be used on an irradiated ureter. It seems that the process can reduce amount of blood flow and that is the cause of the scaring to start with. Then a funny thing happened all the research lead me in a way back home. It seems that the surgeon Gary Steinberg of the U of Chicago that did my original Radical Cystectomy has published a lot on the management of ureter blockage due to prior pelvic radiation following Radical Cystectomy. He is going to attempt an open repair of the ureter on March 4th and if all goes well I will only be in Chicago for about two weeks. If it does not go well I will be there longer and will come home with an iliot conduit. It will be interesting going to sleep one more time not knowing what I will wake up to deal with but it is a chance to avoid what would amount to as another Radical Cystectomy. Please understand I will do what I have to but I have already given birth to that baby once and it would seem rather unfair to have to go through labor twice for the same child so to speak.

The bottom line to whatever solution I had chosen with this is a good lesson to any of us dealing with ureter blockage. The only chance to success once open or repaired will be a solid surveillance protocol. The plan is that once I am through this my team at Ma General in Boston will team up with a really good kidney guy and take a look at what is a complicated situation due to my reduced kidney function and find a way to detect any problems faster.

If I was an ungrateful woman I would complain that the road to a fix couldn’t have lead to a place that was warmer in the winter than Chicago but it goes to show you can’t have everything. I will keep you updated and thanks again for all your caring and support.