Thank you very much.
I have one question and I will explain fully my circumstances before asking the question.
I have always been very healthy and never ill in my life. All of a sudden last Feb 2016 I was feeling quite ill. It turned out I had a very large stone blocking my right ureter, I had an emergency nephrostomy and after some investigation it was found my left kidney was basically non functioning, with the right ureter blocked my kidney function was next to zero.
I had a stent inserted with great difficulty to by pass the stone and my kidney function returned to close to normal, creatinine level of 140, it had been at 400 when I entered hospital. A few months layer I had the stone removed by laser and was finally back to near normal.
I have had a succession of out patient visits etc, and in April this year my creatinine rose quickly again, I had a stricture in my right ureter, basically the ureter has collapsed. I had another nephrostomy and several failed attempts to fit a stent, both ante and retrograde, I have had a nephrostomy for three months now.
The second blockage in April did a lot of mechanical damage, I had gross hydronephrosis, my right kidney became swollen and I am told like a balloon, you blow one up and it goes baggy after.
I have been referred to UCH for reconstructive surgery and will go on July 17. The potential reconstruction nvolves taking a flap of bladder and creating a replacement for the ureter, it's probable this would require moving the kidney, and it's also possible that they may take a piece of bowel to bridge the gap between kidney and bladder. This bowel use greatly increases the risk of infection, the whole thing is considered major surgery, and there is no standard operation, it's open up and see what we can do!
Finally, my question is, as I am probably on the way to transplant (according to my consultant maybe one year away to meet the criteria) should I live with the nephrostomy and associated bag, saving the necessity for two lots of major surgery, or should I just have both procedures?
I wonder if anyone has had similar or heard of anything similar?