5-21-12/When Is a Damaged Ureter a Good Thing?

I was at Yale today and have potentially  good news.


First, they took off my urine bag and I can pee like a human being again – via genitals instead of tube in kidney!


Secondly, there may be reason for optimism.


My surgeon came down to clinic to speak with me today. He said he spoke with the Interventional Radiologist who performed the procedure on Friday, and read his report.


The bad news is both my surgeon and the radiologist are pretty confident there is no kink in my ureter. They are both pretty sure the ureter was damaged during transplant and is “narrow throughout” as opposed to in a section.


However, they are more optimistic than the evidence originally indicated.


In most cases the ureter is damaged and does not repair itself, it has been damaged beyond repair. The radiologist, from what he could see and feel, thinks there is a good possibility that I fall into the small percentage of people who have this problem (already a small percentage of people) where the ureter is damaged and cannot repair itself, but can repair itself with a little help.


My surgeon explained he believes now there is a 50% chance I need surgery, not a 70-80% chance. Much better odds. He explained that the radiologist was optimistic, but not necessarily confident, that the stent he put in would allow the ureter to heal larger than it had after transplant.


When they go back to take out the stent in several weeks, they will take images. These will show 3 possible scenarios:


1. The ureter has not improved/is still narrow – and then they will schedule surgery.

2. The ureter has grown, but is still not big enough. At this point, during the procedure, they put in a larger stent (which they cannot do initially) with increased confidence that over 3-4 weeks, that will make the ureter normal again. In this scenario I have to back for one more procedure, but a) that beats surgery and b) they go through holes/paths they have already made so the procedure is shorter, less dangerous, and therefore a little less painful.

3. The ureter is now normal size. If this is the case, I go on with my life.


In scenarios #2 and #3 – I will have to monitored for some time as there is still a risk (all be it a small one) that the ureter shrinks again.


Finally, I learned two other things. Most importantly, they definitely intervened before any damage was done to the kidney and this should not affect the long-term viability of the transplant. Secondly, if they do have to perform a second surgery, from the surgeons perspective it is not very risky or difficult. However, the reason it is crappy for me is that they have to cut through scar tissue around the new kidney to connect the ureter. The reason they don’t just attach your own ureter is the first place is that only “3-7%” of people have any problem with the ureter and that adds complexity to the surgery.


So, for now I am keeping my head high and my thoughts on other things. In the meantime, my creatnine is back to 2.0 – but my surgeon is not surprised. He thinks that will be my baseline (1.8-2.0). I am bigger than my mother, she, obviously is a woman and I am a man, and she is 2X my age. All these things can contribute to a higher baseline. However, even if it’s stable at 2.0 – it’s not a big deal. That’s a little high for a transplanted kidney, but  not alarmingly so or something I would ever notice. As long as the trend isn’t getting worse, they will be happy.

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