by Cheryl in CT » Wed Nov 01, 2006 7:40 am
Dear Kidneygirl,
First of all, welcome to the KPG board - you've found a great place where you can share info and ask questions of others who are dealing with all sorts of kidney issues. We are not medical professionals, tho, and I think everyone here will agree that your doctor is the one to ask for medical advice. Still, hearing from others about their own experiences can really help, especially when you're trying to put what your doctor says into perspective.
I had to read your post a few times to make sure I understood what you were saying about the stents, because all I could think was whoa - something about that first doctor's determination for the long-run just doesn't sound right to me.... Nephrostomy tube, catheter & stent sound pretty much par for the course after treatment for diverticulitus, but I thought the stent was supposed to be temporary - just to help things while you healed from all the rest of it. At least to me, it doesn't sound as if "everything's okay" if they're talking about your needing a stent forever....
I admit that I have never experienced what you're going thru, but over the 4 years that I've been reading (and reading some more...) about renal issues, I've never heard of a "stent for life" that has to be replaced every 3-6 months! Wow, would that ever be a pain! (Lots of us here have discussed our "fears" about having ONE stent - either renal or urethral - put in and removed - I shudder at the idea of going thru all of that 2-4 times every year.) I would also imagine that just the repeated insertion/removal - and simply having a stent in place all the time - would prove seriously irritating and could even cause internal scarring, perhaps(?) I don't know that for certain, but it certainly sounds unusual to me. I know that in various circumstances (such as lower body paralysis) permanent stents are sometimes necessary, but even those don't need to be changed all the time.
Urethral reconstruction is a rather common procedure and is often done laproscopically (and perhaps endoscopically? - tho I'm not sure about the latter) While only your doctors can tell you if the reconstruction will help in your case, my point here is that it does not necessarily mean regular, open surgery.
Now, I'm assuming that the diverticulitus was the extrinsic cause of the initial urethral obstruction - is that correct? And was your loss of renal function a result of the initial blockage? Is your ureter now kinked, or what is causing the blockages when they try removing the stents? I think there must be something going on there that can be repaired rather than merely treated with all those stents.
If I were in your position, with known kidney damage already, I know that I would be looking for a 3rd and even a 4th opinion right now - I'd want to get this thing fixed before anything else went wrong! Is there a med school anywhere in your area with a really top urologist? If so, I'd be banging on his/her door for an evaluation. Have you seen a nephrologist, as well? With the 35% kidney function, I'd be looking for any way possible to maintain the function that's left and avert any further deterioration.
This all just my opinion, but I really hope that you'll keep looking for a better solution than that first doctor offered - I obviously believe that something more permanent can be done.
I'm wishing you all the best of luck in finding a solution and some more appropriate treatment.
Cheryl
(Connecticut/USA)