Tuesday, October 23, 2012


Well, this has certainly been some year for me and my IC! I’ve written several times about my chronic UTI problem (13 this year so far). Last week at my most recent visit with my IC doctor (and discovery of UTI #13); we discussed yet again what might be contributing to this problem and what else we might do to help resolve it. My doctor believes strongly, and I have to agree, that my severe retention is one of the big factors contributing to the UTI’s. We agree I simply cannot let the retention go and not deal with it, so for now, he recommended – and I agreed – that I need to be self-catheterizing at least once a day and preferably 2-3 times a day. So that is what I am doing. He also suggested that, since I have two InterStim and they can help with retention (not just urgency/frequency) that I schedule a programming session to see if we could achieve some improvement with some different programs.  Now, my first InterStim was implanted in 2003 and finally died in 2011, so I got one of the brand spanking new, smaller InterStim devices to replace the old one last summer. The second was implanted in 2004 but last year showed plenty of battery life remaining so, we just replaced the dead one.

So, back to yesterday for my scheduled InterStim programming session.  My doctor has the most wonderful Nurse Practitioner that is trained to do all the InterStim programming and I just love her! She has been a blessing in my life this year, let me tell you! Anyway, we always begin by turning off both of my devices then turning one back on and start working on programming that one device until we get a good program. We decided we would begin with the “old” one first, then do the “new” one second. So here comes the “good” news ….wait for it …. “Old” InterStim is dead! So, the nurse said it looks like I will be having surgery soon to replace the dead one. In fact, I just received an email from the Nurse Practitioner that she reported back to the doctor and I’ll be getting the call in a few days to try to schedule surgery to replace my dead/antique InterStim. I told the nurse sooner rather than later as the schedule will allow. There are so many pieces to scheduling this – the Medtronic Rep has to be available, the doctor has to be available for surgery at the same time as the Medtronic Rep and then the O.R. has to be available on the same day too. I think we could schedule a Presidential visit more easily than this. As long as I have to do it, I’m hoping to get it done before the end of the year; the doctor is on board if we can get it scheduled! 

It’s been a bumpy ride this year – last year wasn’t so great either now that I think about it – but forge ahead I must and will do!  I joked with my nurse yesterday and asked her where the hidden camera was as this certainly must be a joke on me! But, no, this is the reality of living with IC; one must be agile and ready to switch gears on a moment’s notice and adapt to our changing situations. I will do this too. I’m choosing to look at this as a positive and perhaps a reason for the increase in my retention. If replacing the old/dead InterStim can help the retention, which then helps cut back on UTI’s, sign me up ASAP!

P.S. Got the call - Surgery is scheduled for Monday, Nov. 12th!

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