Post by kilg0retr0ut on Sept 6, 2016 5:18:17 GMT -8
Been close to a year so I thought I'd update. The operation was a life changer, once again, this time for the better. I'm actually walking without AFO's, granted not as strong or as long, but I'm walking.
I'm so lucky to have worked with the many people who have helped make this possible for me. At this time they would like to operate on the other leg. To have that option is huge, but there is the cost, and I'm very pleased at where I'm at. What should I do? I almost couldn't pull myself up this last time. In other good news I made a deal with my Urologist , one year only cathing once in the evening, if I didn't show any signs of kidney damage, she'd agree for me to stop IC. So not only am I walking, Im only having to cath once in awhile. I don't completely empty but I guess close enough.
Well thats all.... I have to admit I feel guilty, why should I be so lucky. So many here have it so much harder, without the options I've had. Took me six years to get this far, so don't let the two year recovery window worry you, anything is possible.
hi kilgoretrout, question for u regarding the catheterizing, I only cath 1 a day because I don't completely empty bladder. I hope to stop cathing eventually, may I ask how much urine u do cath currently? I have approx. 200 ml when I cath in the bag and just curious what the amount is that's close enough for u so that u don't have to cath anymore?
Post by kilg0retr0ut on Sept 8, 2016 5:11:01 GMT -8
I'd stick with what the professionals say. I had many factors that led my urologist to agree to this. I've only had one UTI in six years, that was when I was sporting a foley. I don't remember the exact number, but it was under 200ml. I'm really holding much more than I should, I've been lucky. I had a ultrasound at my last appointment. I could tell they were having a hard time because they couldn't find my bladder. So even though they told the Doc there was Zero in my bladder, she acknowledged they were probably reading the machine wrong, then said I guess I'll give it to you. I know I had drank 3 or 4 cups of coffee that morning so I'd guess they'd get some kind of reading.
thanks kilgoretrout, as you probably know that the American healthcare system is pretty screwed up, my health insurance is subpar, my pcp is really subpar, so I have switched doctors and will see him tomorrow but don't hold much hope in getting good care. what I have done is managed my own recovery for the last 6 months, doing my own physical therapy and the only reason for me to have a doctor is get prescriptions when needed. was curious as to what led the drs to say "don't need to cath anymore" and was hoping that will happen to me sooner than later. I understand it could take years if it does happen. thanks for the advice.
sam I also retain about 200 ml in my bladder so I think it's important that you keep catheterizing. I think you don't have to catheterize if you body retains less than 50 ml.
I just want to add I still have to cath on occasion. My body lets me know when I'm not finished or there is still a pretty good quantity that remains.
Sam, what bothers me about healthcare are the doctors and nurses that know everything.
yes I hear ya, the issue I have been having with doctors is them not doing anything for me to help me, so I just say screw em, ill do it myself. more difficult but have never been patient.