Tuesday, June 27, 2006

Be Your Own Advocate when it comes to your Health.

I am going in to have my local doctor assess if I can have my Suprapubic Catheter taken out today. Oh how I want it out so bad. I want to be CATHETER FEE! Our anniversary is on Thursday. My Urine output is now mostly coming from the stoma with much manipuation of the 14fr catheter which I feel is too small for me. (My Surgeon in NY mentioned that I could use a 16fr if I wanted to but I want to double check with this local Urologist, so I don't damage the stoma tract, it may not have been meant to take that size on a regular basis.) I called my local Urologist to see how they want to do this and the nurse said she didn't know. Go figure, I am on my own to learn the ropes again! So I told her that the Suprapubic was supposedly coming out today and that the doctor was thinking about putiing a foley catheter into the stoma (so the Suprapubic hole does not leak as much and heals faster) and then I would have to wear the external bag again for a one to two days. This was the plan he made with me of last week. I asked the nurse if she wanted me to come to the office with a prepared wafer on, without the bag attached, so if he wants to take a urine sample while he's in there he can take a fresh one. And then we can put the bag on once the foley catheter is in place. The nurse said, Oh that's a good idea and a good plan. (I can't even imagine what it would be like if I didn't have any of my own supplies left or if I didn't call and were to show up with nothing, this office seems most unprepared) So that is how I am going with the wafer already on, bag, and any other supplies I may need while I am there. Oh and a change of clothing if needed. But I am hoping they will let me take my clothes off for this. They never pay attention to the urine that leaks out all over the place. I guess you really DO have to be your own advocate or else. It takes awhile to get the wafer in place and I'd rather be the one to do it than have a doctor/nurse who is not familiar with the way I like to have it put on. I have a certain method to my maddness when it comes to putting the wafer on and I KNOW the doctor and nurse would not do it the way I do and I'd have to re-do it when I get home and rip my skin off because I am so sensitive to the wafer adhesive and tape. I'd like to preserve my skin. I will also come with supplies to absorb any urine that may leak out of the Suprapubic hole. So I will go prepared and hopefuly come out with no suprapubic catheter, the external pouch and foley for 1 to 2 days, and then my Suprapubic hole will hopefully close up. I hope it works out similar to this. I am going to ask him if I can remove the foley since I've done it 10,000 times, so I don't have to go back into the city for another office visit but I understand if he wants to do it. I will also ask him if I can use a 16 fr catheter in my stoma when needed to drain all of the urine when the mucous happens to be too thick.

This teaches me some things: Always ask Questions, Always pay attention if you can, Always do your homework, Always be prepared for anything, All doctors do things differently, and Always be your own advocate when needed.

Keep on Going Kara!