Well the cath nite mare continues. Do pretty good at nite ,get up empty bag wrap my self with paper towels relax and it voids more around the cath,then feel fine back to bed for 3 or 4 hours same routine . Been trying the leg bag during the day looks to be draining great and clear,but after about 1 to 1 1/2 hours full bladder feeling and it has to void around the cath then feel good for a while and the cycle starts again.
Did finialy get my uro nurse to call back uro says no to removing it ( I was hopeing for a few days / week with out it)as he's sure I will have bleeding problems again and will be harder to cath then. So I get to fight it over the weekend and go in to the Med center Monday they are gonna replace the cath,cant wait for that as it was a painful insertion before of course that was at the local ER by an ER nurse with no pain prep.They assured me I would have some pain help and another uro was there if needed.So my hope for the monent is pain help and a uro nurse or the uro will do the change and it will maybe work right .
Weather here is beautiful and there are all kinds of fun stuff going on here this weekend ,parades,carnival ,and lots of car shows and cruise ins. But here I sit waiting on the next past cath void. Im a old school hot rodder that has a very fast and fun 1934 Chevy coupe just wasting away in my garage,would give a dollar to be free of this mess just for the weekend.
Yep Im not having much success with the med system so far seems they just think of ways to slow it all down,but Im plugging away.If I could just get the darn cath problem working right I would be much happier.Other than it I feel pretty good . It has to be in right I would think or it wouldnt work at all. Maybe its too small and just cant keep up,of course an ER nurse put it in .The first time it went past the prostate but wouldnt go in the bladder ,so she got a differant kind cant remember the name and got it in. Of course the stuff coming out was so nasty plugging was a given,I can flush one now in no time. As I said it just seems like it cant keep up,then I get to what I have named the exposion,(pressure leak around the cath) after an explosion everything is fine for a while .The leg bag they gave me at the ER was bad from the factory,you could just barely blow air into it let alone have it drain. Just got a new one from the drugist today,seemed open and should work wore it most of the day enjoyed the freedoom it gave me but had several explosions ,so went back on the overnite one and so far ok. Seems takes a lot of pressure for the leg bag to let stuff in as compaired to the overnite one.The surgen Im trying to see is a bladder cancer specialist and highly recomended,also found out I have a shirt tale cousin that had my same deal and used this Dr Tarter for his care and surgery. Was out of the hospital in 6 days and has been doing fine for almost 2 years,seems like he's the guy I need. And I have 5 weeks before the uro can do mine so Im gonna do all I can to get with Dr Tarter.Heres a link to him ,he's the second on the list Thomas Tarter looks good to me. And the SIU Med folks are the ones that took care of my wife 10 days after diagnosis she was in surgery,so Im hopefull I can get him...
Grey many of us have wondered if we should be more worried about the stress from trying to deal with the medical system getting us before the cancer ever could.
Keep trying for the referral that is important. Bleeding with bladder cancer can come and go that is one of the reasons so many people are dxed so late. But it can come to the place that it needs to be dealt with quickly as blood lose can become an issue. That happened to me before my final TURB before my Radical Cystectomy.
I hope things can stay stable for you, hang in there and let us know what is happening.
By the way do not let things get bad because you don't want to go there. It has never worked for me I always ended up in more trouble than if I had just went. I never go to an ER without a book or my laptop anything to keep me busy and as patient as I get.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Well my bladder started bleeding and I was cathed in the local ER, First few days were tuff as I was passing to me a lot of blood and soft clots . So naturaly the cath would plug,flush it and be ok for a while . Ive had it in 9 days at this point ,and its running a lot clearer,and no plugging or clots for a couple days .Discovered needed to be vertical more and sleep sitting pretty much up in bed,seemed to help a lot. I now have a problem that my uro,and GP both say is bladder spasm's Im sure they are wrong. Cath is draining nicly ,but once in a while I feel like a full bladder and urgent need to void,go to the bathroom,hold paper towels around myself and cath tube and just relax,sometimes I can see it going down the tube ,other and most times it comes out around the cath,enough comes out soaks 2 or 3 paper towels.kinda wadded up.After feels fine ,happens sporadicaly sometimes it will do it every couple hours other times may go all nite or a day. Any ideas as both the Dr's just say spasm's,and other than them my only other option is the ER which is a nitemare ,went back there 3 hours after getting the cath ,it plugged . Got there at 9;50 pm and just sat till 11;15 then in a room and they didnt even flush it nurse or whatever she was said well I can see it in the line so its probably ok,shortly after it voided big time around the cath still no flush,at midnite the Dr came in poked my belly and said looks ok to me and sent me home . So Im not to wild about going back for help.Also doing a despirt try to get into a bladder cancer specialists care,as my Uro schedualed my surgery 5 weeks out ,I cant believe that 5 weeks and I have a cath cause Im passing so much blood my regular plumbing cant do it. Need him gone and in with the new guy , Course that involves referl,etc,etc,etc. Hoping to hear back tomorrow.