My husband had RP yesterday and all went well. He came home today and that's where things got hairy. The nursing care he got, imo, was subpar. This is distressing because it was done at the hospital I work at. If I hadn't insisted, the nurse would have given us the urine bags and sent us home without any instruction except to "read the instructions on the back of the bag enclosure". She didn't know what she was doing and had to get someone else who said that the leg bag could be strapped to his thigh. the instructions showed the bag attached to the calf, but she insisted it was fine. So home we go, and he was pulling his loose jogging pants down and some of the catheter got caught and a small portion slipped out. It did not come out all the way as the balloon is supposed to stop that from happening, and there's no urine leakage at all. I'm so pissed, because had they attached the bag to his calf, as I suggested, he could have just lifted his pant leg and emptied it without risking tugging on the catheter. Now I'm worried. I'm going to watch to make sure the bag is still filling with Pee, and if not then I'll call the on call urologist. Of course this would have to be during a holiday. This whole experience has been terrible because of the lack of knowledgeable nurses taking care of him. We ask lots of questions, but get so many varying answers that it's confusing. Has this(the slight slipping of the catheter) ever happened to any of you and if so what did you do?
RP surgery yesterday: My husband had RP... - Prostate Cancer N...
RP surgery yesterday
I can't answer our questions, but 1) thank goodness you're around, and 2) they should have given you a number to call if there were any problems and you should use it and anything else you have to until you get the answers you need. They let him out of there pretty quickly and they owe you some help.
I had CyberKnife for my prostate cancer seven years ago. For my bladder cancer after each surgery, 3 in 4 months, I had the bag on my calf the entire time I had the catheter. I had no problems at all. My pre op and post op care was exceptional from Sloan Kettering. Prayers for a Speedy Recovery.
Thanks so much for the responses. All is fine. We switched to the overnight bag and he prefers that to the leg bag. The catheter stayed in place and is working fine. I think we just panicked. Luckily, I have a friend from work who is a great nurse and she eased my mind and gave me some advice. I think the bag on the calf would have been ideal had the nurse known what she was doing, but honestly, he was in no shape to go out in public, so he didn't see the need to change from leg to overnight bag every day. Less chance of infection and less emptying of the smaller leg bag. Hope everyone had a great Thanksgiving if you celebrate it.
After my surgery, I used the overnight bag most of the 8 days I had a catheter. I put it in a plastic bucket with a handle when I would go out in the yard. It looked like I was watering flowers and none of the neighbors knew any different. The smaller calf bag fills up pretty quickly and can be difficult to empty when wearing slacks. Biggest problem I had was the adhesive clamp that holds the catheter to the thigh started coming loose and I had to use surgical tape to keep it in place. I was terrified it would pull it out when I rolled over while asleep. I think they could provide a few extra adhesive clamps considering the $100,000 cost of the surgery. So far, so good!!!
I am so sorry that this happened to your husband. None of us are here on this sight willingly. We ended up staying in the hospital until the docs were happy that I had no internal bleeding. I ended up having the bag on the inside of my thigh. Wearing sweat pants made that an easy thing to do, also much easier to drop the sweat pants down to my knees to empty the bag. I never changed from one bag to another. I also would fill the bag with bleach (after emptying the pee) and let it sit in there awhile before rinsing it out and putting it back on my leg. The catheter came out 10 days later. It took me 3 months to learn how to pee again. Once your hubby gets to that happy place (being dry all of the time), he will not look at a bathroom with quite the same nonchalance he had before RP. Men are used to holding their pee forever until it is convenient to use the bathroom. With his prostate gone, he has only the bladder to hold back the tide. That muscle is not used to doing much work, and is why kegals are so important. Now, an available bathroom should never be passed up. If he waits too long to go, he runs the risk of losing all control. That has happened to me exactly once. I do everything in my power to avoid that fate. If you have been to a restaurant and have had a lot to drink (water, soda, coffee, alcohol, etc) have him use the bathroom before you leave. While seated, he will not feel the urge, but once he stands up, he will.
I am surprised that he came home 1 day after surgery! Was it RALP? DaVinci? He should have been given instructions on how to use the leg bag, how to change to the large bag at night, and hygiene and cleaning of the connections when they change. I was fortunate to have a male nurse who just happened to be on duty during discharge instructions. He was very kind, helpful, and frank with the vagaries of using the strap-on bag especially. I was told to strap it to the thigh, NOT the calf, and that makes sense. I don't know why he chose the calf. From my experience, I think it would help for RP patients to get instruction from a male nurse about all this. It helped me tremendously, and he also gave me many alcohol wipes and gloves to use. It is tricky at first, changing the bag at night, getting all the connections right without spilling urine all over, and using the wipes to sterilize the area. You should definitely complain about the bad care he got. Fortunately, if all goes well from here out, he should be able to get the catheter removed in a week or 10 days. I hope your surgeon has made arrangements for him to get a cystogram before removal, to make sure the urethra has healed where the prostate was removed. It is a painless procedure.
By the way, why isn't HE involved in this (and/or other groups)? I don't get all these men letting their wives/SOs do all the work when it is their body.
The dr. Told him from the beginning that he would probably go home the very next day...2 at the most. Today is day 6 and he got a CT cystogram done and the doc pulled his catheter. said all looked well healed. Pathology came back from the surgery and Gleason stayed the same(3+4) and lymph nodes were clear. A complaint will be made because we shouldn't have to look up "how to videos" online. Luckily, it all went well after the original scare of the cath pulling out. He ended up using the overnight bag most of the week, changing to the leg bag yesterday to take a walk and today to go see the urologist. He put it on his calf, as the instructions showed on the package and he much preferred that than on his thigh. I agree with you on why isn't the one on this forum. My husband is someone who does not like anything medical, even when related to his own health. He wouldn't have even gotten a 2nd opinion if I hadn't insisted on it. His attitude was and is, 'get it done and over with'. Do whatever the doc says and I don't care to learn anything else attitude. I've been an xray tech for over 20 years and work in the operating room, many times with urologists, so I'm much more inclined to want to learn as much as possible about all things health related. Some people get overwhelmed with too much info. Not me and my husband knows that, so therefore, he's fine with me doing all the "research". I do wish he'd show more interest in what other men have experienced. But he's so very private and doesn't share very well. only 1 of his family members even knows he has cancer or that he had surgery!
The reason for the bag on the thigh is to make emptying it easier, including at a urinal in a public toilet. I always found it tricky to keep the velcro attached properly. I am sorry about your husband's disinterest in the sordid details, but, hey, he's the one who is getting the work done on! I am a retired medical librarian, so research on this came easy to me, and I probably take being informed more seriously than some others. Plus your husband is a "private" man. It is a very personal thing, the prostate, is related directly to sex, and can be humiliating for us men to go through a procedure that renders us with immediate and complete erectile dysfunction and change in sexual desire (or lack of), and even change in the appearance of the penis ("shrinkage" when flaccid due to cutting out part of the urethra that is near the prostate); and of course some incontinence and having to wear a pad "like a woman." In about 50% of the "nerve sparing" cases, some potency can return, but it can take months or a year and then require Viagra or the other drugs to work.
How fortunate that you are in the medical field and can do his "due diligence" for him.
As far as the online prostate groups like this or on Facebook is concerned, they can be almost as scary as helpful. I see many with men who are facing chemotherapy, salvage radiation, and the like, with metastasizing disease. It makes me thank my luck that I am cancer-free so far (since Feb. 2017). Still, I face the now annual PSA test with a little trepidation each time. Even today I am awaiting the latest test, hoping for continued "undetectable." But prostate cancer (like others) is insidious and is not always the slow-moving benign condition that the media make it look like. Men are dying from it every day. Your husband is fortunate that they caught it before it spread, hopefully. Best wishes. You are certainly an angel to this guy!
Was curious how your husbands first PSA levels were? My husband had his RP 10 days ago. The pathology wasn’t what I had hoped but trying to find hope in the experiences of others as we wait for the next treatment plan.
His original psa was 11.4. He will be getting his 3 month post psa at the end of this month. Good luck with all you're going through.
Need advice/experiences re:incontinence post-RARP at 76
Post RP Questions...
Concerns after RP
Newly diagnosed, surgery next month
