I called 5 local medical supply places in Charlottesville I found listed on the web. Every one of them had their phone number disconnected. I called my GP to see if they had any or could point me in any direction, and they did not/could not. The only places I did not try were the hospital and its satellite Emergency Care Clinic. Regarding my PSA: it had been 0.04 for years and years, then 2-3 years ago it shot up to 0.49 and has stayed there. My urologist says it's no big deal. My most recent test was November 2021. I worry about the aggressive form of prostate CA that comes with a low PSA. We'll see what the guy says this morning. The only CA symptoms I have are the 10# weight loss (which is likely due to my drastic reduction in cookie consumption) and inability to urinate (which really feels like a urethral blockage.) My urologist removed a bladder stone just about 2 years ago. I wonder if there was scarring done then.
It seems that my bladder is shot. Expiry Date Code 20220729. They yanked out the catheter and did a cystoscopy (looked all the way up into my bladder with a camera), and found nothing that was even partially blocking the flow. He thinks an intermittent valve may have caused the halting sensations I felt in my urethra. My doctor asked if I wanted to do another urodynamics just to make sure of the diagnosis, but I nixed that idea. When this latest inability to urinate began 2 weeks ago, I only happened to notice that I had not "felt the urge" in a while, and the stream was weak when I went. That lack of feeling any urgency when I am full is not caused by a blockage. In a sense, I'm not surprised. My retention issues/frequency go back at least 15 years. I was just unaware that there was an end-of-the-road to it...I thought I could limp along the rest of my life like this, if I chose to. My doctor asked if I wanted to talk to his prostate specialist to see if there is anything there to get marginal relief, but the urodynamics I had done earlier said that the prostate is a very minor contributor (5%) to the retention issue. Today's cystoscopy pretty much confirmed that's still the case. I may go in and talk to the guy, but it would only be valuable for incremental data-gathering regarding my options...and I'm not interested in having more stuff shoved inside of me just to prove what's already known. I already hurt plenty. So my options are: 1. Be perpetually catheterized the old fashioned way --There are lots of downsides to this. It gets replaced every 30 days (followed by a day or two of discomfort), but mostly it inhibits both a decent night's sleep and my ability to do any work around my property because of this uncomfortable sensitive thing always hanging out of me. 2. Self-catheterize forever --I thought maybe I could wrap my head around doing this to augment my weak bladder, but there's no way I can do this the number of times a day required to be my sole method of emptying my bladder, regardless of where I may happen to be at a given moment. 3. Supra-pubic catheter --This is a catheter (tube) that stays in the bladder and exits just under the abdominal muscles. It has the same options as the old fashioned catheter: attach it to a collection bag, or keep the end plugged and periodically drain the bladder directly. Just like the old fashioned catheter, it gets replaced (every couple of months), but apparently it is not an uncomfortable intrusive thing. Installing it for the first time is done under local numbing or a light general anesthesia. My doctor outsources this to a radiology clinic. He says that doing it in his surgery center makes a bigger ordeal out of it than sub-contracting it out to those who do it routinely. I'm really leaning towards #3. I just need to do more research to see if there are any downsides I've not yet encountered. While my doctor did not raise this option, he was not against it when I did, and did not cite any downsides or concerns, excepting that if the tube gets removed and not replaced for a couple of days, the pathway to the bladder will heal over and you'll be starting all over again. But if that happens and the tube is gone, you got no way to get rid of the urine, so you'll be seeing the doctor or the ER long before 2 days pass. I find it interesting that if this option does not work out, just move on to a different remedy and the pathway heals up in 48 hours. You may be left with a tiny scar, but other than that the installation self-reverses. I want to make sure I'm not just taking the easy way out. But I'm sitting here for the 3rd time in 3 weeks feeling sore as hell again from what was just done to me, and I can't see a reason to repeat this every single month when there are equally effective more comfortable options available that won't trash my lifestyle. Dammit. I was not expecting this when I went to the appointment this morning. But at this point, it's just a matter of picking my treatment.
@John Brunner your story makes me so sad, just as @Beth Gallagher and @Faye Fox stories do. I think some of all of this can be traced to the demise of the Primary Care Doctor. When primary care was important, they coordinated with the various specialists and had a long term (usually) relationship with the patients so they could often even evaluate the impact on the families. They could deal with the side-effects of specialist treatment and report those issues to the consultant. That is all pretty much gone now and primary care has been handed over to PAs and NPs as not being important enough to merit a doctor. Reimbursement for primary care may not be adequate to keep a practice in business. When I had a Family doctor, he took care of our entire family and would head off problems and direct care to thee most efficient path, but he retired with the passage of Obamacare and went to work as a prison physician and I still miss him as someone I could turn to for medical advice when needed. I have known many men who have gone through life with a leg bag and grew to actually not mind it at all. I became a routine part of their lives and they enjoyed not having to worry about where the bathroom is. Some even declined to have it removed when it became possible to do so, as they had gotten used to the convenience. I have not personally known anyone who has gone with long-term suprapubic catheterization. I wish you luck with your decisions.
We are left with some very hard choices to make sometimes. I hope the one you decide works out best. Just do like you mentioned and investigate it and then do whatever you think is best. Good luck John and we're pulling for you.
Thanks, Dan. I don't know where to lay blame for all this stuff. I never really talked about the frequency of my urination when it first arose...it just kinda crept into my life and it never occurred to me to tell someone that a 2 hour drive involved 3 bathroom stops (that's my fault.) But there's always the context of what Life was like then. One would have thought that the 1990s urologist might have said something when I came back for my second collection jug, but we never got to follow up with that issue...those jugs got lost in their chain of custody, and I had only seen the guy to get cathed for a kidney stone, so we never hooked up again. I loved my prior GP...he was a nephrologist and this subject did not come up between us. So I'm kind of angry at myself I did not put this on anyone's radar screen early on, assuming that doing so might have mattered. I may have mentioned that after I went through the 2 urologists at UVA, I ended up with a nurse practitioner as my "doctor." She billed under some doctor's name. All of the documentation showed that it was an MD I have never met who rendered care to me. I mentioned before that she was the only one to read the intake surveys I filled out every single time I had an appointment, and that's partly how I got on this path, so it's not like the doctors are always on top of it. But you are correct in that we have been sold that PAs can render quality routine care and "General" Practioners are now 2nd Tier Tech Support. This was done in response to an anticipated shortage of doctors and not because facts led to that conclusion. Worker shortages in the healthcare industry have been around for a very long time...remember when America was accused of robbing Africa of its nurses? This stuff was being sold to us decades ago. (COVID was used to do further harm here.) That being said, many doctors these days don't listen. It seems as though they have a finite list of Defined Ailments and any symptoms you present that don't follow the Decision Tree get dismissed. I've been subject to it. That's why I'm currently with urology practice #3 and urologist #5. But I digress... I can fully understand those men who have found bathroom freedom to the extent they will not let go of the thing that enables it. My freedom is greatly diminished by the discomfort of the current method by which I've realized it (I cannot walk through stores without the thing chafing, not can I engage in many other activities for the same reason)...and this method has other negative side-effects (like my compromised sleep experience.) Now that I'm facing this reality and it's no longer a concept, I'm reading the S.P. cathing stuff with a different eye. It's not all unicorns & rainbows. I really need someone with experience to talk this option through with. I asked my GP if I would be working directly with the radiologist who does the procedures (meaning they have experiences to share) or if he is the gatekeeper. He said he is the gatekeeper, so I'm not sure those guys are anything but technicians. What really sucks is if this were a different medical issue, I would seek a second and a third opinion. But everyone [understandably] wants to do their own data-gathering. We're not talking the same thing as having an EKG taken or blood drawn. I just about screamed when the catheter were removed today and the balloon was fully deflated. But when my urologist offered the cystoscopy today, I bit the bullet and endured it just to "be sure." Since the guy made a visual exam all the way through and into my bladder (checking for errant stones) and saw no restricting issues, I'm not certain there is any other exam that could provide more data. That being said, I just may go talk to my doctor's prostate specialist just to get his take on S.P. cathing and see if he has someone closer to that field that I can talk to.
John, knowing you, you've probably already visited other forums about this. But just in case... CLICK HERE.
I didn't mean to say that the mid-level folks were bad, just that they have a fraction of the education and training that a physician has. As far as the "second jug" thing goes, your volume would have been reported ont he lab report--or should have been--so it is likely the the person reviewing the results just ignored that part of the report. Bad practice.
I find it's reassuring to "talk" to people who've been where I am. They will tell it like it is. I know you're facing a tough decision, John. I also know you dread all of it, but usually the truly awful part is temporary. We just do what we gotta do, and we are more resilient than we think. This is my favorite quote from the BC forum... "You don't have to be brave. You just have to show up." It got me through a lot of effed-up days.
@John Brunner Have you considered having your prostate and testicles removed? One of my friend's husbands faces the same ugly situation you do. His decision based on the advice of a world-renowned specialist was to have both the prostate and testicles removed and a possible rerouting of the urinary tract. The only problem is he cannot afford to pay $50K to 100K out of pocket since Medicare will not pay unless cancer is present and proven by a biopsy which will probably spread said cancer. Then chemo would probably precede any prostate surgery, so the original problem doesn't get fixed until tens of thousands are spent and months of needless suffering have transpired. Lesser urologists encourage him to put in a catheter and learn to live with it. His rebuttal is that doesn't do anything for his super high risk of prostate and testicular cancer. Whatever you decide, get it done before you reach 70, because once you are 70, urologists don't want to do any surgery. They figure if you get cancer that you have 10 years left before it kills you, so be thankful you made it to 80 or into your 80s. I am reminded of Frank and his battle with kidney failure and dialysis which Medicare dictates how, when, what, and where treatment will be received. Quality treatment means big out-of-pocket expenses. Last I heard, a few months ago, he was still alive but not happy about it. Beth has it right that facing such treatment or surgery doesn't require bravery, just showing up and making it into the room where they prepare you. The only reason I wasn't scared poopless was because of the two colon cleansings within two weeks of each other before surgery. It is sad what the medical profession has become and quality treatment is based on having lots of money to spend or waiting till you have cancer before anything is done.
It's advice like this that caused me to divorce my first wife. Yup. Fear & pain of your current condition is always a great motivator. I'll be making a decision real soon. They want to replace the catheter every single month to avoid infection and blockages. I feel so bad for Frank and for others who suffer much much worse than I. This is the only [known] health issue I've got, and it's a purely mechanical thing. I could thrive as others have merely by enduring the monthly discomfort, or by other available means.
So as I'm reading more about this procedure and what led me up to it, I'm getting angrier at the doctors. I had one place tell me that self-catheterizing might get my bladder back to normal, but I've read lots of cases where folks have been self-cathing for years and not a single case where it "made things better." The next two practices spat on the ground at that advice and said "400ml is not that much. I've got patients who have carried around a lot more than that for years, as long as you can tolerate the symptoms." At no point was I told that this was a downward spiral and there's a chance I'd just wake up one day and my bladder function would be completely gone. Heck, when I started taking Flowmax, a lot of the urgency went away. I was able to go shopping and not be perpetually seeking the bathroom. Now, there's nothing I've read that says there's a fix for retention caused by weak bladder muscles. And it likely would not have made any difference...every patient is different. And as I said, I've had this gone untreated for at least 15 years, so it's really my fault for not realizing it was more than just a lifestyle-impairment thing. But not one doctor prepared me for this possibility...no one even mentioned it.
Of course I'm not in your situation, but I have to think I'd at least try the self-cath thing. A lot of people have to do that and are comfortable with it after a while. That's the simplest and most straight-forward solution to my way of thinking.** **Said the woman who refuses to wear a compression sleeve for lymphedema because it's "hot and uncomfortable...waaaaaah."
I understand, and I go back & forth. Here are the issues: -I've tried it and have major issues with doing it. I don't appreciate how snide the urologists are with me on this. -I would be stuck with that as my sole way of urinating, even if I were at Walmart/in a restaurant/on the road. --Can you imagine doing that in some of the bathrooms you've seen, much less just generally being out in public and trying to do it with someone banging on the door because you're "taking too long"? -When I'm outside working and gotta pee, every single time I'd have to come inside, scrub up and do "that." --The same applies if I wake up in the middle of the night and gotta go. -In order to "just try it" they gotta yank out the cath I've got in me now and then put it back in if things don't work out. THIS is a MAJOR obstacle.