My thoughts exactly ! I read it, didn’t think it should have a like, and we don’t have a “send the poster a hug” option, so just felt bad for what you are going through , @John Brunner . Sending you prayers that you can get this whole thing rectified somehow. I wish you lived closer, we have the very best doctors here because of the arsenal and all of the NASA and military people.
I sit here wondering, what could I say that would help, not sure I'm familiar enough to help, and really sorry you're going through this, John. The only thing I have in common with this is, getting bad nurses and doctors, which I can relate to. I truly pray that you get a miracle, John, I will keep praying for you, and ask others to also. "What Marie and Yvonne, said is exactly what I thought too." "My thoughts exactly !" "I read it, didn’t think it should have a like."
I do understand the frustration with the sites, we put up but that's all we have at the time, hoping and praying one just may be of help to you. I took it off because the part of the research I posted it for wasn't in the link.
Have you heard about "permanent implant's performed at John Hopkins? Prostatic Urethral Lift (PUL). Minimally invasive treatment option that can open the urethra with permanent implants. Transurethral prostatectomy (TURP). The gold standard for treating B I figure Baltimore is closet to you, if you are interested. https://www.hopkinsmedicine.org/brady-urology-institute/
I posted this way back on August 5th (post 215), and since then got the biopsy reports, which showed only one sample with 3/3 cancer, the rest were clear. Doctor ask me to consider a cryo-therapy treatment, and I agreed, so we did that. (Family history of prostate cancer..) That treatment freezes the prostate to -40 degrees and is supposed to be highly effective. I woke up, though, with a catheder that I wasn't warned about, and it had to stay in a week. I am slowly recovering from all that, and the catheder was probably the worst part. I'm just sharing this because until I went thru this very minor process, I had no idea of the short and long term issues associated with urinary problems. @John Brunner you are certainly in my prayers.
Yeh, my problem is that my bladder muscles are shot. There is no treatment at this point. I am most concerned about my safety-valve ER saying what they did. I should have pushed back.
Thanks, buddy. That's good news. I was thinking of you and know I meant to ping you to ask how things went...maybe I let it slide since I figured you'd share whatever news you had when you felt like it.
@John Brunner like I said, Johns-Hopkins is not that far away, and if they cannot remedy your issue, I would consult with a nephrologist (generally smarter than urologists). For the urologist to tell you there was nothing that can be done for you is almost malpractice. I am sure that isn't the case, although the remedy might be about as bad as the problem. You could look into the procedure that @Marie Mallery cited above. A TURP usually stands for Trans Urethral Resection instead of prostatectomy, and I don't know how a prostatectomy through the urethra would be done but since your prostate is not the current issue.... I don't know if this would apply to you or not. Heart goes out to you.
I would cover all bases, and I think this one is closer to you @John Brunner , https://www.bing.com/ck/a?!&&p=2eb9...G9zcGl0YWwvcGF0aWVudC1jYXJlL3Vyb2xvZ3kv&ntb=1
First, welcome back! I noticed your absence...hope all is well. My thoughts went to your DIL's situation. I hope she is doing OK. If there were a way to get her my pureblood she could have it...I'm Type O (I think I'm O Positive.) Here's my current thoughts on this. Please correct my wrong-thinking/rationalization: -The urodynamic done by UVA objectively showed that my long-term retention was 95% caused by weak bladder muscles and 5% prostate. -When the current practice removed my bladder stone, he said he "Looked around" and did not see where any procedure on my prostate would be of benefit, thus confirming the UVA test results. -When the current practice had me doing a test where I drank water and held it in to make sure it was not backing up into my kidneys (via ultrasound), I retained 650ml after immediately urinating, then I would get rid of another 200ml after resting a bit and going again. My doctor said "Your bladder is not working very well" because of that. -When my bladder stopped working, there was no sensation of any urgency to go, I just noticed that I had not gone in a while (although there are still times I can feel it when things back up.) -I had noticed an interruption a few instances before things stopped entirely. I though it was a urethral stricture, but a cystoscopy proved that to be wrong. I now believe my bladder was taking its last breaths. I appreciate your not just giving up with your Hopkins reminders. But if my bladder is dead (and I believe it to be so), there's nothing they can do. I'd have to drive up there at 1AM for it to only be a 3 hour trip, and stay overnight for the next-day appointment. Maybe I should at least contact them and see if they can review my stuff. [I deleted my side-conversation regarding concerns over other stuff being injured by a partially inflated catheter. I've been cathed ever since with no real way to tell.] I will say that when the new SPC was shoved into my full bladder yesterday, I think the pressure pushed stuff out of me the only place it could go...there were a lot of blood-tinted splotches. Your thoughts are [as always] appreciated. My head goes to bad places sometimes because I have no one I can vet this stuff with (just a note of appreciation, I did not just make you responsible for me ) Having that ER doctor tell me to not come in for a "routine cath change" sure set me into a tailspin. I have an appointment scheduled with my doctor in a couple of weeks to talk about this stuff (although I've not told him what's on the agenda.) I have not seen him since August when he approved the SPC procedure...my catastrophic blockage at 5 weeks screwed up the Week 6 Follow-up. The upcoming appointment is for that follow-up and another cath swap, but the recent Day 25 blockage just obviated the need for that. At a minimum I need to bully him into letting me pick the nurses who can do work on me, if it's even possible to accomplish in their system. I'm willing to get this changed every 3 weeks for my safety and my sanity if a qualified professional does it...it's really benign when done properly. In the meantime, I'll take your suggestion and seek out a nephrologist. THAT should be an interesting journey around here. Maybe COVID has put a target on the back of my demographic and all of this is an effort to get rid of me.
John this is about you not me so don't worry about offending me as I'm not easily offended. Of course, you know more about this than I do but if I see anything that I think may help I put it up. I did the same thing for my mother and hubby, aka Jake. I really believe in as much knowledge or information as I can get when dealing with the medical field or most anything. I know hubby gets tired of me looking for new ways to treat diabetes or HP and PAD for peripheral neurotrophy which is getting worse in my legs. But chronic pain is a big one. So seems like that is what your dealing with now.
Nephrologists can perhaps give a different perspective on the mineral and organic deposits that are clogging the catheters. No guarantee they can do anything for you, but you are going through hell now, so it would be another direction to look. The Hopkins suggestions are again just a way to get another opinion. There are always other options out there, and I fear that if you don't arrive at some resolution, your kidneys may be compromised and you could end up in the same boat as poor @Frank Sanoica.