Joe Sixpack
Active Member
BTW Orrin, did you have to get a catheter at any time for this procedure?
If you are asking did they cath Mr. Happy NO!BTW Orrin, did you have to get a catheter at any time for this procedure?
Yes I was asking about Mr Happy! Thanks Orrin. I appreciate you taking the time to document your experience. I think a lot of us are interested in how it goes for you.If you are asking did they cath Mr. Happy NO!
A cath in my wrist that was snaked down to the prostate to place the beads but NOT in Mr. Happy
Orrin, would like to read an update on your prostate condition now that it has been nearly a year after your PAE.From my Dr.:
"PAE does not effect erectile function or cause dry ejaculation. The only effect it may have is to reduce the volume of ejaculate. This only happens in some patients."
WOW! What a journey. So, if I'm reading things right, somewhere in this process for you, you had a TURP...and it was done without your approval/knowledge?(perhaps I'm misunderstanding).Been meaning to update so here goes:
This is a long story and I will try to shorten it down:
Was having some lower back issues and CT was schedule.
01-18-2021 – CT scan. Scan identifying bladder stones and small kidney stones. Sent report to my urologist and asked input and suggestions. Office contacted me about having them removed on 01-29-2021. Based on my last similar issue (had stones removed bay same DR a bit back) I felt comfortable going forward and have the procedure done.
01-29-2021 - I had bladder stones removed once before and when I woke, I was discharged and took my designated driver out to eat. This time a woke with a foley cath and leg bag and the nurse giving me the large HOSPITAL bag to use at night. Post OP instructions were minimal.
I used the HOSPITAL bag almost full time and only once or twice did I leave my home with the leg bag. When I did it seemed to increase blood in the urine. HOSPITAL bag seemed to minimize somewhat the blood in the urine. Stayed home on sick leave till the next appointment. At no time did the urine get clearer than fruit punch color.
02-05-2021 - Afternoon appointment at DRs office to have cath removed. Leg bag CLEARLY had a LOT of blood still being discharged into the bag. Cath was removed anyway.
02-05-2021 – Around 1700 that day I was at the local Medical Center ER having the cath put back in as I was unable to pass urine. Advised to let DR know on Monday.
02-06-2021 – Back in ER AT AROUND 1730 as cath had gotten blocked and I was unable to pass urine again. Cath was flushed to remove a clot.
02-08-2021 – As I recall I contacted the DRs office and advised what had happened over the weekend. I was contacted and advised to keep the foley in and come in to the office on 02-15-2021.
02-14-2021 – Another trip to the ER in the afternoon due to blocked cath.
02-15-2021 – Arrived for my appointment with the leg bag on. I think the intent for this appointment was to remove the cath and the stent that was inserted at the time of the procedure that was done on 01-29-2021. DR looked at the bag and said he could not remove the stent as he would not be able to see it due to all the blood (my interpretation). Things got quiet after that as I asked what the way ahead was, as I still had a cath and there was still bleeding. There was no clear answer and I was unsure what had gone south and why.
I did mention to the DR that I had a phone follow-up with the DR that had done the PAE and he indicated that If I had been up in the Chapple Hill area, he could have done another PAE and might have been be able to resolve the bleeding issue (my interpretations). As I recall I gave the DR a copy of the PAE operative report so he would be able to understand what had been done. I was leaving all options open at this point.
02-15-2021, 02-17-2021, 02-22-2021 and on 03-02-21 – Questions posted on the Patient Portal.
Later that day at home (02-15-2021) I collected my thoughts and posted some questions to the Patient Portal.
No response.
I posted additional questions with no response.
I was getting very frustrated as I was still on sick leave from work and still had a cath in and NO clear idea of what went south or a way ahead. I did get a bit aggressive with folks DUE TO NO RESPONSE TO ANY OF MY QUESTIONS.
Due to lack of ANY response from current DR I did reach out to UNC to get on schedule for another PAE to stop the bleeding.
02-19-2021 – I became very frustrated sitting in my recliner with a hospital cath bag and NO responses to ANY of my questions and with NO clear resolution in sight I reached out to the local Hospital in the morning and indicated I wished to file a grievance against my DR. Hospital said that the DR was not staff to the hospital but they would relay my concerns to the DRs office.
Around noon I received a call from 2 individuals from the DRs office and they asked what my concerns were. I explained my concerns with NO clear solution to the situation at hand and my frustration at receiving NO responses to my questions that I posted on the patient portal.
DR finally called me at home that Friday (around 1730) and he was extremely upset that I called the hospital and that I had wasted 1 ½ hours of his staff’s time on phone calls. I explained my concerns about lack of information and NO responses to my questions and my concerns about solutions and any impact local solutions would have on the PAE that had been done. I provided him the name and number of the physician that had performed the PAE at UNC and asked that he, at least, contact him and discuss my current situation and determine any impact on the PAE based on what he had done and any future impact based on anything that he might be able to do locally to resolve the current situation.
02-22-2021 – DRs surgery nurse called and said that the DR could do another fulgurization on Wednesday to stop the bleeding. I asked if I would still need the PAE I had scheduled. The nurse said YES. I asked if the PAE would resolve the bleeding issue and would I still need a fulgurization. The nurse said she did not know. I asked her to ask the DR to call UNC and speak with the DR that did the PAE to determine if a PAE would resolve the issue at hand.
02-23-2021 – DRs office called and said that the DR had reached out to the DR at UNC that did the PAE and they both felt that another fulguration was need and could I be at the local Hospital Outpatient facility that Wednesday. I said yes. I then CXLED my scheduled second PAE based on the above.
02-24/25-2021 - Arrived with my designated driver expecting an outpatient procedure but the DR had me admitted overnight with a bladder flush till around 0930 on the morning of 02-25-2021 when the cath was removed.
DR said that it was apparent that I had lost confidence in him and that I needed to find another DR AFTER THIS. I understood that to mean that he would not see me or interact with me at any level once I was discharged that morning.
Discharge paper indicated NO follow-up appointment. I was discharged with minimal post op instructions on what to expect, such as need for pads and incontinence, etc. after having a cath in for a month.
2-25-2021 – CERTIFIED LETTER was sent to me stating that “the DR has terminated our patient/physician relationship and will no longer be able to treat me effective 25 Feb 2020, with the exception for emergency care only up to 25 March 2020”.
02-25-2021 TO 03-21.
03-28-21 - I started back on coumadin and will see what happens.
- Continued incontinence.
- Have to wear pads. Using approximately 15 or more Depend MAXIMUM guards per day along with Depends REAL-FIT underwear.
- At no time was ANY information EVER provided reference side effects, incontinence, timeline to get back to a normal condition, ETC. I had to figure it all out on my own.
- Still have NO idea if the incontinence will ever stop.
- Daytime urge and 10 or 20 seconds later urine is released.
- NIGHT - (10 or 11 till 6 or 7 in the morning) 2 or 3 times per hour and it seems more urine discharges.
- Day urge to urinate MUCH more frequently than at night but same short window.
- MINOR red blood DISCHARGE when theses urges hit has been reduced.
- Two conditions when urge hits:
- At times I still see small pieces of clout and very little urine discharged.
- Other times significant urine discharge as compared to 1 above.
I went back to work BUT spending as much time running to the latrine to change pads as I do at my desk now.
03-23-2021 – I had a 3T-MRI done at the Bush Center in Alpharetta GA. to try and determine what was hosed up.
Based on a quick look of the scan (my interpretations of what was said):
Prostate still completely engorged with leaked blood.
pooling urine in the urethra section that goes through the prostate.
May be some damage to the urethra.
May be some damage to the sphincter muscle between the bladder and prostate.
May be 8 to 12 weeks before things completely heal.
Then return for another scan and see what it all looks like then.
03-21 – Finally had an office visit with my NEW URO. He indicated that he had planned to do a scope and see what things looked like, but after reviewing all that had been done he said that was not advisable. I told him that I had seen DR Busch for an MRI and DR Busch said it would be 8 to 12 weeks for everything to heal and get back to normal before he could do another MRI. Currently the prostate was still engorged with blood, and the blood would have to be reabsorbed back into my body to get a clear MRI. NEW URO agreed with that. I was given a prescription for medication to help with the bladder spasms and it was agreed to set up a follow-on appointment in 2 to 3 months and then re-evaluate the situation.
03-21 – I also had a tele consult with a URO from UAB. We discussed my current situation and he agreed with both DR Bush and my new URO that we needed to wait 2 to 3 months for healing to take place and then see. I expressed my concerns to him about the possibility of damage to the sphincter muscle going into the prostate. I explained to him my dealings with incontinence and he said it appeared that the sphincter muscle may not have been damaged and my main issue now was bladder spasms. Reevaluation after 2 to 3 months to reassess my situation was warranted.
05-02-21 – Things seemed to be improving with less bladder spasms. Having enough time to get to the toilet to pee about 75% of the time. Still have about 25% of the time when I do not have time to get to the toilet. Still getting up every 1 to 1.5 HRS at night to pee. Seems to be getting longer between urges to pee. Use of pads has been reduced, but I still need them for about 25% of the time now.
Last week or so I started having fresh blood clots and bloody urine when I start to pee. Sometimes a lot of blood and clot at the start and other times a minimal amount of blood and clot. I stopped my blood thinner on 04-30-21 to see if that might eliminate the blood and clots and let wherever the blood is coming from heal. After about a week blood clots stopped and the bloody urine also stopped.
05-18-21 – Getting bloated during the day and seem like I am not voiding bladder completely as am out voided each time does not seem to be much. Less than a minute each occurrence. Still having strong urge to pee during the day and am able to make it to the bathroom most times (+80%). At night still getting up 7 to 8 times to pee. Same as the day if I get up when urge hits I can get to the bathroom before having to urinate into the pee pad most times. Have a follow-on prostate MRI scheduled for 9 June. Will ask DR S if enough time has expired for all to heal so a “good” MRI can be taken.
UPDATE 06-09-21 – Had early 0815 appointment with DR. Busch. Arrived and did some paperwork and they had me drink 3 bottles of water to get my bladder full. After the 3 bottles of water, and a short wait, got prepared to have an MRI. MRI finished about the same times as the urge to urinate was starting to get intense.
Went to the restroom and emptied my bladder as much as I could and then back for another MRI.
Completed the second MRI and back to the waiting room so DR. Busch had some time to evaluate the 2 MRIs.
Was called back to DR. Bush’s office and he went over the 2 MRIs with me. My interpretations of what he said were:
UPDATE 6-27-21 – Meds seem to help. Still getting up at night on average every 1 to 1.5 hrs. Some ability to “hold” urine back, but still have a small amount of urine that leaks out when I “hold back” to get to the restroom. Still bloating throughout the day, then slowly resolves in the evening hours as I urinate (bladder urine retention during the day?)
- It appeared that DR. X had performed a TRUP.
- The “before urination” MRI and the “after urination” MRI showed little change in the volume of urine in the bladder indicating that the bladder was retaining urine.
- Sphincter muscle between the bladder and prostate had a significant amount of muscle cut out to allow urine to drain freely out of the bladder into the prostate.
- The sphincter muscle between the bladder and prostate was now ineffective and did not function and hold urine in the bladder until urination.
- The secondary lower sphincter muscle downstream was doing ALL the work now.
- DR Busch asked about a clip that showed up on the Jan 21 CT scan. This was from the PAE.
- He again mentioned my large prostate and said he would take some time to further evaluate my situation and make recommendations on possible ways forward to at least remedy that issue.
- DR Busch provided a prescription for a prostate medication that he felt may help any issues arising from the enlarged prostate.
UPDATE 7-5-21 – Staring on 7-4-21 change in urination amount and bloating. Recent frequency has been on average 1.5 to 2 HRS apart at night but prior to 7-4-21 a significant amount of urine was eliminated at those times. Now minimal urine is released. It seems that I have started to “retain” urine, but release enough to eliminate the “urge to pee” feeling. I did have a very minimal amount of blood staining a few days ago. I am wondering if there is some plugging that is holding back the free flow of urine now. Has not got to the point that I have had to make a trip to the ER yet.
7-8-2021 – Had DR appointment with new DR. Issus of the last few days seems to have corrected itself and I do not appear to be retaining urine at this time. Appointment went well and will see DR in six months pending no issues developing between now and then.
7-24 2021 - Was peeing blood yesterday. Bright red with clouts at the start of the day. Seems to have resolved itself overnight as no blood or clouting seen today. Frequency same. Every 1.5 to 2 HRS.
TODAY (8-11-21)- Still getting up every 1.5 to 2 HRS at night to pee. Not wearing the depends but still use one pad a day to catch any leakage. Seem to be getting better verrrrry slowly and have no idea if I will ever get back to where I was at.
THOUGHTS - OLD Dr said he could not get into the bladder to take care of the possible kidney and bladder stones with out doing what he did (TURP). IF I had known that I would NOT have approved that procedure.
Original PAE was helping, but the UNC DR did advise that due to the size of my prostate a second PAE may be required. I was good with that and I would have done that again in a heart beat as opposed to the TURP.
My OLD URO apparently had no idea what a PAE was and the horrible outcome that would develop after doing a TURP.
Based on my experience with a TRUP I would never recommend that unless it was absolutely the last option on the table.
I am still considering my options and will see where things are in another month or 2.
To your questions:
1. Stream was getting better but one factor is size of your prostate (mine was around 200gms) and more than one PAE may be required for a LARGE PROSTATE.
2. Good news is that the PAE HAD NO IMPACT ON MR. HAPPY
Hope this helps...
Time for an update:Just wondering if the Initial PAE had any impact on the subsequent issues you experienced or do you attribute all those issues to a poorly performed TURP.
Ken
Time for an update:Just wondering if the Initial PAE had any impact on the subsequent issues you experienced or do you attribute all those issues to a poorly performed TURP.
Ken