In response to your questions:
You could always call the hotel and ask what is possible. Perhaps they have a place you can stash your bag. Just be sure to allow time to get back and forth. If you start at the Hotel you could take the shuttle but it is not always there instantly if they are on a run.
No - I am not aware of a place to stash you bag at the clinic. However, it would not be impossible to just carry it along.
Personally, I stayed at the hotel the night before.
Be sure to put the portal app on your phone. It is a very good way to get information (such as directions; appointment information; etc) and also to communicate with them.
Yes, the cystoscopy is unpleasant, but not nearly as bad as a biopsy. Be sure to look at the screen during the procedure and ask her to explain what she is looking at and looking for. That will make things a lot more clear and answer many of your questions.
Zero regrets!! I just don't understand why people wait so long to get it done.
In my 9th week after HoLEP with Dr Das at the Jefferson Hospital in Philly so I’m posting a 2 month update. I’d sum things up at this point as encouraging with some caveats. I am STILL seeing blood at the end of urination, but it is much less than what I had been experiencing. This is a fairly recent occurrence. Previous to this week, I had been seeing blood at the end of 90% of urinations as well as all bowel movements, however I did notice that when I have to strain for a bowel movement the bleeding is significantly worse. I have been eating high fiber cereal on a regular basis which has helped this a lot but at those times when I have had to strain, the bleeding was definitely worse. Now, for this first time here in my 9th week, I am going almost whole days without seeing blood. This is very encouraging (I do however still experience a wave of discomfort in my lower pelvic area at the end of urination as well). I have also noticed that my stress incontinence is significantly better. Instead of almost constant dribbles and squirts earlier, I now only have lessening dribbles, and no significant squirts. I am usually able to go all day with just 1 or 2 light shields. I do however never let my bladder get too full since the dribbles do seem worse when the bladder is feeling full. The dribbles also are a bit more severe the more active I am.
This leads me to my most bothersome current symptom which I’ll call urge incontinence. If my bladder starts to get full, and I happen to sit down, or be close by running water (brushing my teeth, washing the dishes, etc.) a powerful urge/wave will start in my perineal area and I will literally have 10 to 15 seconds to reach a toilet before it cuts loose (as in Niagara Falls!). Because of this, I am afraid to go anywhere without a heavier surge shield in place, and also have to make sure my bladder stays as empty as possible. I assume this is because my inner urethral sphincter is still far from healed and cannot contain the urine when the urge hits (and of course, even with daily kegels the outer sphincter is not equipped to stem the flow for more than 10 to 15 seconds according to what I’ve read). I can only hope this will improve as my inner sphincter continues to heal with time and more kegels.
I continue to sleep all night and go 6 to 7 hours without the need to go which is great, but when I DO get up to go, the previously described urge/wave hits me, and I have to run to the toilet. My flow continues to be excellent. So all in all I am encouraged, but continue to worry about the urge incontinence and only hope it will improve significantly over the next month.
I “urge”
Thank you for all your suggestions. I changed my travel plans. I didn't think it was worth the risk to miss my apointment with Dr. Miller, due to the flight being delayed. So I decided to fly in to Nashville the day before my appointment.
I will stay in Laquinta hotel at the airport. Rate is only $73/night.
Keep us informed with your healing process.
What does Dr. Das say about your problem with incontinence?
I have heard it can take up to 3 months for some people to get better. I hope you will dramatically see an improvement this coming month.
This is Don.1
You were 1 week ahead of me with your surgery so I am now at 2 months. My progress in the last 2 weeks has been very good. I switched to pads about 2 weeks ago and can go with just 1 all day and night. I drip a couple times a day with stress incontinence just a couple drops. Well that depends how active I am. Some days a little more. I see a little blood when I pee and most of the time it’s when I first start. Sometimes I don’t see any. I don’t have an answer for that except I’m on blood thinners. I sometimes have an extreme urge to go like you when I’m doing something when running water is involved.
It’s screwed up my bowel movements considerably. At times I go normally and times I’m straining my ass off. No pun intended. I take MiraLAX for that about twice a week and it seems to help.
I see progress so I can’t complain.
That’s all that I have for now. Good luck with yours.
I have a constant drip when standing or walking, not many issues when sleeping or sitting. I have resorted to wearing a penile clamp to stop the flow while travelling for work, if not I go through 5-6 pads a day.
Dr. Das indicated on my previous follow up visit that in 20 years of performing the procedure, I am only the second patient that he can recall that has had constant incontinence from the moment the foley was removed post surgery to post 3 months surgery. He really wants to try and correct it but I am quite wary of doing anything further surgically as the first bulking agent injection didn't work and quite frankly I am frustrated.
I am quite busy travelling for work so I really have been struggling with what to do moving forward. I have been doing kegels the whole time without much improvement.
I have no negative feelings towards Dr Das or Jefferson, in fact he his the best doctor I have ever encountered. I have come to grips with the fact that following the procedure a small percentage of patients have continual incontinence and I am one of those. It always could be worse, I am thankful its not CX.
As an eternal optimist, when warned of some of the complications of this procedure prior to having it done, I of course thought that i wouldn't have any problems! Just a thought to all considering this procedure.....
I will update after visiting the good doctor today.
Did you have your 6-week follow up with Dr Miller. How is everything going for you?
I will have my HoLEP surgery next week, I am little nervous about it after reading the experience Blayneb has had with incontinence.
Yes --- I had the 6 week follow up with Dr. Miller. It involved a flow test; a residual check; an interview; and labs.
I had deliberately not voided before the visit because I knew they would require a flow test. I voided 450+cc and the rate was off the graph.
My residual was about 40cc and I attribute that to the fact that I did not make sure that I was totally drained during the flow test and also I believe my bladder was quickly refilling due to having consumed a large amount of fluid.
The interview included all the usual questions. The doctors were surprised that I was Not at least dribbling a little post void.
My PSA came back 2.29 which was within the normal range but higher than what was expected. Dr Miller had said during the interview that she expected a value of 1 or less. I am a bit concerned about this but just have to be patient until my next checkup in November. Dr Miller said I should not be concerned and a trend of 2 or more values is much more useful than a single value.
Of note: She mentioned that any doubling of the PSA is considered an indication of cancer until proven otherwise.
Suggestion: When going for a follow up visit, have lab work done at Vanderbilt the day before the appointment so that the results are available during the interview. That is what I will be doing next time. This time the labs were done after the interview and so they were not available for us to discuss together during the interview.
A note regarding the incidence of incontinence post HoLEP: It seems that most people must expect some incontinence post-op. With time and effort it usually passes. Kegel exercises are said to help but inevitably I believe time is also a factor, as with time some of the prostate tissue grows back and helps to provide a bit of resistance to the urine flow helping the sphincter do its job.
The reason that I say this is that Dr Nicole Miller utilizes a special technique during HoLEP where she leaves a small donut of prostate tissue around the urethral sphincter. I believe this insulating tissue provides a bit of protection for the sphincter, from the damaging effects of the laser, but she also states that the reason she does this is to leave some tissue to serve as a bit of resistance against which the urine pushes, thereby aiding the job of the sphincter. As a result I have had no incontinence issues. On the other hand --- I am a bit concerned that with age I may once again experience difficulty voiding due to regrowth of the prostate tissue. But, Dr Miller states that should not be a problem since the tissue grows very slowly.
I also attribute my slightly higher than expected PSA to this small amount of tissue left behind, but I may be wrong.
So Sunshine: I suggest you go into this surgical experience with a positive mindset. I believe (from my personal experience) that you could not be in better hands. I believe that you will be very happy with the results. Even people on this forum, who have had some post-op issues, are still very happy that they went through with it.
What is your surgical date?