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My Retzius sparing RARP + NeuroSAFE journey

User
Posted 29 Nov 2019 at 15:19

Mad it home. Taxi to Waterloo then train from there for an hour. Quite a bit of blood in catheter bag so will now be flushing system with gallons of water which should settle it.


now some serious veg time after walking a mile back.

User
Posted 29 Nov 2019 at 15:32

Enjoy your recovery.


Well done!

User
Posted 29 Nov 2019 at 15:59

Just catching up on the news. Looks like leaving at midday was timely as terror attack just down the road from hospital. The other chap also having save operation  also made it out. Crazy stuff and massive respect to the public who tackled the situation before the police stepped in.

User
Posted 01 Dec 2019 at 08:49

Had a couple of issues over the last couple of days with blood in urine and maintaining catheter bag position. Turns out it was my fault/user_error :-). When I clipped the tube/bag in place and also fitted the adhesive fixing point and clip I didn’t clip the pipe in at the Y connector which fixes it in place. #n00berror. Once I did the blood in urine and soreness at end of penis have settled. Looks like blood was being caused by the Boldon in bladder stressing the bladder wall. This stopped when the Y-pipe was properly clipped in. Hope this helps others if they have the same issue.


Other than that the 500ml is quite compact so looking to upgrade to 750ml just so I don’t have to empty so often. Amazing how quick the bag gets filled when properly hydrating. Amazing how everyday things you take for granted change their dynamics with something like this. Thankfully temporary and the 12th is scheduled for removal and testing/tuning of the mk2 beta urethra gets road tested.


 

User
Posted 01 Dec 2019 at 17:05

TG


Easy mistake to make, 90 percent of photos on the net show the catheter strap not in the Y.  I have also come across a number of nurses on hospital wards who do not fit them correctly. You should have been told to empty your leg bag when it is between half and three quarters full, the longer you store the urine the more it smells and more to go into your shoe in the event of an accident.   I assume you have been given 2 litre capacity night bags.


 


Thanks Chris

Edited by member 01 Dec 2019 at 21:12  | Reason: Corrected name

User
Posted 01 Dec 2019 at 17:20

Hi Chris


Totally. Yes, have a few 2ltr for night bags to sup line to the 500ml day bag. Having a big of a headache today with blockage. I think caused after opening bowel and blood. Getting anything from 25ml to 250ml every 30mins after a totally stoppage for an hour between 3 and 4 today. Drank 3.5 pints of water and keeping active. Seems to be slowly clearing although variable. Just keeping up the efforts to clear it as took professional advice from the docs and they said if carries on it will mean A&E to be flushed. Spoke to a friend and ex doctor with a bag and tried reverse milking the pipe near penis and just walking up and down stairs and slowly improving flow and clots in urine which is positive. All good fun eh 🤔🙄😃

User
Posted 01 Dec 2019 at 18:42

TG


When I had my first catheter over five years ago you could hold the bag above the height of the bladder and let gravity push the blockage back, modern bags have a one way mechanism to prevent backflow. You could try lying down on your side to stop gravity pushing debris into the catheter. We have a saying  on here don't let any Tom, Dick or Harry change your catheter after a prostatectomy, your surgeon spent alot of time joining the urethra to the bladder.  Right approach keeping the fluid intake up, but if you stop draining you may need to get it flushed, I have never needed to get a short term catheter changed. 


Thanks Chris


 

Edited by member 01 Dec 2019 at 21:11  | Reason: Corrected name

User
Posted 01 Dec 2019 at 19:00

Thanks Chris


Will try the side laying thing. 

yes, keeping a steady stream of liquids going in. Now free flowing out but getting 100-200 per half hour.


will see how it goes and if need be get it flushed.


Totally agree ref flushing. If that’s needed will go back to London to the team that installed as don’t want the huge op undone by a n00b 


best


Simon 

User
Posted 01 Dec 2019 at 21:10

TG


Where did I get Rich from ? 


Thanks Chris

User
Posted 02 Dec 2019 at 09:05

Hey Chris


its cool, I work in IT so will add it as a Canonical name :-)


The laying on side suggestion was absolute genius as cleared very quickly. Back milking the pipe helped too. After these suggestions I was back to getting ~300-500ml/hr. Never before have I been so pleased to see 1.75ltr or urine by my bed in the morning lol


Time for my clexane breakfast and to switch to autonomous mode.


still amazes me I had major surgery last week as feel really good. Bowels online but obviously taking it very easy as mindful if stitches and internal wounds post Da Vinci.


thanks again for the amazing suggestion and help on here. Absolutely invaluable.


simon


 

User
Posted 02 Dec 2019 at 10:03
Can we now call you ‘Symantec’?
User
Posted 02 Dec 2019 at 11:26

Hahaha


still have catheter blockage issue but in touch with CNS at LB. I think ultimately might be to get flushed. Tried all the usual things and found pumping leg up and down gently from 90 degrees pumps urine through slowly like an old well. Taking 30min measurements so the drama is ongoing 🤪


update: resolved the block walking and raising thigh perpendicular to your body works well and seems to have for now opened the sluice gates. Picture ministry of silly walks 🤷🏼‍♂️

Edited by member 02 Dec 2019 at 12:02  | Reason: Not specified

User
Posted 03 Dec 2019 at 01:51

Originally Posted by: Online Community Member
Can we now call you ‘Symantec’?


I now call my night bladder suspended in the bucket on a stand - “The Matrix” 🤖

User
Posted 13 Dec 2019 at 14:14

Catheter removed yesterday morning at 11am. Little bit of a sting but the clinical nurse specialist (CNS) was gentle so all good. Statlock removed some hair like a waxing even with lashings of alcohol. 


Then onto testing continence. From the word go a could pee and stop/start with no dribbling. At intervals of ~20mins I improved slowly: 50ml, 100ml, 150ml, 200ml, 250ml. Then was scanned by the CNS and given the all clear to go home clad in an adult nappy and tena level 2.


Trip back included a 30min tube and then 30min train ride. I took a pit stop at every opportunity along the way. Unfortunately Paddington suspended all services when I arrived so had to decamp to Alternative Station. This meant ~90min journey so sat near a loo. About 35mins in got a twinge from downstairs indicating I need a pee. Then found all the facilities were out of order. Waited a few more stops and managed to hold it while sweating until located a guard and found alternative facilities in far end of train. 

Got to home town and made it home only to step in through the door and feel a warm sensation downstairs. I made a b-line for the loo and emptied plus dried up. 


After being pretty much normal continence all afternoon I noticed a fairly regular trickle of pee especially when laying on the sofa propped up with cushions. I guess this puts pressure on the sphincter below the bladder which is also battered and bruised plus urethra and penis pretty numb too after 15 days catheter. 


Trying to pass wind also pushed a small amount of urine out. Coughing, clearing throat and sneezing spring a small spurt of urine when on the sofa. Managed the leaks and drips through the evening and hoping this isn’t the shape of things to come. Re-read the profs notes and reassured that’s it’s quite common early days plus when tired. 


I geared up for the worse come bed time. Adult nappy back on with tena 3 and additional kitchen tissue adding extra buffer. Bed double waterproofed with absorbent tena pads to soak up anything during the night and hospital grade (waterproof) duvet and pillows in place.


happy to report during the night although I was up for a pee every few hours and catching the election shenanigans in the morning there were no drips or wetness so hard was a big positive.


This morning no issues until I sat on sofa in propped up laying position when I got a few drips. Plus when I needed to pass wind another small amount of urine emitted and caught in pads/kitchen roll.


im optimistic as can start/stop without issue and for the most part dry.  Hoping the leaks and drips are just as result of post urethral catheter swelling plus obviously the stitches around the urinary sphincter (which also feels sore when articulated). It’s a bit battered and bruised and hopefully when this settles in will have pretty much full control. From the profs notes the biggest gains are during the first six weeks in respect of everything settling plus stitches associated with the anastomoses dissolve as I think they hold the sphincter open a little until they disappear.


Onwards and upwards. Good to be fully autonomous now both night and day :-)


 


 

Edited by member 13 Dec 2019 at 19:54  | Reason: Not specified

User
Posted 13 Dec 2019 at 14:20

Quick update on histology. There was a question mark during the RARP on one side in terms of margin as the neurosafe picked up some suspect cells near that zone as the base and it was though might be close to capsule. In light of this the prof needed to take some of the nerves in one of the bundles to be safe. 


histology came back last week and found all nerve bundles, fatty tissues, margins, seminal vesicles and lymph vesicles clear of tumour cells. Capsule confined but Gleason was upgraded from (3+3)=6 to (3+4)=7 which was expected. Thus far looks like a good outcome as far as cancer can ever be. Always a risk of escapees I guess or the odd micro met but I am cautiously optimistic.


TG

User
Posted 13 Dec 2019 at 17:43

Great stuff TG,


It's great to see the back of that catheter. Keep making nice steady progress.


Kev.

User
Posted 14 Dec 2019 at 15:22

Another good night as only woke twice for toilet. Bladder was full and I could feel the ache on the sphincter. Woke at 8am was semi full bladder and held it while in bed for 30mins. No evidence of drips etc in pads. 


morning was dry. Changed to a tena lvl 2 and had a couple of dribbles when coughing. Did a few jobs around the house without issue then when making a late lunch and holding full bladder when I leaned over kitchen sink the seal gave way and let about 100ml go. Thankfully the tena lvl 2 + kitchen roll insert absorbed it. I’ve found this even before the op occasionally had a leak when bladder full and leaning over the sink so I guess partly this time due to healing/inflamed valve. Overall a marked improvement on yesterday.

User
Posted 18 Dec 2019 at 08:25

Hii am 4 weeks over a robotic assisted rp nearly the same as yourself.


 


Have found the kegel exercises really good - try doing them on 1 leg and them the other with the knee raised


I am pad free at mo but do have the odd accident particularly when forcing wind out


Haven't even thought about the Ed side of things because had a nasty uti when catheter came out - now that was pain


keep in touch


 


 


 

User
Posted 18 Dec 2019 at 12:00

Hi Mark


thanks for the top tip on kagels and will add that today.


definitely getting less leaky. No issues walking or sleeping at all. Just sitting seems to put pressure on the valve but would expect that to resolve over time.


i tried having a beer last night but too early I think as about threes weeks in. It just increased the leaks so will avoid for now.


passing wind in bed is fine no leaks much to the dismay of my better half :-)


So all in all very happy with progress and making steady headway each day.


Hope you have a fantastic holidays and get some quality time with friends and family.


 


TG

User
Posted 07 Jan 2020 at 17:20

Hello Mark, sorry to hijack the post. My hubby has also been diagnosed, gleason 6 been on active surveillance for 10 months or so, psa fluctuating between 4.5-5.5, wonder if we should just bite the bullet. Did you also go down the retzius - sparing? How is your recovery now? Hope great progress is being made. Thanks very much for your help!

Edited by member 07 Jan 2020 at 17:24  | Reason: Not specified

 
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