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Posted 1/18/2011 2:04 AM (GMT 0)
Tiger,
I would be pleased to exchange emails. If you click on my tall guy name above where it says "regular member" it will take you to my HW profile. My email address is in that profile.
yes, the signature is what shows at the bottom of the message. The profile section is also where you can complete a "signature" to show at the bottom of your posts. You can click/check the box below the message to have the profile shown in the post. The List Moms recommend you only show the profile once in a thread to keep them from getting so long.
I fly commercial about 60,000 miles a year. I started taking trips even before I had the Aus activated. I see no difference in performance when flying.
I look forward to getting an email.
Carl
Posted 1/18/2011 10:27 AM (GMT 0)
Carl

email entered the ether,so should be with you now.

Best

Tiger

Posted 7/30/2011 3:12 AM (GMT 0)
Aug 5, 2011 Dr. Latini will be doing her magic on me. I am impressed with her compassion and her ability to put me at ease. I have been scoped by her so many times the last 12 months and she just has a way of doing it to help minimize the awkwardness of the procedure- but now, finally, scarring tissue no longer an issue and I am all cleared and set for surgery in 1 week. Bring it on!!
Posted 7/30/2011 9:59 AM (GMT 0)
Hi Trew

May I sincerely wish you well with your surgery and recovery.I will be thinking of you and wish you luck.

Sadly I cannot have the AUS now as there was too much damage caused with the radiotherapy and subsequent 3x HIFU procedures, culminating in a catastrophic uro/rectal fistula.Although this as reapired with reconstructive surgery it has left me with a massive abdominal incision Hernia and a stricture,so at the moment I have to live with a 20CH suprapubic catheter for life,though they are talking about removing my bladder and performing a kidney conduit bypass with a stoma.

My cancer is also still a ticking time bomb controlled with Hormones.

What a mess----but life goes on.

Best wishes,let me know how you arfe in a few months time

I have heard the device works well, so go for it.

Tiger John

Posted 7/30/2011 1:28 PM (GMT 0)
Hi Trew,
Welcome to HW. And best wishes with Dr. Latini's magic. You are I'm good hands. Keep us informed.
Tiger,
Hang I'm there, as you say life goes on and attitude is everything.
Carl
Posted 7/30/2011 7:19 PM (GMT 0)
An AUS question- I am wondering if anyone had problems with nite leakage and if the AUS was able to control the problem. I had been an active backpacker until cancer, but the backcountry is no place to be if you leak age nite. If the AUS can solve that problem I"ll be back out on the trail again this fall.

I am hoping for great results. I"ll post as soon as I can after surgery.
Posted 7/31/2011 2:56 AM (GMT 0)
Hi, Trew.

 I did leak 100% when I was walking but I did not leak at nite before the AUS implant that I got  this jan. and it really works good and the only leaks I have  had since then have been recent as result of some bad coughing spells (sinus infection) and these were small. So, my AUS has controled the daytime 100% leakage. I think that when these AUS's are selected properly they pretty guarantee that you will not not leak. I can  push hard and try to pee but until I open the AUS nothing comes out. Oh, I can leak a small amount if I sit wrong sometimes where i put pressure on the AUS cuff and partially defalte it. I am guessing that your doctor decided that the sling would be all you need? Anyway, i hope your implant fixes your problem and your recovery is without problems.

Ron

 

Posted 7/31/2011 11:51 AM (GMT 0)
 

At nighttime, I sleep with a pillow between my legs, when on my side. Sometimes I think I squeeze the cuff a little bit with my legs coming down on the device and then I leaked a bit. But other than than I only wear one pad for the most part.

I also noticed when traveling and I sleep on a hard hotel bed, I will leak aroung the 4 hour mark because of the same above situation, the hard bed does not allow my hips or legs to naturally curve and therefore it squeezes the cuff.

Just wanted to put down my experiances.

Neo

 

Posted 8/1/2011 2:17 AM (GMT 0)
I am reading and counting down to Friday. I call U of MI Thursday to get a surgery time for Friday. I hope it isn't the first surgery of the day.

I am looking forward to this so much. incontinency is just a life style changer, for sure.
Posted 8/1/2011 12:07 PM (GMT 0)
It will be about 6 weeks or so before they activate the device. Let me tell you it works from the getgo. I walked out of the doctors office with no diapers or leg bag. A life changer.

The recovery time is a little hard. Never had an idea the scrotum could get so big!! But it all heals.

God bless you. Life will return to normal

Chris
Posted 8/2/2011 4:30 AM (GMT 0)
I have a question about the incision site for the AUS surgery. the incision is about as bottom end as it gets- and for six weeks one is still incontinent- how do you get the incision site clean and inflection free if that area is being involved int he incontiency problem all the time?

Personal History:

PSA under 10
Gleason at time of surgery in March 2009: 5+4
Bladder neck involvment- cancer stage iv.
Followed with combination of proton and external beam radiation and HT.
Quit the original doc who I never saw again- only saw his PA for a year after the cath was pulled and found another doc who referred me to U of MI.
Quit the HT after one year instead of going with the 2 years the first doc wanted to have me on.
My overall opinion of prostate cancer: Very low. By over all opinion of the first doc: very low.
One of the worst days of my treatment was the day my first doc in Lansing, MI pulled the cath. I was dripping pretty heavy and the one pad he gave me was getting wet in a hurry, so I asked for another pad. He said, almost quoting now, "do your kegels." I said, "I am." then he said very indifferently "Then you are doing them wrong."
that was right after he hung up the phone after getting my path report and had said to me as if he was totally indifferent, "its as I expected you have positive margins, you will need radiation or you will die." Terrible day in my life. Scared my wife terribly. I have not had a dry day since the cath was pulled after surgery in March, 2009. Friday, Aug 5 I take a big step towards changing that.
Posted 8/2/2011 12:32 PM (GMT 0)
I wore a condum cath and leg bag, plus a thick man pad and diapers. Do not know what anybody else did. So I was dry anyway for the most part. At night I used a large bag I laid on the floor. I still got up and voided every several hours though.

On the other end, after surgery, I was fairly constipated and just go the other direction when you clean yourself. I was on antibiotics as infection is a real concern. They also sealed me real good down there with what ever they seal you up with. The stitches were real tight and bulky.

I am sure you'll be fine. Speak to your doctor about getting a condum cath prescription though. He may give you one at the hospital so you know how it works. If so, I am an expert rolleyes if there is one on wearing one day and night as I wore them for several years. I can coach you on how to attach them and the extention tube for maximum effect.

Chris

[email protected]

Posted 8/2/2011 2:21 PM (GMT 0)
neo, the condumn cath is a solution I hadn't considered.  I do not want to sit in a wet pad while I am healing.  Very helpful suggestion- thanks.

 

Posted 8/2/2011 6:14 PM (GMT 0)
I need to order a medical alert card. I am wondering what others with the AUS have on their medical IDs?

And out of curiosity, what kind of ID are you using?

I am going to get the velcro wrist band.
Posted 8/2/2011 7:44 PM (GMT 0)
Trew, I thought you were getting a sling? I didn't realize you are getting the AUS. I was given an AMS med alert card for my wallet at my AUS activation appointment. My doc's resident said pull down the pants, he gave the bulb a quick squeeze and said you're done. He said drink some water and hang arround the building and then come back so he could watch me pee. I remember it was really wierd, I was walking around the houston med complex and was sure I was peeing all over myself but I wasn't!! I leaked 100% prior to the AUS then now close to zero, what a change. You''l be pleased at how this device is so natural feeling, all except having to push the button to go and becomes natural vert fast. I hope you like your as much as I do. Good luck with the surgery and keep us posted on your progress.
ps ditto what Neoman said about the condon catheter, used them long tern before the AUS, worked good for me.
Ron
Posted 8/7/2011 3:12 AM (GMT 0)
The deed is done.  I am home from U of MI and a very up close and personal appointment with Dr. J. Latini.  I now have a AUS 800 waiting to be activated in 6 weeks. 

I have a nice comprehensive list of no-nos for the next 2- 4- 6 weeks and 6 months.  Dr. Latini plans on her patients being successful with their new AUS system. 

I am tired, sore and swollen.  time for me to go to bed and dream of better days to come. 

 

Posted 8/9/2011 2:12 AM (GMT 0)
Trew,

Congrats the hardest part now is the wait.. did you research the condum cath device?

Hey, pretty swollen are you? I never knew the gonads could get that smhair big!! And they go back to their previous size!! Amazing!!

Chris

Posted 8/9/2011 5:05 PM (GMT 0)
I am swollen- day 4.  but the worst seems to be over.  I see the urine stream is getting a bit stronger and the color down below is returning to more of a normal color.  Touching the button is, well, tender, painful.  I can see why there is a wait for 6 weeks.  I hate to think of trying to grab the control box and activating it right now. 

Nice day for a nap! 

Posted 8/10/2011 11:20 AM (GMT 0)
Trew, I am suprised you can feel the button. It took me several weeks I think. Anyway, it was at six weeks when I could grag it like you need to. Just continue to sit on your side!! God Bless


Chris
Posted 8/11/2011 5:10 AM (GMT 0)
Neo, that is encouraging to hear.  I have been thinking for the last few days- this is day 5 today- I can hardly stand to touch the box and gentle tug it dowward as instructed.  Will there ever come a day when there is no pain and I can actually push in on the device?  But I can feel the device under the skin- in a general way.  It seems to be sitting right at the bottom of my scrotum which is good. 

The swelling is going down, but I am still tender.  Actually very tender- sore even even.  Hey, it just hurts there yet.

No pain pills since day 3.  What an expereince.  I have to push to get a urine stream going and once it starts it's very thin, but impossible to stop. It just runs until it is run out. 

Overall, this has been easier than I imagined, but what man would imagine messing with "that" part of his body easy?

Time for bed.

 

Posted 8/20/2011 10:09 PM (GMT 0)
2 weeks past AUS surgery.  I have been doing my best to tug on the device in the scrotum, but after two weeks I am still very tender.  I think today has been the first time I have been able to actually feel the bottom of the control button, but I am so glad I don't have to push anything yet.

That said, I hope in 4 weeks there is great change in the sensitive of the area and the button is very easy to activate. 

Wow- interesting adventure.

Posted 8/21/2011 12:43 PM (GMT 0)
Well, if we were younger, it would be nice I suppose to have a new play thing!! ha ha.. but now that we are older, it just is a device that we need to do our daily (semi hourly) thing! Glad you got ahold of things turn !! ha ha!!

I am in conversation with another Bladder Cancer guy who is getting the device this week. He is very excited as well. I hopes he joins us in our conversations!!

Chris

Posted 8/21/2011 1:51 PM (GMT 0)
Trew, I think that is why the wait as long as 6 weeks for "activation". Mine was activated at 4 weeks and by that time the wall of the scrotum had thinned and other swelling had subsided to where the pump unit could be easily operated. At two weeks I know I would not have been able to operate anything due to swelling. So, it won't be long now
Posted 8/22/2011 2:35 AM (GMT 0)

knotreel said...
Trew, I think that is why the wait as long as 6 weeks for "activation". Mine was activated at 4 weeks and by that time the wall of the scrotum had thinned and other swelling had subsided to where the pump unit could be easily operated. At two weeks I know I would not have been able to operate anything due to swelling. So, it won't be long now

Knotreel, sounds like I am about on track.  And now that you mention it, the scrotum tissue does feel very thick still.  it is reassuring to hear how others have done aheaad of me.  2 week check up tomorrow in Ann Arbor with Dr. Latini. 

 

 

 

 

Posted 8/23/2011 11:36 PM (GMT 0)
I am officially 5 months activation 3/09/11 after 6 wks healing period
All is well if you have the patience to wait until the cuff closes well.
I sometimes have problems dependent on what I sit on.
I found the crunch seat at local Y hits the button and I may leak - so pad time.
I sometimes have some dribbles on the tighty whities but small price versus the 8 pads & hoping I wouldn't soak everything.

Good Luck, you will do fine. Activating the unit is becoming second nature.

Sleeping au natural is great after 10 years of pads.
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