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AUS 800 is installed will try to keep a diary kinda

guards
Posts: 72
Joined: Aug 2010

Well I got the 800 on tuesday afternoon and my lousy luck continues! The doctor decided to put in a dual cuff because of my excess leakage (14 + pads a day). The problem now is i shut down completely. by Tuesday night they had to put in a foley cath. as i was in major pain and no way to pass liquid. Doctor is afraid the foley will cause the uretha to fail.
So wednesday AM foley out and do intermittant caths. was using dilaudid for pain as its bad, discontinued. Wednesday evening,we are cathin 1.5-2 hr intervals the pain is bad as no more pain killer allowed. we only get 200-225 0n each cath.
have nurses (GREAT BY THE WAY)contact doctor i need to sleep as i am worn out from the near constant pain. Doctor oks a foley for the night. 1 1/2 hours later nurses still trying to install foley no luck and can't contact doctor. nurse made a major decision and gave me some pain killer in IV . 10 minutes later the cath went in like butter. relaxed the muscles I guess. slept for the night no pain killer needed! In the AM the doctor had a young assoc come in and verify what the nurses and i had told him. He did a cath with dilaudid it was smooth and went well. pain killer back in the game and we are doing intermittant cath again. BTW PASSED over 4 liters of fluid tues/wed night I would have had to do about 14 caths to get me through a pain filled night. Thursday evening 7 Pm I was discharged from the hospital with oral dilaudid soft caths and I had done the last cath in the hospital no problem as the pain killer was admin through the IV connection on my tube that was still connected. Well here I go again about 9 PM I need to cath, take the oral meds don't feel a thing oh well prob my imagination. OK 30 min later I try and try and try, ok give up and try to gut it out. Well at 1 AM i decided time to go to emergency room , wait I have some stiffer caths left from my old self cath days. After a 10-15 minute struggle I get it through I was really being carful as the doc has me scarded to death I will damage the uretha. Wow what a relief. Ok now i got a brain storm. I have spotted a bit right after i cath and seem to be able to pass some liquid.... what if I took the low dose pain killer every 2 hours and try to pass liquid eery time a felt a tinge, holy cow it is helping ! Have a 9 o'clock appointmnent with doc. have not had to cath since 1 AM only pain is some burning as I strain to pass gas and liquid. Got into see doc abt 10 or so. he's not crazy about the plan and wants to do a cath to check retension as we can't get a decent bladder scan. So lays me down on the table asks me to urinate which i pass some liquid hmmmm does a cath and gets less that 100 out something is working!
now its Friday night and I'm home the plan is 2mg oral every 2 hours (the stuff has a quick life 2.8 hours in the body. got enough for the week end and will see where I am at then. bottom line if they are too tight back in to replace them .I keep hoping i start leaking like a bandit soon and I never thought i say that . I really have little doubt this is going to work but the lord is testing me severly.

Trew
Posts: 892
Joined: Jan 2010

I read this to my wife. We are pulling for you in all this. I hope when I get to that time in my life I fair better. I have been keeping track of my pad weight for months now. I picked up a postal scale on eBay to do this with. When I get back into U of MI in May I want an accurate picture for the doc of what I am doing.

Scary stuff for sure.

mattmans5
Posts: 70
Joined: Jan 2011

Thank you for being so honest,

guards
Posts: 72
Joined: Aug 2010

Well the doc was hoping i would open up and flow like i was befroe surgery. One nice temporary side effect is right now I don't drip at all! I have to force the urine out like before I had the turp only tighter. I'm becoming certain I will have to have at least 1 cuff replaced. He put a 3.5 (new size for special teams to try) and a 4.0 in and he seems to think just the 3.5 and I really have to trust him on this one as I have no knowledge base to draw from. Fact is I don't think I have ever read of one being too tight! But 1/2 a mm isnt a lot! Heck of it is I know he wants this to work for me as bad as I do and thats why its cut so close. He knew as a 14 pad a day man I would require a heavy brake LOL. One nice temporary side effect is no pads for the last 5 days ! first time in over 3 years. Will keep this as updated as I can , I know it won't happen till after next week as I am sked to have staples removed Wednesday by his assistant. Now I wonder do they have to do both insicisions again? off to search the web.

guards
Posts: 72
Joined: Aug 2010

Wow seems I missed a bunch in the posts on the board trew. Seems nearly all had to cath with a foley and intermittant cath! My doc scared me to death with warnings about the dangers involved made me feel much better as I read others problems. Not too worried about 2 foleys to get some rest now. What really seems to work well here is using the pain killer as a relaxer, its really working. On a scale of 1-10 WORST case is about a 3 since Thursdays cath. Next, several had bleeding I have had none. I have some burn where the stitching is behihd my privates and some burn when i pass liquid but its in the output side of the uretha not where the cuffs are. I had no idea that it was common for the flow to be blocked by swelling! I may be in great shape? I guess now its a waiting game. Still no leakage but I am able to void pretty much. I'm able to shower when I want etc. Seems I may be having an easier time than many ,and if doc hadn't taken away pain killer early on it may have been very easy. If you have it done do ot let them remove pain control from your perview ,have a serious discussion with the doc on solutions etc. My last urologist insured I will never let them make that decision for me again. This doctor can at least consider my input and reasoning. Didn't think i would ever hope that my leak would open up again!LOL Probably won't post again till staples come out Wed.

ob66
Posts: 217
Joined: Apr 2010

I have been off the board for a couple of days, and just saw your initial post. I felt the pain as I read through it, and cannot tell you how much I empathize with you. I am one of the posters who has had a very successful AUS placed last May and activated after RT in August. Life has been a dream since. I guided a friend who eventually had an AUS after having had RT some 15 years ago, and they did the double sleeve in recognition of his tissue quality ( I guess I should say lack thereof). Anyway, all is going well for him. Your post op is a horror story. The idea of self catheterization is beyond scary to me. Couple that with the fact that after my AUS surgery, and on the day of release from the hospital I backed up from the swelling and was in some of the worst pain of my life (I might add I have had 3rd degree burns). You feel like a balloon that has swelled, and will burst at any minute. Through all my daVinci surgery, and my AUS surgery my pain number never went above a 2 or a 3. Two or so hours after that catheter came out it was a high 8 or 9. I can truly empathize with you.
Let me add, that after AUS surgery the swelling will give the effect that you are not incontinent any more (that is prior to activation). Believe me when I say it is but the swelling. Sounds like you are feeling a bit better today, and I hope it continues. Keep us informed. Best wishes.

guards
Posts: 72
Joined: Aug 2010

OB I'm with you on pain never above 3. The only great pain has been when I went into blockage and the first time was about 3 yrs ago and I was in the ER for 6 hours running a 8-10 till they finally put a foley in!!! I had a lower leg crushed in a mc/car accident and I don't think i hit over 6. Only time I have had great pain has been due to the blockages. Its amazing that a foley even removes the need for pain killer while installed. Your post was one of them I found that used a cath and gave me great solace to know I wasn't alone in fact it appears to be more the norm for sucessful installs. Would be nice if all the Docs and patients would converse like we do here might give them a better handle on best ways to proceed and control pain. Thats kinda what would be nice and my doc has said my input is helpful to him , sure hope he is being serious because I know I can be a pain in the ass but its my body and most of the time it lets me know whats working for me. I know we are all different and react differently to the same drugs. Kinda funny in a way, I cannot take vicodin as I have BAD psychotic (sp) side effects, BAD. moraphine has little effect on my pain (discovered on MC accident) Dilaudid is a pure pain killer extraudinair on me but I am sure different drugs work different for others. Why did you have to wait from may till aug to activate the device? how soon after did you start leaking heavy heavy again? Sorry for rambling but I'm hoping we all have thoughts and maybe we can make it better for others soon.

ob66
Posts: 217
Joined: Apr 2010

I will probably start from the last and answer. Right before my wife and I were to go a long planned cruise, my PSA rose from 0.05 to 0.07 10 months after daVinci surgery. My doctor recommended, and being a very pro-active sort, I agreed on having an AUS installed upon my return followed by the 37 treatments of RT. So I had vacation in April/May, the AUS installed on May 10, healing to mid June, the RT through the end of July or so, with some waiting time thereafter and activation in mid August. In addition I have been on lupron since last April and all my ultrasensitve PSAs have been less than 0.01. With a bit of prodding from Kongo, I did my reading, and have been a convert to a no dairy, no red meat, reduced sugar diet since September. My internist was shocked with my blood numbers (cholesterol, HDL, LDL,, etc.). My weight dropped back to normal, and I feel great.

One point I really want to make is that you talk about your relationship with your doctor in the middle of your post. One thing you said, you really have to believe, and that is "it's my body and most of the time it lets me know what's working for me". You cannot feel like a pain in the ass, for you are your best advocate, and you can't let guilt cloud decision making. Most doctors really know they are not God, even though they give off that perfume at times. Do not feel guilty. Do what your research and BS receptors tell you is best for you.

Finally, I am pretty sure the cath was needed because of the three days post op swelling. You have been most helpful to me, because I was really not sure that my reaction to my pain was realistic, but it sure seemed bad---real bad.. Good luck moving forward, and I will look in regularly, or send me a PM....Bob

Trew
Posts: 892
Joined: Jan 2010

Ok- I am reading and taking mental notes- the first few days after surgery- not so good. I don't understand why one doesn't get an extra day or two in the hospital- would be a lot easier than using the ER.

My clock is ticking down. I think the scarring in the urthrea is stablizing. I am having no problem with the cath- now down to every other day. I had an equipment malfunction today- what I call a pad failure. Wet through everything. got home with a wet backside- embrassing. I haave had more than enough of this stuff.

Go Guards!! OB- still appreciate your views on all this, too.

guards
Posts: 72
Joined: Aug 2010

I don't believe I'm cheering I just woke from a PM nap and it was great to get some real rest but even better, TA DA, I woke with wet underwear and my first wet pad .ya hoo I leaked LOL. So I am progressing as desired! what a relief this is now I can start cussing leaking again too, a week for any uncontroled flow. Glad your tracking trew this is kinda moment by moment and we can give the next bunch hope. If they control us then anything is possible! I really hate those catrastrophies when ya didnt even know they were coming. So damn humiliating. everyhing so far makes my doc look like a genius hope he is lol. My only concern for you is I hope they get the scar tissue under control you cannot shutdown after the insert because the caths ars a no no for sure. I know thats why I have the stint but the doc explained very carefully that once it was in there was no turning back it was an all or nothing gamble so this puppy had to work for me or I will be pissing my pants forever. hang in buddy the days are hustling by.

Trew
Posts: 892
Joined: Jan 2010

Guards, that is the big issue with me- the scarring in the urthrea. My doc is in no hurry to proceed until she is absolutely certain the scar tissue isn't returning. I almost begged her in January to proceed with the surgery, but no, not until she sees me again in May will there be any decision about a date. It is interesting following your notes on all this. Now I know. I do not understand why a man doesn't get 2 or 3 days in the hospital with this surgery. My wife is not in the best condition and we are 80 miles from U of MI where I will have the surgery.

wonderful to hear you are leaking again!! Such strange joy we now have.

guards
Posts: 72
Joined: Aug 2010

Well its Sunday and Thought I would add my recent thoughts. Still having a lot of discomfort but nothing I can't live with. Advil seems to work pretty well. Think some of the pain is from strain to do other bodily functions not sure. Keep the faith trew we will overcome lol. Saw another post from a new 800 where he has some pain on turn on will follow that one closely, the suprise was it was 4 weeks or less since install, I will be nearly 7 weeks from install to activatation, wonder about the difference but not a time for me to push the issues. Our bike ppaths may be clear of snow by March 30 lol. And my brother-in-law already has a golf date reserved , wow 3 years and I will get to play golf again, I ought to really suck now lol. Well best of days to all I am looking at a half full glass again.

ob66
Posts: 217
Joined: Apr 2010

Glad to hear things are going better guards. Taking advil is a far cry from where you were earlier. Hope things keep getting better with time. Golf is great, but I am not sure about cycling. I used to mtn. bike ride, but the seat and the tubing don't seem like they would be compatible over a long ride. Keep us posted, and continued success.

mrspjd
Posts: 693
Joined: Apr 2010

I remembered seeing a previous thread on the PCa forum about this subject. Don't know if it will be helpful or not, but here's the link anyway:

http://csn.cancer.org/node/200264

guards
Posts: 72
Joined: Aug 2010

OB I gave my mtn bike to my b-in-law. I now have a recumbent tadpole. I agree, no way i can ride a diamond frame, not worth the risk. Also have an ol puch mixte I rebuilt as a single speed its really a neat bike but it won't get ride'n either but I cant part with it so it sits in the garage lol. I tried some of the seats recommended before the 800 and in mho they didnt work. and I ain't takin no chances with damage. besides the tadpole is soooo much fun.

Trew
Posts: 892
Joined: Jan 2010

Guards- as always, i am very much interested in your progress. I"m a bit envious- you will b eout doing things and the earliest i will get my 800 installed will be the end of May. but you have been waiting long then me, too.

My mind wanders along strange paths sometimes and I found myself asking the question, "What if the cancer returns, Trew? You are in a high risk catagory. What then?"

I think I would like to die dry. that is my answer to that. I wouldlike to have some period of being dry again before....... that is what I want. And if I live- all the more so, I want to be dry again and get my life back.

guards, soon you will be playing golf again. Exciting. And I will be out backpacking again with no fear. I can hardly wait.

guards
Posts: 72
Joined: Aug 2010

Well just a update to keep it in real time. The swelling must still be pretty heavy as I have little to no leakage still , fact is I often don't even run a pad for short periods as the only danger of leakage most of the time is coughing etc. I still have fair sized testicals and need to rest at night with a pillow between my legs as I sleep on my side. last couple of nights I have used some of the heavier pain killers just so I could get more than 1 hours rest at a time at night. The pain isn't that bad but its irritating enough I don't rest well at night. Some of it seems to be from the swelling rubbing the pad and causing irritation. Got some new baby wipes and they seem to help some. Again just keepin this running so perhaps we won't expect sudden miracles in healing. Want to go shopping with the wife today but I hesitate knowing the problems I had after taking the wife to lunch after doctors visit. So I will probably wait a few more days till I can walk more than waddle lol. Damn I wish they had spell check on these sites always was a math whiz but spelling and grammer were left to webster ,roget , and a good secretary lol.

Trew
Posts: 892
Joined: Jan 2010

I think we understand you pretty well.

guards
Posts: 72
Joined: Aug 2010

well I just moved into the third week and not a lot of change since last report. The discomfort is about the same and still very little leakage. Still if I try to do something like go to lunch with the wife I know I pushed when I get home. Should probably try some pain killer for that but I try to limit them and use them for rest at night , which has improved a bit. after my shower at night I now sit around on a towel with no pad for a while letting everything air a bit. I got some spray first aid stuff for cuts burns and chaffing and spray it on a couple a times a day. seems to have helped some. Btw I got some underwear from jockey over a year ago they are long legged and use some spandex in the cloth hols everthing in place well. liked them so well I now have 25 pair LOL. when I was doing 12-15 pads a day I often leaked around the pad. so lots of laundry for the wife. Sitting/lying down this evening for 6 hours so far no pad feels great! I still do not leak freely like before but will if I cough or drink enough. The swelling is down a bunch and the purple black is not nearly as bad. Can still feel tightness in the scrotum and would hate to try and energize it right now. I can now feel the tubes and the button on the device but can't feel the full shape yet. I'm resonably sure everything is fine but after 3 years of this crap I worry about every little thing. I hope I don't have to continue to strain to void but even that beats the leaking. I ordered my ID bracelet this week end and it will be here by the middle of the month. The damn thing is full LOL 3 heart stnts, diabetes , the URO stent, A titanium rod in my tibia , barely had room for it all LOL. Know there was something else bothering me and I will try to remember and add it later, thats why I am trying to keep this running as it occurs because we seem to forget the little details as we move on.

Roothead
Posts: 11
Joined: Mar 2011

I had a Radical Prostectomy on March 10, 2010 and have had severe incontinence since...until today, when my doctor activated my AUS 800. I have been totally dry for about 7 hours and not wearing a pad. I feel awesome. I have urinated twice with the device and although its a little difficult to manipulate right now it seems to be working like it should. I had one hitch with the activation. The control pad is flipped in my scrotum. The doctor wasn't sure how that happened and didn't put it in that way but the activation button is on the bottom and the part you squeeze is on the top with the tubes beside the control pad. It is very high up in my scrotum, thus a little difficult to grab the right spot, but I've done so twice. It can be corrected with another small incision as an outpatient but we are going to see if I can handle it the way it is for the time being. I would like to know if anyone else has had this problem.

I just found this survivors website a few days ago and have read many of the posts and have been very encouraged by the comments. Thank you all for sharing such personal information and I hope to be able to contribute in the future.

guards
Posts: 72
Joined: Aug 2010

Hi Root and welcome to a great site with great people. You will find a bunch willing to share there experiences here. Can I ask about your leakage before it was turned on. As you can see its starting to worry me quit a bit as I haven't even been wearing pads for the last few days and only leak when I cough or strain and I was using 12-15 pads a day before surgery. I got the double cuff and I am pretty certain when its turned on I will stop, my concern is damage to the uretha due to pressure. I know I've become an ol lady about this but 3 years wet is a long time.

Roothead
Posts: 11
Joined: Mar 2011

Well, I leaked always during waking hours anytime I would get on my feet, cough, sneeze, yell at the dogs, lifting, etc. The only relief I had was when I was sitting or sleeping. I guess I used 6-8 pads on a good day and sometimes more on a bad day. Sometimes the wetness was bearable for an hour or so and other times I could put on a pad and ten minutes later putting on another. Its been six days now since my AUS 800 was activated and I haven't leaked once. I can't tell you in words how much better I feel. I have had very little discomfort. Squeezing the little paddle is awkward but I am able to do it in just a few seconds after dropping my pants. (I don't think I will be using urinals ever again, unless an emergency, but thats no big deal) I find I'm urinating about every three hours when I feel an urge. I think perhaps I can stretch that out over time.

I know that you are anxious. You have dealt with this for much longer than I, but your time is close, be very optimistic about your outcome. You will appreciate that you won't leak anymore, much more than you can imagine. Please keep us all updated on your progress.

Trew
Posts: 892
Joined: Jan 2010

Root, I am encuraged by your post and looking forward to having very own AUS800 this spring. I am so excited! Well, yes, I am. the leaking is very difficult to live with.

ob66
Posts: 217
Joined: Apr 2010

installation. If yours is as successful as I hope for, you can go back and read your own "before" chronicles as a testament to your "new" continent life. Give us posted.

Trew
Posts: 892
Joined: Jan 2010

May 9 at 2:45 is the next appointment at U of MI. I am certain I will find out then what is ahead of me. I am very much interested in this thread- it offers so much hope!!

Ob, I appreciate your pulling for me. I am looking forward to this period of my life being behind me forever. but I want to remember, too, how eagerly I looked for info on this procedure and remember to post here for others, too. Just like I have been encuraged by Guards and you and others who have posted.

Roothead
Posts: 11
Joined: Mar 2011

Read my post above and be glad you're joining the club! Of course, I have only been enjoying the results for just 6 days, but they have been great days. I am retired (June 2010) and I am an artist. I went out yesterday and painted a picture on location in a rural area, with my easel and paints and had a marvelous time for about 2 1/2 hours. Weather was sunny and dry...and so was I. Wishing you the best.

guards
Posts: 72
Joined: Aug 2010

Wow I really leaked a bunch this AM !!!! I had to put some light pads on yesterday as I was Spotting my underwear very consistantly. So I used the mini pads I have, but for some reason they seem to chafe me , perhaps due to some of the swelling I have left ,minor compared to original but still have some. Anyway had a cup of coffee for breakfast as usual and put on a guard as they don't seem to chafe as bad. Got tired and layed down for about an hour and woke up WET, YA hoo. This is the first real leakage I've had since surgery. Seems I am moving in the right direction at least, Odd that that should make me happy LOL. Also when I sit on the pot now, a large percentage of the urine now just flows out without the straining, I can just relax and it will flow, I still have to work to empty but That will continue I suspect.
There is still some discomfort when I sit, where the Stint and cuff are located and I believe this is quit normal as there is gonna be a bulge there. Also some discomfort from the chafing of the pad and swelling. The baby wipes and spray help the chafing a bit also.
I am finally starting to really believe it is going to work. 22 more days !!! Actually thats good as I still have considerable tenderness in my scrotum and I am not in a hurry right now to grab it and plunk the magic pump LOL. I sure hope this helps others as I have looked for a chronological diary after surgery and not found any. Trew I think you should try to keep one also as I'm sure post surgery and recovery will vary for all of us and any reference we can provide for those that follow will at least be a bit of a solace. Easier for some than others and a reference.
Got my new ID braclet and its much nicere than my old one ,funny how after a while yo don't even realise its there.Well unless there is a great change i'll comment again aty week 5.

Roothead
Posts: 11
Joined: Mar 2011

Where did you get it? I reckon I probably should get one too.

guards
Posts: 72
Joined: Aug 2010

http://www.americanmedical-id.com/marketplace/category_viewall.php?scrollcat=brac_classic&mastercategory=bracelets

Root its a nice bracelet ,got the gold filled and the engraving seems a bit light but it works for now. my old one was stainless and deeper engraving got it at walgreens lol wore it for over 6 years no problems. But needed more specific info on this one. Thought I might like a dressier one not surer I do.

JFields88
Posts: 2
Joined: Mar 2011

http://buysilverjewelrydirect.com/id190.html

guards
Posts: 72
Joined: Aug 2010

double

guards
Posts: 72
Joined: Aug 2010

JF welcome to the board ,what a great bunch a people here. Am always glad to here an 800 is peforming as planned. any problems at all with your? Thought about the USB bracelet but was afraid with my luck the team would be computer illiterate lol. maybe I will get one of the necklace's as a backup. You can put so much more info on the drive. I see where they also claim to be water proof. also a concern.

JFields88
Posts: 2
Joined: Mar 2011

I would be happy to answer questions but, as far as I'm concerned, CHRISTMAS CAME EARLY!

The AUS 800 was implanted following almost 18 months of being homebound due to incontinence after a second diagnosis of cancer and a radical prostratectomy. The initial diagnosis and treatment involved extreme high doses of focused radiation which caused healing and scar tissue problems with the second diagnosis post removal. I underwent 8 surgeries to remove the scar tissue which resulted in my incontinence.

The AUS 800 has turned my life around and I'm so thankful that I had the advice, insurance and support to be a candidate and recipient of this procedure.

Trew
Posts: 892
Joined: Jan 2010

Fields, so encouraging to read your post. I am homebound as often as I can be. it seems this will go on forever.
This morning on a 3-mile walk I had over 9 oz of urine in my pad! All I want to do any more is just sit very still at home, not move and avoid drinking water, or any liquids. This is a terrible way to live. I had the same scar tissue issues you did- I have been cathing since Sept 1. I see the doctor at the U of MI on May 9 and I hope, I hope, I hope she will say ok- we can go forward now. Your post is so encouraging.

I have no resistence to the cath now, and I was fortunate- only one OR trip to cut the scar tissue. Dr Latini told me before the first OR trip it sometimes takes 2, 3, 4 OR cuttings to stablize that tissue like in your case.

the last few days I have been getting this excitement, an anticipation building inside me.

guards
Posts: 72
Joined: Aug 2010

Not a lot of changes to report this week. I continue to consume pads daily now. Much of the tenderness and rawness seems to be leaving. I can now feel the AUS without winching and can find the button shape. Still not certain I wanna squeeze thst hard to cause the pump to work but thats minor lol. My doc was a tad rough when he turned it on and off in the hospital a coule a times when I was having problems just to make sure it was off. I'm sure I was a bit tender as it was only 1 and 2 days after the initial surgery. As the swelling has left so has much of the rawness caused by the pad rubbing. That leaves me with 2 more weeks of waiting , march 30, at 1130 AM will go down in my personal history book! Trew I just keep hoping all goes well for you soon also, it has been a long unhappy journey. glad we have another new member telling us how great it is and with a year and a half wet he well knows. I will post week six and week seven its a turn on. Current status almost makes me want to call and try to up the turn on date but this doc has been sooooo good to me that I really don't want to rush him. I kinda feel that perhaps its because if the diabetes but maybe he can't count weeks lol. he said 6 and scheduled 7 lol. oh well with all the problems early on thats fine. 5 down 2 to go.

Trew
Posts: 892
Joined: Jan 2010

Guards, funny you mentioned contacting your doc about moving the start day up a bit. All day yesterday I was thinking about writing my Dr at U of MI and telling her how I pray for her health and welfare daily, and if there is any openings before May 9 I am available. But she is not one to be rushed, so I'll just wait and count the days.....

Guards, I am excited about your turn on date coming up.

Which side of scotum did they place your control button? I have been thinking about this and in my mind I am not sure which way it goes. and I am one of those kinds that sometimes I do a few things from the left side and I am not sure which side the swtich goes. Details, details, details.......

Roothead
Posts: 11
Joined: Mar 2011

Mine has been turned on for almost two weeks and I am getting used to going to the bathroom that way. I have just a tiny bit of tenderness at the incision in my scrotum and some itching but no other discomfort. Squeezing the paddle is pretty easy, it is on the left side at the base of my penis. It is slightly difficult to grab it right quickly but I have learned to do it with just my left hand thumb and forefinger, where I was using both hands at first. The oddity about my situation is that the paddle is upside down from where it should be, sort of folded up on itself, so every thing is backwards. My doctor was quite surprised as to how that happened, with no explanation. But, it works and there is no pain whatsoever. I do go a lot more than I used to before Prostate cancer (average about every 2 hours while awake and about twice a night) and I think its because I went so often with the incontinence and my bladder has shrunk some. The doctor said over time is should get larger.

I am going out for drinks with former co-workers tonight and I am looking forward to not sitting at the table miserably wet. I'm gonna fill that bladder up!

Trew and Guards, I am pulling for you guys.

ob66
Posts: 217
Joined: Apr 2010

yours kidneys may enjoy the lack of back-up much more during "drinks".....haha...Ain't it great. Life changing.

guards
Posts: 72
Joined: Aug 2010

Root you really made me smile when you talked about going out for drinks! Two beers used to go through me like Grant through Richmond. I know my bladder has shrunk a bunch It was close on size 225-250 on being acceptable but more often and dry is acceptable to me and the doc here said the same about stretching. I was roughly 3 years in a mess, a couple of times when I had to go to emergency for catheters they drained close to 600 so it can stretch lol. Are the urges pretty much the same as before ? I was getting up 4 or 5 times a night before the surgery I guess due to the enlargement of the prostate, so I really think that will improve. as I guess I wasn't empting to well. I sure empty fine now as the Stent just lets it run out.
Trew I'm on the right ,glad I'm not on the left as I might have a hard time accessing it. But not a problem for root. I would prob be ok to but have gained so much weight sitting here I don't move as well as I did. Will be working on that soon. Got an email from my golf club theat open this week end!!! My game ought to be wonderful LOL. Really don't GAS I just want to be out there.

kreinholt's picture
kreinholt
Posts: 35
Joined: Mar 2009

Mine is on the left. I am left handed, not that it makes a huge difference I guess, but using my left hand to activate has felt more natural to me. More like it was pre RP, if that makes sense.

guards
Posts: 72
Joined: Aug 2010

Was sitting here this morning and finally decided to call the Doc to try and move my activation date up. He did it !!! Wa Hoo Wednesday 8:30 Ta DA. Found out the only reason I was out an extra week was he had planned to be out of town this week but that got cancelled so I am moved up! virtually no change since week 5 still leaking like a sieve with totally no control. I have no pain left just some irritation from wet all the time. Some numbness where the stiches were behind the scrotum. Think It will be a tad touchy where the pump is for a while as it still feels a bit raw there , but we will see. Wow I can't believe it's finally going to happen, 3 years is a long time. Will give a report on how it goes wednesday late. Bless you all and I hope your day arrives soon.

guards
Posts: 72
Joined: Aug 2010

Wow was so easy to start. Doc said it quit dripping immediatly, 3 hours and so far dry as a bone, went to pee once , no problems! Now the kinda bad news, Because I have the double cuff he kinda wants me to turn it off over night YUK. Compromise I have an appointment in 3 weeks we will discuss it lol. Odd thing happened sometime last night the darn thing flipped and the button is now down and the bulb is up. I know the button and lines were on top before today as I have checked it regularly, weird. Doc said no problem if I want, work on flipping it back, but won't bother a thing like it is, certainly don't bother me so leaving it alone. All the research on the web says there is no benefit turning it off in any of the studies so I have to get my ducks in a row on this one. The turn on is so easy I'm lucky i didn't do it by accident fishing around down there. OK trew your turn !
Thanks for everyone here and the support during the last few months. I know I for one get very nervous over any and all irregularities but I've been bitten a few times by unexpected results So again Thanks all. Too anyone even thinking about an 800 DO IT. If you want to talk just leave a msg on the board and I will gladly give my e mail or phone number to you. Thanks to all my fellow survivors!

Trew
Posts: 892
Joined: Jan 2010

I can hardly wait! I am sure my next U of MI visit will just fine and I will be cleared for surgery sometime after May 9. I can hardly wait.

March 23, 2009- 2 years ago today- I have divinci surgery and lost a nice part of me. I am glad I am alive, but I miss what is gone so very much.

guards
Posts: 72
Joined: Aug 2010

Well i mentioned the pump had flipped --- well it flipped back and i didn't do a thing to cause it. So I guess it can flip at will ,don't matter works either way !

Roothead
Posts: 11
Joined: Mar 2011

I know you are estatic for being dry, CONGRATULATIONS!! I have been dry now for about 3 weeks after activation. AND Oddly enough, mine is flipped too. I posted that a few weeks ago. The doctor had no explanation but it still works just fine. I only have the one cuff and I don't have to turn it off at night. Each day, I get used to it more and more, I've even forgot I had it once and tried to urinate without squeezing, nothing happened and I gave it a quick squeeze and that was that. The cuff closes almost immediately after urinating and sometimes I squeeze it again to make sure my bladder is empty. I emailed the manufacturer of the AUS 800 to ask if the control pad flipping had been reported by others and if it would be a problem but there was no response. I will try again.

Trew
Posts: 892
Joined: Jan 2010

Like some my urthrea has had problems with scar tissue. Only one OR visit to clean it out, but one local uro tried cleaning it the old fashion way with wire. My! that was an experience.

I have been cathing since Sept 1. I am now downto 2-3 x a week. but today I noticed just a bit of resistence and I have been bleeding all day. I will cath again tomorrow and see if there is any change, but I am still bleeding some about 12hrs after the cath this morning. I just hope this is not a scar tissue issue. that would be another delay......

I am hoping..... every day.

guards
Posts: 72
Joined: Aug 2010

Week has passed and I am pretty much dry. have coughed a couple of quater size spots but not evenh enough to go buy some mini pads yet. still feel the stitches behind scrotum but just kinda irratating not a problem. pump still moves a lot sure glad they have kink free tubing lol. I will post a couple more weeks and if all is well will let this fade away into the archives for reference of future 800 recipients.

kreinholt's picture
kreinholt
Posts: 35
Joined: Mar 2009

Gaurds, I am glad to hear that you got your issues resolved. I had mine put in in November and am loving it just as I sense you are as well now. I was leaking (3 - 4 pads a day w/occasional accidents) for 19 months before I took the plunge. I now don't worry about accidents nor do I carry pads with me any longer to change during the day, however, I do still wear one but I could easily go for days or weeks without changing if I have to. Haven't actually tried to go without yet. 100% quality of life improvement. I caught myself feeling so normal that I would stand at the urinal and expect the flow to start like before my RP and then finally realize that I still needed to squeeze the bulb. I am lookiing forward to using it during my summer activities now. Again, I am happy to hear that you are finally able to enjoy it.

ob66
Posts: 217
Joined: Apr 2010

and are on the downhill run. Enjoy, and if you ever doubt your choice, go back and read your posts on this entire thread. Nice to see all going so well for you. Congrats. The AUS will soon be almost taken for granted (but never entirely).

guards
Posts: 72
Joined: Aug 2010

Well I had my checkup today and the doc decided after discussion to leave it engaged 24/7.
yahoo! Everything is working great so far. I am nearly totally dry. Had a bit of a cold last week so some pretty heavy coughing caused some very monor spotting. Still not using any pads though I bought some panty liners, haven't felt the need for them. Got a new psa and it was 0 for the second time. So life is rosy today, I had a smile on my face at the doctors office for the first time in a long while. I will now let this discussion float off into the archives so it can be used as a reference. I will be around the board especially to see how my friend trew progresses. Thanks all for the inspiration and support. Oh I forgot no doc for 6 months !

Trew
Posts: 892
Joined: Jan 2010

Trew is always watching anything about AUS stuff. Glad to hear it is going well with you, Guards.

I posted on another thread but no one seemed ot notice so I will post it here. I'm getting a new model of the AUS called the AUS801. When you push the "go" switch it plays "Don't Worry, Be Happy" while you urinate loud enough so others can hear it and enjoy it too. Nice cnversation piece in public rest rooms.

I don't see how no one picked up on that- it was back around, let me see, April 1 I made that post. A newer model due out soon is the AUS009- plays the entire Beethoven 9th in 3 min segments.

Everyone, life will get better.

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