AUS 800 is installed will try to keep a diary kinda

24

Comments

  • Trew
    Trew Member Posts: 932 Member
    #22
    Roothead said:

    I wanted to share this with someone...
    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.

    Root, I am encuraged by your
    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
    ob66 Member Posts: 227 Member
    #23
    Trew said:

    Root, I am encuraged by your
    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.

    Trew, I can't wait for your AUS
    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
    Trew Member Posts: 932 Member
    #24
    ob66 said:

    Trew, I can't wait for your AUS
    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.

    May 9 at 2:45 is the next
    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.
  • guards
    guards Member Posts: 72
    #25
    4 weeks today
    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
    Roothead Member Posts: 11
    #26
    guards said:

    Welcome
    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.

    Thanks for the welcome.
    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.
  • Roothead
    Roothead Member Posts: 11
    #27
    Trew said:

    Root, I am encuraged by your
    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.

    Encouraged
    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.
  • Roothead
    Roothead Member Posts: 11
    #28
    guards said:

    4 weeks today
    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.

    ID Bracelet
    Where did you get it? I reckon I probably should get one too.
  • guards
    guards Member Posts: 72
    #29
    Roothead said:

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

    link
    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
    JFields88 Member Posts: 2
    #30
    Have had the AUS 800 implanted since Sept. 2010
    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.
  • JFields88
    JFields88 Member Posts: 2
    #31
    Roothead said:

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

    Have a USB Bracelet with all my medical info on it....
    http://buysilverjewelrydirect.com/id190.html
  • guards
    guards Member Posts: 72
    #32
    Week 5 today
    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.
  • guards
    guards Member Posts: 72
    #33
    JFields88 said:

    Have a USB Bracelet with all my medical info on it....
    http://buysilverjewelrydirect.com/id190.html

    USB bracelet
    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.
  • guards
    guards Member Posts: 72
    #34
    JFields88 said:

    Have a USB Bracelet with all my medical info on it....
    http://buysilverjewelrydirect.com/id190.html

    double

    double
  • Trew
    Trew Member Posts: 932 Member
    #35
    JFields88 said:

    Have had the AUS 800 implanted since Sept. 2010
    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.

    Fields, so encouraging to
    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.
  • Trew
    Trew Member Posts: 932 Member
    #36
    guards said:

    Week 5 today
    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.

    Guards, funny you mentioned
    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
    Roothead Member Posts: 11
    #37
    Trew said:

    Guards, funny you mentioned
    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.......

    Mine has been turned on for
    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
    ob66 Member Posts: 227 Member
    #38
    Roothead said:

    Mine has been turned on for
    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.

    Roothead....Empty at halftime, and
    yours kidneys may enjoy the lack of back-up much more during "drinks".....haha...Ain't it great. Life changing.
  • guards
    guards Member Posts: 72
    #39
    Roothead said:

    Mine has been turned on for
    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.

    Smiling
    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.
  • guards
    guards Member Posts: 72
    #40
    Well i did it
    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
    guards Member Posts: 72
    #41
    DRY AT LAST, DRY AT LAST, DRY AT LAST
    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!

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