The Pad Diaries

griff 1 said:

trew
i like that statement, now someone tell me this is just a simple cancer. how true bro, i had someone come in my work and asked me why i had surgery to have my prostate removed. he said his father has it and its no big deal, man i wanted to whack him. i told him i,m 52 and your dad is in his 70,s. i just left it at that. man people should,nt say anything if they don,t know about it. as far as cath designer colors you could spray paint a few and they might look good. hang in there. griff

No Big Deal????
Anybody who says that prostate surgery is no big deal should be whacked or something....they just don't know. You some people say that prostate cancer is no big deal, you just have to walk away and consider their ignorance.

Trew said:

I did lose my hair from
I did lose my hair from radiation, but in a place I can't show anyone.

PC is real enough to me. And my wife.

Last try to turn on my AUS....
I go to the hospital in the morning(Mon. the 30th) at 7:30 for a routine colonoscopy, so while they have me asleep another doctor from the urology practice is comming in on his day off to try to activate. The consensus is that the pump does not have enough fulid in it to force the "poppet" to unseat. I have printed off the pages from the operating manuel and they told me to bring them with me. They said they would try them all if takes it while I am asleep for the other procedure. Good thing the surgon doing the colonoscopy is a friend of mine that I have known all my life. That made it easy for me to get them in his O.R. to give it a try.
Regards, hightide

hightide said:

Last try to turn on my AUS....
I go to the hospital in the morning(Mon. the 30th) at 7:30 for a routine colonoscopy, so while they have me asleep another doctor from the urology practice is comming in on his day off to try to activate. The consensus is that the pump does not have enough fulid in it to force the "poppet" to unseat. I have printed off the pages from the operating manuel and they told me to bring them with me. They said they would try them all if takes it while I am asleep for the other procedure. Good thing the surgon doing the colonoscopy is a friend of mine that I have known all my life. That made it easy for me to get them in his O.R. to give it a try.
Regards, hightide

Leak
I guess I would have two concerns: Was the recommended amount of fluid used during "installation?", and if so, there's obviously a leak somewhere. I know the fluid is supposed to contain a dye so they can locate leaks using x-ray, MRI, or something similar. GOOD LUCK!

hightide said:

Trew- Your time is comming....
I truly belive that good things are in store for you. I will be praying for your problems to resolve and you can get your AUS. I can already see a part of NORMAL returning.
I will still be on this site and you will be in my thoughts every day.
You have encouraged and help so many people on here, I just know good things have to start happening for you!
Regards, hightide

Congratulations!
HOORAY! I've been waiting all day for your post. I knew it would work (eventually) and knew it would be worth it. After I got mine, I felt I was released from prison -- and I was. Incontinence kept me confined and limited (and at time prevented) everything I did or wanted to do. Now, if I could just get Ol' Sparky to stand at attention instead of "slumping", I would almost be back to normal.

Hey Trew -- you're next!

Skid Row Tom said:

Congratulations!
HOORAY! I've been waiting all day for your post. I knew it would work (eventually) and knew it would be worth it. After I got mine, I felt I was released from prison -- and I was. Incontinence kept me confined and limited (and at time prevented) everything I did or wanted to do. Now, if I could just get Ol' Sparky to stand at attention instead of "slumping", I would almost be back to normal.

Hey Trew -- you're next!

Standing at attention.....
Good morning Tom and Trew, and thanks for celabrating with me. I was begining to get a little concerned about the AUS not wanting to turn on. I don't know if I have mentioned it before but I had both the AMS-800 and the AMS-700 (three piece penile implant) all put in at the same time. I figured why not get it all over with one recovery!!!!! I am a big chicken, ha,ha. The AMS-700 has been working, starting seven weeks after the surgery .When it is pumped up it's worth writing home about, but the 800 was really getting on my last nerve!!! We are in the process of totaly remodeling the kitchen and some of the workmen are starting to arrive, better go for now but may be back on later today.
Best regards, hightide

Trew said:

Progress Notes, Tuesday, Aug 31, 2010
I am greatly encouraged by the progress of two good forum buddies. They give me hope.

Tomorrow, Sept. 1 I return to U of MI to get my cath pulled. I have been warned: "You will run a lot when the cath comes out." that is the nature of the beast I am dealing with.

Looking at my U of MI papers I an scheduled for my next appointment with Dr Latini on Nov. 1 to have another cystoscopy. I am losing count of the number I have had this year already. The last one was done in the OR on Friday along with extensive cutting. I think this will be my 2nd or 3rd in the examine room in Nov.

IF no scar tissue reforms I can get scheduled for an AUS.

On top of all this I have a friend in Lansing who has just gone on hospice care. His ca (not prostate) has invaded his bones and other body tissues. He is sinking fast now.

Very sobering, all of this.

Skid Row and Hightide- thanks for hanging with this forum and sharing. I can hardly wait for my turn.

Trew
Sorry to hear about your friend. Just try to remember that is not you and your situation is looking up. Maybe there will be no further scaring and your Nov appointment will be to schedule your AUS. Either way your turn is coming soon for relief. Hey, since you liked the latest cath so much maybe you can talk them into squeezing 2 in there at the same time lol. Anyhow, think positive and this will someday be a memory.
Good luck tomorrow.

Ed

ob66 said:

Question of skid row and hightide
First off, congrats to hightide. So happy the results seem to be good so far. I follow you by a couple of days. Sept 2 my AUS will be activated and I am hoping it goes as well as it did for Skid Row, and you too Hightide. It was put in May 10 but activation waited for me to finish radiation therapy + 3 weeks for reasons I don't really understand, but nevertheless I am almost there. Having had daVinci surgery June 6, 2009, then incontinence for almost a year with extensive Physical Therapy that took me down from 8-10 pads per day to 3-4 pads per day. Right now, after RT, I am right back up to 8-10 pads per day. As it turns out I wasted a lot of time with the PT considering the side effects of the RT completely reversed all the benefits. I will report on what I hope to be success Thursday PM....Meantime, I was wondering what you two do for MedAlert. I don't like bracelets, but it seems the safest way to go. My urologist suggested I have engraved: "Artificial Urinary Sphincter, Call Urologist" which sounds safe. I have talked to Internists, other MDS, emergency room trauma surgeons, and for the most part they really don't know what an AUS is, and how to work them. Imagine being by yourself, with a 911 incident, and hitting the Emergency Room without ID??????? You sure don't want to be catheterized in the closed position. Any suggestions or discussion other than what I reported? And Trew, I hope your future starts turning positive in this regard ASAP...

Medical ID
I have a MedAlert bracelet, but seldom wear it. I also have a MedAlert dog tag and always wear it. I ordered both from American Medical-ID.com Here's what's on it:
Line 1: NKA Type A+
Line 2: Urinary prosthesis AUS
Line 3: (Empty)
Line 4: Birth date
Line 5 Address
Line 6: City/State
Line 7: Phone #

NKA is"No known allergies" and A+ is my blood type. You're right -- I haven't run into a doctor yet (other than a urologist), let alone a medic, that knows what an AUS is. I hope putting "urinary prosthesis" on the tag will give them pause and be more "descriptive". I even wondered about "AUS" thinking they may believe is was made in Australia. But if somebody calls a urologist and asks, "What the hell is a urinary prosthesis?", the AUS may make sense. There are two other things I do. I keep the activation/deactivation instructions in my wallet. When I visited my son in California this summer, or when I went on my 8,000 motorcycle trip with my friend, I tell them that if something bad happens, I have an implanted device and to tell all medical people "no catheters!" I also tell them I carry instructions in my wallet. All my close friends know that I've had cancer, trouble with incontinence, and have a "button" I push to pee. In fact, it you're old enough, there used to be a kid's show on TV called Andy's Gang. There was a character called Froggy. He had a "magic twanger", and some other character would ask him to "Plunk your magic twanger Froggy." So, my friends call my AUS my magic twanger.

Trew said:

Progress Notes, Tuesday, Aug 31, 2010
I am greatly encouraged by the progress of two good forum buddies. They give me hope.

Tomorrow, Sept. 1 I return to U of MI to get my cath pulled. I have been warned: "You will run a lot when the cath comes out." that is the nature of the beast I am dealing with.

Looking at my U of MI papers I an scheduled for my next appointment with Dr Latini on Nov. 1 to have another cystoscopy. I am losing count of the number I have had this year already. The last one was done in the OR on Friday along with extensive cutting. I think this will be my 2nd or 3rd in the examine room in Nov.

IF no scar tissue reforms I can get scheduled for an AUS.

On top of all this I have a friend in Lansing who has just gone on hospice care. His ca (not prostate) has invaded his bones and other body tissues. He is sinking fast now.

Very sobering, all of this.

Skid Row and Hightide- thanks for hanging with this forum and sharing. I can hardly wait for my turn.

Hospitals
I've been in the hospital so damn much because of PC and its related problems, the nurses refer to me as a "frequent flyer".