The Pad Diaries

Trew

hightide said:

Good luck and then Bad luck !!!!
Hey Trew; have not been able to get on the board for a few days. As you know I went to get my toys activated on Aug 11 when you went for your evaluation. I got a virus in my computer and was not able to see how your appt. went on the 11th. Sorry to hear what you found out. Hang in there and it has got to get better soon. I got half good news and half not so good. My 3 piece implant worked fine but my local urologist was not able to get the AUS to activate!!! He tried three or four times and said this is the first time he had not been able to activate one of these. He went and got one of his partners to come in and he also could not get it to work. He said he had a patient that has one put in at the Mayo Clinic in Jacksonville that he could not activate so he sent the guy back over to the Mayo and it worked the first time they tried. My doctor said lets give it tow more weeks so he is going to try again Aug 26 and if that does not work I may have to go back to Austin, Tx where I had mine installed. If it were not for bad luck, you and I would have no luck at All!!! We are boun to start getting a break SOON !!!!!!Regards,hightide

Well Here's to Luck!!
I almost wish I hadn't seen this post, Hightide. Now I have something else to worry about- a new AUS all nicely installed, and it doesn't work!! So they have to take it out and install another one! I think tonight I'll pass on sleeping. I can only imagine very bad dreams tonight.

Setting all that aside, may we both end up in the daylight of all this soon.

Trew

hightide said:

Good luck and then Bad luck !!!!
Hey Trew; have not been able to get on the board for a few days. As you know I went to get my toys activated on Aug 11 when you went for your evaluation. I got a virus in my computer and was not able to see how your appt. went on the 11th. Sorry to hear what you found out. Hang in there and it has got to get better soon. I got half good news and half not so good. My 3 piece implant worked fine but my local urologist was not able to get the AUS to activate!!! He tried three or four times and said this is the first time he had not been able to activate one of these. He went and got one of his partners to come in and he also could not get it to work. He said he had a patient that has one put in at the Mayo Clinic in Jacksonville that he could not activate so he sent the guy back over to the Mayo and it worked the first time they tried. My doctor said lets give it tow more weeks so he is going to try again Aug 26 and if that does not work I may have to go back to Austin, Tx where I had mine installed. If it were not for bad luck, you and I would have no luck at All!!! We are boun to start getting a break SOON !!!!!!Regards,hightide

Well Here's to Luck!!
empty post....sorry

Trew

hightide said:

Good luck and then Bad luck !!!!
Hey Trew; have not been able to get on the board for a few days. As you know I went to get my toys activated on Aug 11 when you went for your evaluation. I got a virus in my computer and was not able to see how your appt. went on the 11th. Sorry to hear what you found out. Hang in there and it has got to get better soon. I got half good news and half not so good. My 3 piece implant worked fine but my local urologist was not able to get the AUS to activate!!! He tried three or four times and said this is the first time he had not been able to activate one of these. He went and got one of his partners to come in and he also could not get it to work. He said he had a patient that has one put in at the Mayo Clinic in Jacksonville that he could not activate so he sent the guy back over to the Mayo and it worked the first time they tried. My doctor said lets give it tow more weeks so he is going to try again Aug 26 and if that does not work I may have to go back to Austin, Tx where I had mine installed. If it were not for bad luck, you and I would have no luck at All!!! We are boun to start getting a break SOON !!!!!!Regards,hightide

Well Here's to Luck!!
Computer problems- double post....

sorry

hightide

Skid Row Tom said:

Activating the AUS
Do you have the "owner's manual" for this? The instructions tell you how to activate it. In fact, it's not unusual for a wearer to turn it off at night (some feel turning it off gives the tissues a chance to rest and lessens the chance of tissue erosion). I keep mine activated at all times. Unless the button is stuck, you should be able to do it yourself. The directions say, "Push deactivation button a few times to lossen poppet. Then give the pump bulb a quick, forceful squeeze." There are three optional methods if the "normal" method doesn't work. Call 952-930-6261 for the Patient Liaison and they'll FAX or mail you the "Patient Information and Instructions for the AMS Sphincter 800 Urinary Control System".

Geez, it just doesn't let up with PC, does it?

Activating the AUS
Hi Tom, thanks for you post. I went on line right after I got home from the first failed attempt. I was able to find the complete operating room instructions and printed the pages that talk about all three of the other methods of activation. I will be taking them to the appt. on Aug. 26. I sure hope one of them works !!!!
Regards, hightide

hightide

Trew said:

Well Here's to Luck!!
I almost wish I hadn't seen this post, Hightide. Now I have something else to worry about- a new AUS all nicely installed, and it doesn't work!! So they have to take it out and install another one! I think tonight I'll pass on sleeping. I can only imagine very bad dreams tonight.

Setting all that aside, may we both end up in the daylight of all this soon.

Well Here's to Luck
I sure hope I didn't make you miss a nights sleep. I fell sure it is just going to work on the 26th. (I hope). See the post above that I left for Tom. I have the instructions for all of the other methods and will be taking them with me.
Regards, hightide

Trew

Tuesday, Aug. 24, 2010
I recevied a letter from Dr. Latini from U of MI yesterday summerizing my visit with her.

It was a very good letter, lots of details. My case is "complex" as she told me in the examine room.

I have a urethrotomy scheduled for this Friday, Aug. 27.

I will have a cath in for 5 days afterwards. Then she wants me to self cath 2x a day for a length of time to keep the urethra open.

In her letter she states the urethrotomy may have to be done a number of times before the scarring is stablized.

New vocabulary for me from the visit and the letter: ileal conduit diversion. Dr Latini explained this to me and wanted me to know this could be a possibilty if the urethra tissue doesn't stablize. That was the term that sent me into crash and burn after the last visit. And the letter restates what she told me- for me there is no fast fix. An AUS is not in my immediate future but a good possiblity down the line which is not a good line to walk sometimes.

Right now I am a bit anxious over all of this. I do not want to wear an external urine bag. I do pray right now that this first urethotomy may be successful.

Surgery and radiation can sometimes cause complications.

So i guess the future begins again for me on Friday. I sure would like to keep my urethra. Really.

My spirit is finally rallying to my support. Maybe the Eligard's baineful influence is waning finally. I have got myself into a fine kettle of fish this time, but with the Lord's help maybe I will get out of it without being cooked, too.

Life goes on.

mrshisname

Trew said:

Tuesday, Aug. 24, 2010
I recevied a letter from Dr. Latini from U of MI yesterday summerizing my visit with her.

It was a very good letter, lots of details. My case is "complex" as she told me in the examine room.

I have a urethrotomy scheduled for this Friday, Aug. 27.

I will have a cath in for 5 days afterwards. Then she wants me to self cath 2x a day for a length of time to keep the urethra open.

In her letter she states the urethrotomy may have to be done a number of times before the scarring is stablized.

New vocabulary for me from the visit and the letter: ileal conduit diversion. Dr Latini explained this to me and wanted me to know this could be a possibilty if the urethra tissue doesn't stablize. That was the term that sent me into crash and burn after the last visit. And the letter restates what she told me- for me there is no fast fix. An AUS is not in my immediate future but a good possiblity down the line which is not a good line to walk sometimes.

Right now I am a bit anxious over all of this. I do not want to wear an external urine bag. I do pray right now that this first urethotomy may be successful.

Surgery and radiation can sometimes cause complications.

So i guess the future begins again for me on Friday. I sure would like to keep my urethra. Really.

My spirit is finally rallying to my support. Maybe the Eligard's baineful influence is waning finally. I have got myself into a fine kettle of fish this time, but with the Lord's help maybe I will get out of it without being cooked, too.

Life goes on.

Prayers
I will pray for no ileo conduit. Hope that all goes well and please do keep us posted.
I couldn't help but think of you yesterday while at the doctor. I have rheumatoid arthritis and got my money's worth yesterday. Thought to myself 'Trew would say aren't I lucky, I got to have all this done". Thanks for giving me a sense of humor about it.
Best wishes and god speed.

Trew

mrshisname said:

Prayers
I will pray for no ileo conduit. Hope that all goes well and please do keep us posted.
I couldn't help but think of you yesterday while at the doctor. I have rheumatoid arthritis and got my money's worth yesterday. Thought to myself 'Trew would say aren't I lucky, I got to have all this done". Thanks for giving me a sense of humor about it.
Best wishes and god speed.

No ileal conduit this week (I hope)
Mrs., thanks for reminding me how lucky I am. I had almost forgotten! LOL

I am concerned. I see how well your husband is doing. How well others are doing and I keep running into down chuts instead of up ladders- you do know that game don't you? At times I am a bit envious. I was out with my backpacking buddy tonight doing some shopping with him as he prepares for another back pack trip. I may not get out again for a long time. I miss it greatly.

Well, when they wheel me into the OR room I will politely say, "Please, don't hurt me," LOL then fall asleep. When I wake up there will be a cath in, again, so its like getting back to where I started 18 months ago. I just have to ask, "Will the circle be unbroken?"

"Please, sir, I have had enough, thank-you. May I go home now?" says Trew hopefully.

Well, see what next week brings. There is always another week, something to experience. I am learning so much. Like the word "ileal conduit." Now there is a word to drain the xanax bottle with.

hightide

Trew said:

No ileal conduit this week (I hope)
Mrs., thanks for reminding me how lucky I am. I had almost forgotten! LOL

I am concerned. I see how well your husband is doing. How well others are doing and I keep running into down chuts instead of up ladders- you do know that game don't you? At times I am a bit envious. I was out with my backpacking buddy tonight doing some shopping with him as he prepares for another back pack trip. I may not get out again for a long time. I miss it greatly.

Well, when they wheel me into the OR room I will politely say, "Please, don't hurt me," LOL then fall asleep. When I wake up there will be a cath in, again, so its like getting back to where I started 18 months ago. I just have to ask, "Will the circle be unbroken?"

"Please, sir, I have had enough, thank-you. May I go home now?" says Trew hopefully.

Well, see what next week brings. There is always another week, something to experience. I am learning so much. Like the word "ileal conduit." Now there is a word to drain the xanax bottle with.

( I hope )
Trew, I just have a feeling that you and I will catch a good break, (lord knows we are both long overdue!!!) Wishing you all the best this friday.

I hope I will have good news to report after my 8:30am appt. in the morning. I will either be DRY or headed back to Austin, TX . and that is 950 miles away.

Regards, hightide

Trew

hightide said:

( I hope )
Trew, I just have a feeling that you and I will catch a good break, (lord knows we are both long overdue!!!) Wishing you all the best this friday.

I hope I will have good news to report after my 8:30am appt. in the morning. I will either be DRY or headed back to Austin, TX . and that is 950 miles away.

Regards, hightide

Here is to Hope!!
Hightide- is that 8:30 appointment today or on the 26th? I do wish you well. Like enough is enough already for both of us. Like you said, we both need to catch a good break soon.

And about those 950 miles one way- that is one nice tax deduction if you itemize!!

I hope it doesn't come to that, though. As much as both of us enjoy medical procedures, they do start getting a bit of a bore after so many.

hightide

Trew said:

Here is to Hope!!
Hightide- is that 8:30 appointment today or on the 26th? I do wish you well. Like enough is enough already for both of us. Like you said, we both need to catch a good break soon.

And about those 950 miles one way- that is one nice tax deduction if you itemize!!

I hope it doesn't come to that, though. As much as both of us enjoy medical procedures, they do start getting a bit of a bore after so many.

Here is a second to Hope !!
Trew- The 8:30 appt. is Thur. morning the 26th. And yes, that 950 miles is one way!! We drove out there and had the implants put in and my wife was to drive us back. Had them put in on Tue. morning June 22nd and my wife got sick on the 24th so I drove us home on the 25th.
That was not a fun trip!!! I will gladly give up the tax break if we can get it to working in the morning. Good luck to you and I hope I get good news in the morning!!!!!

griff 1

Trew said:

No ileal conduit this week (I hope)
Mrs., thanks for reminding me how lucky I am. I had almost forgotten! LOL

I am concerned. I see how well your husband is doing. How well others are doing and I keep running into down chuts instead of up ladders- you do know that game don't you? At times I am a bit envious. I was out with my backpacking buddy tonight doing some shopping with him as he prepares for another back pack trip. I may not get out again for a long time. I miss it greatly.

Well, when they wheel me into the OR room I will politely say, "Please, don't hurt me," LOL then fall asleep. When I wake up there will be a cath in, again, so its like getting back to where I started 18 months ago. I just have to ask, "Will the circle be unbroken?"

"Please, sir, I have had enough, thank-you. May I go home now?" says Trew hopefully.

Well, see what next week brings. There is always another week, something to experience. I am learning so much. Like the word "ileal conduit." Now there is a word to drain the xanax bottle with.

trew
goodluck on the up coming surgery, just to let you know that your post,s have helped me alot and i,m sure alot of others. my surgery on june 23rd went well and still waiting for the 3 month test. been getting sharp pains down in the area were my surgery was, i hope just healing pain or something. your goodluck charm will come soon for sure. griff

griff 1

hightide said:

( I hope )
Trew, I just have a feeling that you and I will catch a good break, (lord knows we are both long overdue!!!) Wishing you all the best this friday.

I hope I will have good news to report after my 8:30am appt. in the morning. I will either be DRY or headed back to Austin, TX . and that is 950 miles away.

Regards, hightide

luck
goodluck to you also hightide, i hope all goes well for you. GRIFF

hightide

griff 1 said:

luck
goodluck to you also hightide, i hope all goes well for you. GRIFF

luck
Griff, thanks for the support. As a matter of fact, thanks to all for good luck for Trew and myself!!! Support is why we are all on these discussion boards.Thanks everyone!!!
Will be leaving for my appt in about 45 min. Hope to be back on here later today with GOOD NEWS. Regards, hightide

ejn

griff 1 said:

trew
goodluck on the up coming surgery, just to let you know that your post,s have helped me alot and i,m sure alot of others. my surgery on june 23rd went well and still waiting for the 3 month test. been getting sharp pains down in the area were my surgery was, i hope just healing pain or something. your goodluck charm will come soon for sure. griff

Trew,
Good luck to you tomorrow. You are over due for good things and this will be the start. Hopefully the AUS will come sooner than later...you deserve it. I will be thinking of you tomorrow. When my cath came out a week ago I was thinking about you when I was sitting in the room waiting for the nurse to pull the snake out.

Ed

Trew

ejn said:

Trew,
Good luck to you tomorrow. You are over due for good things and this will be the start. Hopefully the AUS will come sooner than later...you deserve it. I will be thinking of you tomorrow. When my cath came out a week ago I was thinking about you when I was sitting in the room waiting for the nurse to pull the snake out.

Ed

3rd time Coming Up
Thank-you, Ed.

I report to UM hospital at 11: 30 tomorrow (Fri., Aug 27).

Surgery is at 1: 30.

This will be the 3rd time I will have my urethra opened this summer- the 3rd time!! Only this time more extensively. You guys who only get it once- Bah-humbug to that! And some of you have never been bored out- you just don't know what you are missing!

I wonder if cath bags can be found in decorative colors? I get 5 more days of THAT to look forward too.

Now someone tell me this is just a simple cancer.

lewvino

Trew said:

3rd time Coming Up
Thank-you, Ed.

I report to UM hospital at 11: 30 tomorrow (Fri., Aug 27).

Surgery is at 1: 30.

This will be the 3rd time I will have my urethra opened this summer- the 3rd time!! Only this time more extensively. You guys who only get it once- Bah-humbug to that! And some of you have never been bored out- you just don't know what you are missing!

I wonder if cath bags can be found in decorative colors? I get 5 more days of THAT to look forward too.

Now someone tell me this is just a simple cancer.

Is it scheduled as 'day'
Is it scheduled as 'day' surgery or do you have to spend the night?
Larry

Trew

lewvino said:

Is it scheduled as 'day'
Is it scheduled as 'day' surgery or do you have to spend the night?
Larry

DVIU
Larry, I'll be home tomorrow evening.

The procedure is a DVIU: "Direct vison internal urethrotomy through a scope in the operating room with anesthesia." That is taken directly from the letter from Dr Latini. She also states in the leter this may have to be done a nuber of times.

From the letter: "It is unclear at this time how Mr. Trew's stricture and incontinence will stablize with time." She then restates what she told me in person, that the situation is very complex and could heal with one procedure or end up with an ilead conduit diversion.

Tomorrow is a very important day. Dr Latini wants to get a good visual of exactly what we are dealing with- a combination of stricture and contracture.

Gentleman, it is going to be an interesting day tomorrow. If anyone wants to exchange places with me, please ocntact be before 9 am tomorrow. Please. I do not want to keep all this to myself. I am trying to figure out what Tom Sawyer would do with this kind of problem. Any suggestions?

griff 1

Trew said:

3rd time Coming Up
Thank-you, Ed.

I report to UM hospital at 11: 30 tomorrow (Fri., Aug 27).

Surgery is at 1: 30.

This will be the 3rd time I will have my urethra opened this summer- the 3rd time!! Only this time more extensively. You guys who only get it once- Bah-humbug to that! And some of you have never been bored out- you just don't know what you are missing!

I wonder if cath bags can be found in decorative colors? I get 5 more days of THAT to look forward too.

Now someone tell me this is just a simple cancer.

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

JR1949

Trew said:

DVIU
Larry, I'll be home tomorrow evening.

The procedure is a DVIU: "Direct vison internal urethrotomy through a scope in the operating room with anesthesia." That is taken directly from the letter from Dr Latini. She also states in the leter this may have to be done a nuber of times.

From the letter: "It is unclear at this time how Mr. Trew's stricture and incontinence will stablize with time." She then restates what she told me in person, that the situation is very complex and could heal with one procedure or end up with an ilead conduit diversion.

Tomorrow is a very important day. Dr Latini wants to get a good visual of exactly what we are dealing with- a combination of stricture and contracture.

Gentleman, it is going to be an interesting day tomorrow. If anyone wants to exchange places with me, please ocntact be before 9 am tomorrow. Please. I do not want to keep all this to myself. I am trying to figure out what Tom Sawyer would do with this kind of problem. Any suggestions?

Hope All Went Well
Trew, Hope all went well with your procedure today. I haven't been on this network recently. You are in my thoughts and prayers.

Sorry but I don't know what Tom Sawyer would do with this kind of problem.

Just remember, Wag More and Bark Less.

JR