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Broken VED

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User
Posted 23 Apr 2015 at 18:53
This morning the pump lever of my VED snapped rendering the device unusable. Has this happened to anyone else? What do you think my chances are of getting a replacement from my GP?

I will be contacting my GP but if for any reason he says no then of course I will buy a replacement myself as sadly it is still an essential item with my recovery. It is just as well it was just rehabilitation this morning rather than a planned romantic encounter - Lol - every cloud! ...

I realise that many on this forum face challenges that are much greater than mine so I hope you will not mind me making this post. Whilst so far it looks like the outlook PCa wise is good I am not complacent about this but I live in hope it will not return. For me PCa has been a life changing experience and an emotional journey. Do others feel this way? How do others deal with the emotional impact of it all? Should I have snapped out of it by now (29 months post op)?

As always your support on this forum is very much appreciated.

Best wishes to all.

User
Posted 03 May 2015 at 15:13

Hi all. Had a laugh at you making fun of the sensitive, patient Australian male. Lol Cheers Georgina

User
Posted 23 Apr 2015 at 20:27

Hi Rivertweed,

Is a VED a recovery pump of some sort?

What sort is it?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 23 Apr 2015 at 20:31
I have found that the impact has got more as time progresses .Incontinence being the main thing.Almost a year now and Sean still isn't dry.We are waiting to be referred to a surgeon forva possibe sling op.
User
Posted 23 Apr 2015 at 21:04

Hi rivertweed,

Is it still under some sort of warranty?

I would have thought that if you had one supplied under the NHS then it would be possible to get it replaced....

I bought mine privately, but it's only under a 1 year warranty I think...

I pretty much lead a 'normal' life now apart from needing assistance with ED and using a couple of pads every day...

Emotionally the main impact on me is continence issues as it's taking much longer than I had hoped for to get anywhere near dry, but as long as my PSA remains undetectable I can't complain too much and I will learn to live with it.



Hilarymeeghan.... Your Sean is not alone.......I'm now 10 months post op and still nowhere near dry...

On a recent routine review and PSA result with my urologist I explained to him that I've not made any progress since the start of the year with continence..

He did tell me that there was still time to improve over the next 8 months or so....but will be happy to refer me back to the team who operated on me for further advice if I wish ......
I will persevere with the PFE's ( although I'm not convinced they are helping in my case ) until the end of  this year and make a decision then depending on how things are....

Best Wishes

Luther

Edited by member 23 Apr 2015 at 21:15  | Reason: Not specified

User
Posted 23 Apr 2015 at 23:36

Maybe I am not the emotional type. Deal with problems and get on with it seems to have been my mantra most of my life. Although sex of any type is a rarity, and I have to exercise the old man with a pump, I have found sildenafil is beginning to work.

I still have to use a pad per day, but don't find it any great inconvenience. It is certainly tons better than 52 weeks ago when I had my catheter removed.

The way I look at it is that 50 years ago, I would not have been diagnosed before whilst the cancer was contained. The outlook would have been grim. I am financially secure, as content now as I have been in any part of my life, my 2 daughters are both doing well career wise and in strong relationships. Compared with many people, I am a very lucky lad.

Plus the fact that I am playing the most consistent golf of my life, although the OH, (not a golfer) retires next week. Things could change!!!!!

Stay Calm And Carry On.
User
Posted 23 Apr 2015 at 23:52

RT, your problem is solved. I can magic up a couple of VEDs, one of which I think is the correct fitting for your tube. Can you wait until June???

Edited by member 23 Apr 2015 at 23:52  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Apr 2015 at 07:39

Hi Riverweed,

I had a problem with my pump a few months ago, got in contact with the manufactures rep, (via email )who I had to see before getting it on prescription, told him of the malfunction, he in turn arranged replacement and freepost for the faulty part, 100% professional and nothing was too much trouble.

                                                                  Regards, john

 

      

User
Posted 24 Apr 2015 at 10:16

CB is right Hilary. When the hospitals gather & report their data on outcomes, the definition of continent is using one pad per day or less at 12 months post op. Tell him not to give up hope :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 May 2015 at 11:23

Originally Posted by: Online Community Member
I have been away for a few days without Internet connection so just catching up on recent posts.

I am pleased to report that my GP has agreed to replace the broken pump head. Happy days are here again!

Thank you Lyn for your offer of help, much appreciated.




Good news rivertweed!

A little less enthusiasm required with the replacement methinks.... http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

User
Posted 02 May 2015 at 17:08
Luther

I did think of that old joke about the definition of Australian foreplay (sorry Georgina if you read this)

Brace yourself Sheila!!

Xx

User
Posted 03 May 2015 at 10:57

LOL

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

Show Most Thanked Posts
User
Posted 23 Apr 2015 at 20:27

Hi Rivertweed,

Is a VED a recovery pump of some sort?

What sort is it?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 23 Apr 2015 at 20:31
I have found that the impact has got more as time progresses .Incontinence being the main thing.Almost a year now and Sean still isn't dry.We are waiting to be referred to a surgeon forva possibe sling op.
User
Posted 23 Apr 2015 at 20:55
Originally Posted by: Online Community Member
Hi Rivertweed,

Is a VED a recovery pump of some sort?

What sort is it?

dave

Apologies for not making this clearer. VED is a vacuum erection device, "Soma Erect Response". I obtained this on NHS about May 2013 to aid with penile rehabilitation.

User
Posted 23 Apr 2015 at 21:04

Hi rivertweed,

Is it still under some sort of warranty?

I would have thought that if you had one supplied under the NHS then it would be possible to get it replaced....

I bought mine privately, but it's only under a 1 year warranty I think...

I pretty much lead a 'normal' life now apart from needing assistance with ED and using a couple of pads every day...

Emotionally the main impact on me is continence issues as it's taking much longer than I had hoped for to get anywhere near dry, but as long as my PSA remains undetectable I can't complain too much and I will learn to live with it.



Hilarymeeghan.... Your Sean is not alone.......I'm now 10 months post op and still nowhere near dry...

On a recent routine review and PSA result with my urologist I explained to him that I've not made any progress since the start of the year with continence..

He did tell me that there was still time to improve over the next 8 months or so....but will be happy to refer me back to the team who operated on me for further advice if I wish ......
I will persevere with the PFE's ( although I'm not convinced they are helping in my case ) until the end of  this year and make a decision then depending on how things are....

Best Wishes

Luther

Edited by member 23 Apr 2015 at 21:15  | Reason: Not specified

User
Posted 23 Apr 2015 at 22:41

Rivertweed, are you coming to the Leicester meet-up?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Apr 2015 at 23:36

Maybe I am not the emotional type. Deal with problems and get on with it seems to have been my mantra most of my life. Although sex of any type is a rarity, and I have to exercise the old man with a pump, I have found sildenafil is beginning to work.

I still have to use a pad per day, but don't find it any great inconvenience. It is certainly tons better than 52 weeks ago when I had my catheter removed.

The way I look at it is that 50 years ago, I would not have been diagnosed before whilst the cancer was contained. The outlook would have been grim. I am financially secure, as content now as I have been in any part of my life, my 2 daughters are both doing well career wise and in strong relationships. Compared with many people, I am a very lucky lad.

Plus the fact that I am playing the most consistent golf of my life, although the OH, (not a golfer) retires next week. Things could change!!!!!

Stay Calm And Carry On.
User
Posted 23 Apr 2015 at 23:52

RT, your problem is solved. I can magic up a couple of VEDs, one of which I think is the correct fitting for your tube. Can you wait until June???

Edited by member 23 Apr 2015 at 23:52  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Apr 2015 at 04:58
Thank you for your honesty about incontinence. Sean thought he was the only one,as his consultant said 96%of men were dry at 6 months.
User
Posted 24 Apr 2015 at 06:44

Originally Posted by: Online Community Member
Thank you for your honesty about incontinence. Sean thought he was the only one,as his consultant said 96%of men were dry at 6 months.

I read on here some time ago that the NHS dictionary definition of "DRY" is using less than a pad a day.  If you consider that, then a lot of what you are told about treatment and recovery needs to be rethought, and looked up in the NHS dictionary?  Took me about 8 months to ditch the last security pad of my days.  I am still making progress with control, still the becoming rarer stress leak when digging or stretching and lifting, lifting at the gym is fine, 99% caught in time, and making improvements all the time.    

Rest assured, he is not the only one.

dave

 

 

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 24 Apr 2015 at 07:39

Hi Riverweed,

I had a problem with my pump a few months ago, got in contact with the manufactures rep, (via email )who I had to see before getting it on prescription, told him of the malfunction, he in turn arranged replacement and freepost for the faulty part, 100% professional and nothing was too much trouble.

                                                                  Regards, john

 

      

User
Posted 24 Apr 2015 at 10:16

CB is right Hilary. When the hospitals gather & report their data on outcomes, the definition of continent is using one pad per day or less at 12 months post op. Tell him not to give up hope :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 May 2015 at 22:20
I have been away for a few days without Internet connection so just catching up on recent posts.

I am pleased to report that my GP has agreed to replace the broken pump head. Happy days are here again!

Thank you Lyn for your offer of help, much appreciated.

User
Posted 02 May 2015 at 11:23

Originally Posted by: Online Community Member
I have been away for a few days without Internet connection so just catching up on recent posts.

I am pleased to report that my GP has agreed to replace the broken pump head. Happy days are here again!

Thank you Lyn for your offer of help, much appreciated.




Good news rivertweed!

A little less enthusiasm required with the replacement methinks.... http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

User
Posted 02 May 2015 at 17:08
Luther

I did think of that old joke about the definition of Australian foreplay (sorry Georgina if you read this)

Brace yourself Sheila!!

Xx

User
Posted 02 May 2015 at 17:43

Originally Posted by: Online Community Member
Luther
I did think of that old joke about the definition of Australian foreplay (sorry Georgina if you read this)


Brace yourself Sheila!!

Xx

 

Which is "?"

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 02 May 2015 at 21:15
Quote:
Quote:

Xx

Which is "?"

dave

Dave the joke was "brace yourself Sheila"

Do I really need to explain? Eeek

User
Posted 03 May 2015 at 10:57

LOL

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 03 May 2015 at 15:13

Hi all. Had a laugh at you making fun of the sensitive, patient Australian male. Lol Cheers Georgina

 
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