Vagueness and the Aftermath - A sporadic diary

[nirvana]

What exactly is a VAD and why do you have one?

It's one of these - remedy for heart failure to keep you going until you can get a transplant
https://en.wikipedia.org/wiki/Ventricular_assist_device

I've been thinking about this all night. What a concept it really is.

I have some questions but it would probably be rude to just blurt them out.

Blurt away, we all like talking about ourselves :-) Don't talk about it much these days and many newer people I work with don't know - they just think the handbag I carry around is an affectation

[RED-DOG]

OK here goes, please feel free to add extra detail, use separate posts for different questions, or answer questions I'm too dumb to ask.

Do you have a RVAD, a LVAD or a BiVAD?

I'm assuming, even though you have had yours for over 8 years, it was intended as a bridge?

How does the power supply and the connection work, and what are the worst drawbacks, for instance, how long between charges?

Does it rev up and slow down with your level of activity?

If the VAD fails is it WP GG?

If you could have the transplant now (Without waiting to get sick obv) or would you carry on as you are?

[vegaslover]

I don't wear shoes indoors at all, so hoping I don't suffer with pf in the future.

Worst pain for me as an adult is either chronic toothache, for which I took ridic amounts of prescribed painkillers with no effect, or treatment after breaking my leg

[RED-DOG]

Also Glen, something as huge as VAD must bring with it an acute sense of your own mortality. How have you coped with that? Has it changed your outlook on life and if so is it for the better or worse overall?

[nirvana]

Also Glen, something as huge as VAD must bring with it an acute sense of your own mortality. How have you coped with that? Has it changed your outlook on life and if so is it for the better or worse overall?

Interesting question this - I was hospitalised for a month or so before the operation. Was in pretty bad condition and for the last 10 days or so I had an aortic balloon pump fitted to pump blood enough to get some better function from all the organs to get fit enough for an operation.

In hindsight, and also since then, I think I'm actually hard as nails and pretty resilient. Pre-op I had moments of melancholy, considering what I knew I would miss (too many to list) and things I would never see (kids getting married, grandchildren). But I don't ever remember being fearful, either of the operation or dying. On the slightly fatalistic side, dying on the operating table seemed like a pretty decent and fear free way to go versus the quality of life I had experienced in the 3 months up to the op.

The main change in outlook is that I am a little more pre-occupied with our family financial situation in the event that I die - something 8 years ago I never worried about too much as I'd always earned well and made money fairly readily. For example, I keep working today because there's a pretty decent death in service benefit. I assume many people would stop work and live it up a bit in the knowledge that their days are somewhat numbered. I've never had a bucket list and always felt pretty contented with my life and what I've done. If I'd really wanted to do something, I'd have probably done it before now so I can't magic up a set of experiences that I want just because of the current situation.

I know that a number of patients find the whole thing extremely depressing and there are a lot of support services available that I have never felt I need to avail myself of. I've never felt like that. At the time I was discharged I was the fastest release after the op in the UK at that time - something like 17 days, memory fades, but I was ludicrously pleased with myself at the time. Have had a few complications since with a few short periods of hospitalisation but nothing for 3-4 years now. Just clinics every 3 months and an annual right heart catheter check in theatre. Bizarrely, though short of being institutionalised I think, I quite enjoy the clinics and the theatre experience each year. I feel like the red carpet is rolled out and I get to see some of the nurses that helped me way back then. Feels like a short (one day) holiday each time I go.

Overall, the experience has made me a better person imo. Whilst I don't have a bucket list and I'm not busy chalking up amazing experiences, I think I do feel a heightened sense of enjoyment and pleasure from small things, everyday stuff and, especially, family related things.

And finally, while conscious of death, I don't really meditate on it. I'm very happy that I've had this extra time to make amends for some things (if you ever really can) and massively improve some situations compared with where they were 8 years ago.

Long but, like I said, we all like talking about ourselves given the chance :-)





 

[RED-DOG]

Also Glen, something as huge as VAD must bring with it an acute sense of your own mortality. How have you coped with that? Has it changed your outlook on life and if so is it for the better or worse overall?

Interesting question this - I was hospitalised for a month or so before the operation. Was in pretty bad condition and for the last 10 days or so I had an aortic balloon pump fitted to pump blood enough to get some better function from all the organs to get fit enough for an operation.

In hindsight, and also since then, I think I'm actually hard as nails and pretty resilient. Pre-op I had moments of melancholy, considering what I knew I would miss (too many to list) and things I would never see (kids getting married, grandchildren). But I don't ever remember being fearful, either of the operation or dying. On the slightly fatalistic side, dying on the operating table seemed like a pretty decent and fear free way to go versus the quality of life I had experienced in the 3 months up to the op.

The main change in outlook is that I am a little more pre-occupied with our family financial situation in the event that I die - something 8 years ago I never worried about too much as I'd always earned well and made money fairly readily. For example, I keep working today because there's a pretty decent death in service benefit. I assume many people would stop work and live it up a bit in the knowledge that their days are somewhat numbered. I've never had a bucket list and always felt pretty contented with my life and what I've done. If I'd really wanted to do something, I'd have probably done it before now so I can't magic up a set of experiences that I want just because of the current situation.

I know that a number of patients find the whole thing extremely depressing and there are a lot of support services available that I have never felt I need to avail myself of. I've never felt like that. At the time I was discharged I was the fastest release after the op in the UK at that time - something like 17 days, memory fades, but I was ludicrously pleased with myself at the time. Have had a few complications since with a few short periods of hospitalisation but nothing for 3-4 years now. Just clinics every 3 months and an annual right heart catheter check in theatre. Bizarrely, though short of being institutionalised I think, I quite enjoy the clinics and the theatre experience each year. I feel like the red carpet is rolled out and I get to see some of the nurses that helped me way back then. Feels like a short (one day) holiday each time I go.

Overall, the experience has made me a better person imo. Whilst I don't have a bucket list and I'm not busy chalking up amazing experiences, I think I do feel a heightened sense of enjoyment and pleasure from small things, everyday stuff and, especially, family related things.

And finally, while conscious of death, I don't really meditate on it. I'm very happy that I've had this extra time to make amends for some things (if you ever really can) and massively improve some situations compared with where they were 8 years ago.

Long but, like I said, we all like talking about ourselves given the chance :-)


 

Probably one of the best posts ever Glen. Thank you for sharing.

[Doobs]

Also Glen, something as huge as VAD must bring with it an acute sense of your own mortality. How have you coped with that? Has it changed your outlook on life and if so is it for the better or worse overall?

Interesting question this - I was hospitalised for a month or so before the operation. Was in pretty bad condition and for the last 10 days or so I had an aortic balloon pump fitted to pump blood enough to get some better function from all the organs to get fit enough for an operation.

In hindsight, and also since then, I think I'm actually hard as nails and pretty resilient. Pre-op I had moments of melancholy, considering what I knew I would miss (too many to list) and things I would never see (kids getting married, grandchildren). But I don't ever remember being fearful, either of the operation or dying. On the slightly fatalistic side, dying on the operating table seemed like a pretty decent and fear free way to go versus the quality of life I had experienced in the 3 months up to the op.

The main change in outlook is that I am a little more pre-occupied with our family financial situation in the event that I die - something 8 years ago I never worried about too much as I'd always earned well and made money fairly readily. For example, I keep working today because there's a pretty decent death in service benefit. I assume many people would stop work and live it up a bit in the knowledge that their days are somewhat numbered. I've never had a bucket list and always felt pretty contented with my life and what I've done. If I'd really wanted to do something, I'd have probably done it before now so I can't magic up a set of experiences that I want just because of the current situation.

I know that a number of patients find the whole thing extremely depressing and there are a lot of support services available that I have never felt I need to avail myself of. I've never felt like that. At the time I was discharged I was the fastest release after the op in the UK at that time - something like 17 days, memory fades, but I was ludicrously pleased with myself at the time. Have had a few complications since with a few short periods of hospitalisation but nothing for 3-4 years now. Just clinics every 3 months and an annual right heart catheter check in theatre. Bizarrely, though short of being institutionalised I think, I quite enjoy the clinics and the theatre experience each year. I feel like the red carpet is rolled out and I get to see some of the nurses that helped me way back then. Feels like a short (one day) holiday each time I go.

Overall, the experience has made me a better person imo. Whilst I don't have a bucket list and I'm not busy chalking up amazing experiences, I think I do feel a heightened sense of enjoyment and pleasure from small things, everyday stuff and, especially, family related things.

And finally, while conscious of death, I don't really meditate on it. I'm very happy that I've had this extra time to make amends for some things (if you ever really can) and massively improve some situations compared with where they were 8 years ago.

Long but, like I said, we all like talking about ourselves given the chance :-)


 

Probably one of the best posts ever Glen. Thank you for sharing.

Agreed, there have been some great posts on your diary over the last few days. 

Glen.  Do you have to sleep in a set position and do you wake up tangled in hoses or waking yourself up having rolled on your machine?   Is it possible to disconnect stuff in your sleep?

I have a CPAP and definitely need it, but find myself tangled up if I turn on the "wrong" side, and sometimes pull my mask off without been fully conscious

Cheers

[tikay]

That's a terrific post by Glenda, really terrific, & as Doobs noted, there have been some really interesting stuff on the Cup Of Tea Diary this week.  

[typhoon13]

Also Glen, something as huge as VAD must bring with it an acute sense of your own mortality. How have you coped with that? Has it changed your outlook on life and if so is it for the better or worse overall?

Interesting question this - I was hospitalised for a month or so before the operation. Was in pretty bad condition and for the last 10 days or so I had an aortic balloon pump fitted to pump blood enough to get some better function from all the organs to get fit enough for an operation.

In hindsight, and also since then, I think I'm actually hard as nails and pretty resilient. Pre-op I had moments of melancholy, considering what I knew I would miss (too many to list) and things I would never see (kids getting married, grandchildren). But I don't ever remember being fearful, either of the operation or dying. On the slightly fatalistic side, dying on the operating table seemed like a pretty decent and fear free way to go versus the quality of life I had experienced in the 3 months up to the op.

The main change in outlook is that I am a little more pre-occupied with our family financial situation in the event that I die - something 8 years ago I never worried about too much as I'd always earned well and made money fairly readily. For example, I keep working today because there's a pretty decent death in service benefit. I assume many people would stop work and live it up a bit in the knowledge that their days are somewhat numbered. I've never had a bucket list and always felt pretty contented with my life and what I've done. If I'd really wanted to do something, I'd have probably done it before now so I can't magic up a set of experiences that I want just because of the current situation.

I know that a number of patients find the whole thing extremely depressing and there are a lot of support services available that I have never felt I need to avail myself of. I've never felt like that. At the time I was discharged I was the fastest release after the op in the UK at that time - something like 17 days, memory fades, but I was ludicrously pleased with myself at the time. Have had a few complications since with a few short periods of hospitalisation but nothing for 3-4 years now. Just clinics every 3 months and an annual right heart catheter check in theatre. Bizarrely, though short of being institutionalised I think, I quite enjoy the clinics and the theatre experience each year. I feel like the red carpet is rolled out and I get to see some of the nurses that helped me way back then. Feels like a short (one day) holiday each time I go.

Overall, the experience has made me a better person imo. Whilst I don't have a bucket list and I'm not busy chalking up amazing experiences, I think I do feel a heightened sense of enjoyment and pleasure from small things, everyday stuff and, especially, family related things.

And finally, while conscious of death, I don't really meditate on it. I'm very happy that I've had this extra time to make amends for some things (if you ever really can) and massively improve some situations compared with where they were 8 years ago.

Long but, like I said, we all like talking about ourselves given the chance :-)


 

Probably one of the best posts ever Glen. Thank you for sharing.

I will second that

Excellent post Glen

[RED-DOG]

Also Glen, something as huge as VAD must bring with it an acute sense of your own mortality. How have you coped with that? Has it changed your outlook on life and if so is it for the better or worse overall?

Interesting question this - I was hospitalised for a month or so before the operation. Was in pretty bad condition and for the last 10 days or so I had an aortic balloon pump fitted to pump blood enough to get some better function from all the organs to get fit enough for an operation.

In hindsight, and also since then, I think I'm actually hard as nails and pretty resilient. Pre-op I had moments of melancholy, considering what I knew I would miss (too many to list) and things I would never see (kids getting married, grandchildren). But I don't ever remember being fearful, either of the operation or dying. On the slightly fatalistic side, dying on the operating table seemed like a pretty decent and fear free way to go versus the quality of life I had experienced in the 3 months up to the op.

The main change in outlook is that I am a little more pre-occupied with our family financial situation in the event that I die - something 8 years ago I never worried about too much as I'd always earned well and made money fairly readily. For example, I keep working today because there's a pretty decent death in service benefit. I assume many people would stop work and live it up a bit in the knowledge that their days are somewhat numbered. I've never had a bucket list and always felt pretty contented with my life and what I've done. If I'd really wanted to do something, I'd have probably done it before now so I can't magic up a set of experiences that I want just because of the current situation.

I know that a number of patients find the whole thing extremely depressing and there are a lot of support services available that I have never felt I need to avail myself of. I've never felt like that. At the time I was discharged I was the fastest release after the op in the UK at that time - something like 17 days, memory fades, but I was ludicrously pleased with myself at the time. Have had a few complications since with a few short periods of hospitalisation but nothing for 3-4 years now. Just clinics every 3 months and an annual right heart catheter check in theatre. Bizarrely, though short of being institutionalised I think, I quite enjoy the clinics and the theatre experience each year. I feel like the red carpet is rolled out and I get to see some of the nurses that helped me way back then. Feels like a short (one day) holiday each time I go.

Overall, the experience has made me a better person imo. Whilst I don't have a bucket list and I'm not busy chalking up amazing experiences, I think I do feel a heightened sense of enjoyment and pleasure from small things, everyday stuff and, especially, family related things.

And finally, while conscious of death, I don't really meditate on it. I'm very happy that I've had this extra time to make amends for some things (if you ever really can) and massively improve some situations compared with where they were 8 years ago.

Long but, like I said, we all like talking about ourselves given the chance :-)


 

Probably one of the best posts ever Glen. Thank you for sharing.

Agreed, there have been some great posts on your diary over the last few days. 

Glen.  Do you have to sleep in a set position and do you wake up tangled in hoses or waking yourself up having rolled on your machine?   Is it possible to disconnect stuff in your sleep?

I have a CPAP and definitely need it, but find myself tangled up if I turn on the "wrong" side, and sometimes pull my mask off without been fully conscious

Cheers

CPAP. Is that for sleep apnoea Doobs?

[Doobs]

Also Glen, something as huge as VAD must bring with it an acute sense of your own mortality. How have you coped with that? Has it changed your outlook on life and if so is it for the better or worse overall?

Interesting question this - I was hospitalised for a month or so before the operation. Was in pretty bad condition and for the last 10 days or so I had an aortic balloon pump fitted to pump blood enough to get some better function from all the organs to get fit enough for an operation.

In hindsight, and also since then, I think I'm actually hard as nails and pretty resilient. Pre-op I had moments of melancholy, considering what I knew I would miss (too many to list) and things I would never see (kids getting married, grandchildren). But I don't ever remember being fearful, either of the operation or dying. On the slightly fatalistic side, dying on the operating table seemed like a pretty decent and fear free way to go versus the quality of life I had experienced in the 3 months up to the op.

The main change in outlook is that I am a little more pre-occupied with our family financial situation in the event that I die - something 8 years ago I never worried about too much as I'd always earned well and made money fairly readily. For example, I keep working today because there's a pretty decent death in service benefit. I assume many people would stop work and live it up a bit in the knowledge that their days are somewhat numbered. I've never had a bucket list and always felt pretty contented with my life and what I've done. If I'd really wanted to do something, I'd have probably done it before now so I can't magic up a set of experiences that I want just because of the current situation.

I know that a number of patients find the whole thing extremely depressing and there are a lot of support services available that I have never felt I need to avail myself of. I've never felt like that. At the time I was discharged I was the fastest release after the op in the UK at that time - something like 17 days, memory fades, but I was ludicrously pleased with myself at the time. Have had a few complications since with a few short periods of hospitalisation but nothing for 3-4 years now. Just clinics every 3 months and an annual right heart catheter check in theatre. Bizarrely, though short of being institutionalised I think, I quite enjoy the clinics and the theatre experience each year. I feel like the red carpet is rolled out and I get to see some of the nurses that helped me way back then. Feels like a short (one day) holiday each time I go.

Overall, the experience has made me a better person imo. Whilst I don't have a bucket list and I'm not busy chalking up amazing experiences, I think I do feel a heightened sense of enjoyment and pleasure from small things, everyday stuff and, especially, family related things.

And finally, while conscious of death, I don't really meditate on it. I'm very happy that I've had this extra time to make amends for some things (if you ever really can) and massively improve some situations compared with where they were 8 years ago.

Long but, like I said, we all like talking about ourselves given the chance :-)


 

Probably one of the best posts ever Glen. Thank you for sharing.

Agreed, there have been some great posts on your diary over the last few days. 

Glen.  Do you have to sleep in a set position and do you wake up tangled in hoses or waking yourself up having rolled on your machine?   Is it possible to disconnect stuff in your sleep?

I have a CPAP and definitely need it, but find myself tangled up if I turn on the "wrong" side, and sometimes pull my mask off without been fully conscious

Cheers

CPAP. Is that for sleep apnoea Doobs?

That is right Tom.

[nirvana]

Also Glen, something as huge as VAD must bring with it an acute sense of your own mortality. How have you coped with that? Has it changed your outlook on life and if so is it for the better or worse overall?

Interesting question this - I was hospitalised for a month or so before the operation. Was in pretty bad condition and for the last 10 days or so I had an aortic balloon pump fitted to pump blood enough to get some better function from all the organs to get fit enough for an operation.

In hindsight, and also since then, I think I'm actually hard as nails and pretty resilient. Pre-op I had moments of melancholy, considering what I knew I would miss (too many to list) and things I would never see (kids getting married, grandchildren). But I don't ever remember being fearful, either of the operation or dying. On the slightly fatalistic side, dying on the operating table seemed like a pretty decent and fear free way to go versus the quality of life I had experienced in the 3 months up to the op.

The main change in outlook is that I am a little more pre-occupied with our family financial situation in the event that I die - something 8 years ago I never worried about too much as I'd always earned well and made money fairly readily. For example, I keep working today because there's a pretty decent death in service benefit. I assume many people would stop work and live it up a bit in the knowledge that their days are somewhat numbered. I've never had a bucket list and always felt pretty contented with my life and what I've done. If I'd really wanted to do something, I'd have probably done it before now so I can't magic up a set of experiences that I want just because of the current situation.

I know that a number of patients find the whole thing extremely depressing and there are a lot of support services available that I have never felt I need to avail myself of. I've never felt like that. At the time I was discharged I was the fastest release after the op in the UK at that time - something like 17 days, memory fades, but I was ludicrously pleased with myself at the time. Have had a few complications since with a few short periods of hospitalisation but nothing for 3-4 years now. Just clinics every 3 months and an annual right heart catheter check in theatre. Bizarrely, though short of being institutionalised I think, I quite enjoy the clinics and the theatre experience each year. I feel like the red carpet is rolled out and I get to see some of the nurses that helped me way back then. Feels like a short (one day) holiday each time I go.

Overall, the experience has made me a better person imo. Whilst I don't have a bucket list and I'm not busy chalking up amazing experiences, I think I do feel a heightened sense of enjoyment and pleasure from small things, everyday stuff and, especially, family related things.

And finally, while conscious of death, I don't really meditate on it. I'm very happy that I've had this extra time to make amends for some things (if you ever really can) and massively improve some situations compared with where they were 8 years ago.

Long but, like I said, we all like talking about ourselves given the chance :-)


 

Probably one of the best posts ever Glen. Thank you for sharing.

Agreed, there have been some great posts on your diary over the last few days. 

Glen.  Do you have to sleep in a set position and do you wake up tangled in hoses or waking yourself up having rolled on your machine?   Is it possible to disconnect stuff in your sleep?

I have a CPAP and definitely need it, but find myself tangled up if I turn on the "wrong" side, and sometimes pull my mask off without been fully conscious

Cheers

Had to look up apnoea, i thought I knew what it was but wanted to be sure. Must be quite debilitating to never sleep properly. I can't detach the power to the LVAD at any time, either batteries or, if sleeping I can plug into a power module with longer leads but rarely do these days.

I don't move much in my sleep and sleep on my side so don't find it too difficult at all actually. if i do want to move from left to right I think I do wake for a second and lug my handbag over from left to right at the same time.

[RED-DOG]

Also Glen, something as huge as VAD must bring with it an acute sense of your own mortality. How have you coped with that? Has it changed your outlook on life and if so is it for the better or worse overall?

Interesting question this - I was hospitalised for a month or so before the operation. Was in pretty bad condition and for the last 10 days or so I had an aortic balloon pump fitted to pump blood enough to get some better function from all the organs to get fit enough for an operation.

In hindsight, and also since then, I think I'm actually hard as nails and pretty resilient. Pre-op I had moments of melancholy, considering what I knew I would miss (too many to list) and things I would never see (kids getting married, grandchildren). But I don't ever remember being fearful, either of the operation or dying. On the slightly fatalistic side, dying on the operating table seemed like a pretty decent and fear free way to go versus the quality of life I had experienced in the 3 months up to the op.

The main change in outlook is that I am a little more pre-occupied with our family financial situation in the event that I die - something 8 years ago I never worried about too much as I'd always earned well and made money fairly readily. For example, I keep working today because there's a pretty decent death in service benefit. I assume many people would stop work and live it up a bit in the knowledge that their days are somewhat numbered. I've never had a bucket list and always felt pretty contented with my life and what I've done. If I'd really wanted to do something, I'd have probably done it before now so I can't magic up a set of experiences that I want just because of the current situation.

I know that a number of patients find the whole thing extremely depressing and there are a lot of support services available that I have never felt I need to avail myself of. I've never felt like that. At the time I was discharged I was the fastest release after the op in the UK at that time - something like 17 days, memory fades, but I was ludicrously pleased with myself at the time. Have had a few complications since with a few short periods of hospitalisation but nothing for 3-4 years now. Just clinics every 3 months and an annual right heart catheter check in theatre. Bizarrely, though short of being institutionalised I think, I quite enjoy the clinics and the theatre experience each year. I feel like the red carpet is rolled out and I get to see some of the nurses that helped me way back then. Feels like a short (one day) holiday each time I go.

Overall, the experience has made me a better person imo. Whilst I don't have a bucket list and I'm not busy chalking up amazing experiences, I think I do feel a heightened sense of enjoyment and pleasure from small things, everyday stuff and, especially, family related things.

And finally, while conscious of death, I don't really meditate on it. I'm very happy that I've had this extra time to make amends for some things (if you ever really can) and massively improve some situations compared with where they were 8 years ago.

Long but, like I said, we all like talking about ourselves given the chance :-)


 

Probably one of the best posts ever Glen. Thank you for sharing.

Agreed, there have been some great posts on your diary over the last few days. 

Glen.  Do you have to sleep in a set position and do you wake up tangled in hoses or waking yourself up having rolled on your machine?   Is it possible to disconnect stuff in your sleep?

I have a CPAP and definitely need it, but find myself tangled up if I turn on the "wrong" side, and sometimes pull my mask off without been fully conscious

Cheers

Had to look up apnoea, i thought I knew what it was but wanted to be sure. Must be quite debilitating to never sleep properly. I can't detach the power to the LVAD at any time, either batteries or, if sleeping I can plug into a power module with longer leads but rarely do these days.

I don't move much in my sleep and sleep on my side so don't find it too difficult at all actually. if i do want to move from left to right I think I do wake for a second and lug my handbag over from left to right at the same time.

I'm totally fascinated by the actual physical and mechanical side of this. Indeed, until I read your poignant and inspirational post about the mental aspects I thought the mechanics would be the most interesting part.

How long does your battery pack last?
Do you have a plug socket on your body or is there a lead hanging out?
If you lost power, would your heart cope for a while on it's own?
Do you have a pulse as we know it?
Do you have a reflection?
Do you get fed up of silly questions?

[Rod Paradise]

I dislocated it 6&1/2 days after having it fitted. Apparently they are vulnerable until you rebuild the muscles and tendons.

The pain was excruciating,


I bow to the stories from the older guys about pancreatitis and dodgy eyes though. At a mere 65 I guess I have those things to look forward to.

Oi!! I'm 50 today, that makes me feel old enough!! 

Pancreatitis was caused by an overindulgent lifestyle and a touch of genetic bad luck.

[RED-DOG]

How come Celtic hasn't posted on here? Surely there must be loads of things wrong with him.