Any survivors on here, cardiac arrest, heart attack, cancer....

[Alan O]

The angiogram came back clear so they didn't need to fit another stent which is really good, but it still leaves us with no explanation for the unusual ecg readings that gave them the concern in the first place. On an intellectual level I'm very much relieved as they have really taken it seriously and ran every possible test possible (perfusion test, chest xrays, bloods, angiogram...) and have found nothing of concern, but on an emotional level I'm still a bit unnerved.

I think what doesn't help is the experience we had when she had the initial heart attacks. She'd been getting all the symptoms (shortness of breath, chest pain, tingling in arm...) for a few days, it got worse after a dog walk and we called an ambulance when we got home. The paramedics were lovely, ran some tests and found she had an extremely low heart rate but ecg looked ok but on balance thought best to run her into the hospital. In the QE they ran some more quick tests and said that there was something unusual but that they were fairly sure she hadn't had a heart attack (harder to diagnose in women apparently), instead of doing an angiogram there and then they booked her in in a fortnights time.

3 days later while walking a dog she was looking after she starts to feel really unwell, as it was a dog she hadnt looked after before she forced herself to walk home instead of sitting down to rest as she would have done if it had just been our dogs that she could trust not to dart off. I'd had a job cancelled so by chance was at home, she flew through the door, dropped the dog in the back room and collapsed in front of me. The paramedic who came out was absolutely horrible to her, she'd obviously taken one look at the old hippy wagon on the drive (bedford tk horsebox/camper conversion) and at us and at my partners age and assumed she was having a panic attack/time wasting/being hysterical. Accused her of wasting their time, told her to stop being silly and get up and walk (she was to weak to even get up by herself let alone walk down the drive unaided) to the ambulance and then tried to convince us not to go into hospital. Thankfully I put my foot down and insisted they took us into the QE, as within 5min of being in there, they'd carted her away from me, her heart stopped 3x and had to be resuscitated & emergency stent fitted.

The whole experience was so traumatic, especially the wait for the ambulance when she was loosing consciousness, then the attitude of the paramedic + knowing that if they'd done the angiogram on her first visit to hospital they would have fitted a stent and she would not have had the heart attacks. Its brought back all those emotions and not having a conclusive answer has left me a bit on edge. But the important thing is that its put my partner's mind at rest at least (she has no memory of the event, so has different emotional baggage from it).

Its been surprisingly cathartic and helpful just to write all this down, as its not something I've really discussed in any detail with most people/

Being able to just talk about it can make a big difference - and when you talk to us here, you know you're talking to people who know how it feels!

 

[classic33]

@NickNick, have a word with the local ambulance service. Who-ever came out and said that needs something saying to them. They were lucky this time, next time??

Due to the way my fits/siezures/attacks start, I'm nearly always the last to find out. I've been accused of being drunk(ALL the muscles can relax), "before"(I'm on autopilot) more than once. And it's only when what most people will know as one happens they know there's something wrong.

 

[classic33]

Full body MRI scan and bone density test(s) now been set up for Saturday. Two weeks after I was told the scan would be done. Being done at a not so local private hospital.

CSF leaks may be linked to bone thinning, caused by long term drug mis-use. I got put on it in March 77, to try to help control the epilepsy. Getting classed as a drug abuser is the only way they could start treatment.

Over a £1000 for the MRI scan. I never asked about the bone density tests.

Started well, got a name for a place that doesn't exist, then sent an address for a different location.

 

[PaulSB]

@NickNick I completely understand your feelings on being intellectually satisfied but emotionally unnerved.

I haven’t had the poor treatment you received but I did experience an evening when I thought I was having a second attack. It must have been 9-10 months after my attack. I had chest discomfort for several hours which was getting worse though I had none of the sensations I’d experienced during and after my heart attack.

In one part of my mind I knew it was muscular, in another a heart attack and in a third a huge fear that despite all my efforts these were wasted as I was going down again. This third feeling was hugely distressing, even more than the thought of having a second heart attack. My thought process was I can be physically fixed but no matter what I do it will come back.

About midnight I got up and told my wife she had to take me to A&E. Obviously she did. I had all the usual tests, stayed overnight, saw a consultant and was sent home in the morning with an all clear. It was muscular.

I feel it is difficult for people who have not experienced a life threatening illness, attack etc. to understand how hopeless one can feel if one thinks there is a repeat or regression. For me the idea after months of discipline, exercise, diet etc. to feel I was back at square one was overwhelmingly hard.

Hopefully you can take some comfort from the knowledge others experience similar thoughts and emotions. It’s very natural.

 

[classic33]

@NickNick I completely understand your feelings on being intellectually satisfied but emotionally unnerved.

I haven’t had the poor treatment you received but I did experience an evening when I thought I was having a second attack. It must have been 9-10 months after my attack. I had chest discomfort for several hours which was getting worse though I had none of the sensations I’d experienced during and after my heart attack.

In one part of my mind I knew it was muscular, in another a heart attack and in a third a huge fear that despite all my efforts these were wasted as I was going down again. This third feeling was hugely distressing, even more than the thought of having a second heart attack. My thought process was I can be physically fixed but no matter what I do it will come back.

About midnight I got up and told my wife she had to take me to A&E. Obviously she did. I had all the usual tests, stayed overnight, saw a consultant and was sent home in the morning with an all clear. It was muscular.

I feel it is difficult for people who have not experienced a life threatening illness, attack etc. to understand how hopeless one can feel if one thinks there is a repeat or regression. For me the idea after months of discipline, exercise, diet etc. to feel I was back at square one was overwhelmingly hard.

Hopefully you can take some comfort from the knowledge others experience similar thoughts and emotions. It’s very natural.

It's "the known unknown's, and the unknowns that aren't yet known" as one nurse put it to me on another trip to A&E, that cause the biggest worry. Do you go with something you may be right about or wait?

I seldom get the chance to decide, but I've left nearly everytime, first time.

 

[ColinJ]

I feel it is difficult for people who have not experienced a life threatening illness, attack etc. to understand how hopeless one can feel if one thinks there is a repeat or regression. For me the idea after months of discipline, exercise, diet etc. to feel I was back at square one was overwhelmingly hard.

ABSOLUTELY!

It took me over a month to be able walk 50 metres without taking a long rest and several more months to build up to a range of 1 km. It took me 8 months to get off medication and back on my bike, but it only took 3 months after that to get ill again and end up on meds for life.

It completely did my head in. In fact, I would say that my mind was by then in in a worse state than my battered body! It's why I went completely OTT posting and talking about it. It is a form of PTSD. I'd say that it took me about another year before I was able to stop thinking about it for 10-12 hours a day.

It has taken me over 5 years to get to the point where I can go several days at a time without worrying about future relapses.

 

[Effyb4]

The angiogram came back clear so they didn't need to fit another stent which is really good, but it still leaves us with no explanation for the unusual ecg readings that gave them the concern in the first place. On an intellectual level I'm very much relieved as they have really taken it seriously and ran every possible test possible (perfusion test, chest xrays, bloods, angiogram...) and have found nothing of concern, but on an emotional level I'm still a bit unnerved.

I think what doesn't help is the experience we had when she had the initial heart attacks. She'd been getting all the symptoms (shortness of breath, chest pain, tingling in arm...) for a few days, it got worse after a dog walk and we called an ambulance when we got home. The paramedics were lovely, ran some tests and found she had an extremely low heart rate but ecg looked ok but on balance thought best to run her into the hospital. In the QE they ran some more quick tests and said that there was something unusual but that they were fairly sure she hadn't had a heart attack (harder to diagnose in women apparently), instead of doing an angiogram there and then they booked her in in a fortnights time.

3 days later while walking a dog she was looking after she starts to feel really unwell, as it was a dog she hadnt looked after before she forced herself to walk home instead of sitting down to rest as she would have done if it had just been our dogs that she could trust not to dart off. I'd had a job cancelled so by chance was at home, she flew through the door, dropped the dog in the back room and collapsed in front of me. The paramedic who came out was absolutely horrible to her, she'd obviously taken one look at the old hippy wagon on the drive (bedford tk horsebox/camper conversion) and at us and at my partners age and assumed she was having a panic attack/time wasting/being hysterical. Accused her of wasting their time, told her to stop being silly and get up and walk (she was to weak to even get up by herself let alone walk down the drive unaided) to the ambulance and then tried to convince us not to go into hospital. Thankfully I put my foot down and insisted they took us into the QE, as within 5min of being in there, they'd carted her away from me, her heart stopped 3x and had to be resuscitated & emergency stent fitted.

The whole experience was so traumatic, especially the wait for the ambulance when she was loosing consciousness, then the attitude of the paramedic + knowing that if they'd done the angiogram on her first visit to hospital they would have fitted a stent and she would not have had the heart attacks. Its brought back all those emotions and not having a conclusive answer has left me a bit on edge. But the important thing is that its put my partner's mind at rest at least (she has no memory of the event, so has different emotional baggage from it).

Its been surprisingly cathartic and helpful just to write all this down, as its not something I've really discussed in any detail with most people/

That sounds a horrific experience. I completely understand your worry. My heart attack came completely out of the blue and there was no apparent cause for it.The artery tore, rather than being blocked. I was a a 40 year old woman, with a relatively healthy life style. I was very lucky that they recognised it as a heart attack and took me straight into hospital.

Four years later, I still worry whenever I get chest discomfort or experience shortness of breath. When I go to the doctors with these symptoms, they say "Well you do have heart damage. Your heart doesn't work as well as it should." They don't seem to understand that I'm always worried that it's another heart attack.

 

[classic33]

The hard part can be getting a doctor who can trust you. More than getting one you can trust.

You'll not say it's important you see them everytime, whatever it is. They knowing that you're not likely to do, will mean that when you do, it is important. For 20+ years I had one, who I could trust to believe & understand me when I saw him. These last four years have been very different, since he moved on.

A slight problem at the railway station yesterday, meant I missed the train, in more ways than one. But I'm not willing to let it rule my life to the point of not doing anything. Something I've grown up with, but can cause problems at times.

I once went with a bit of a headache, not settled down after a week after a fit. Found myself being admitted with 13 clear cracks in the skull when X-rayed.

 

[ColinJ]

That sounds a horrific experience. I completely understand your worry. My heart attack came completely out of the blue and there was no apparent cause for it.The artery tore, rather than being blocked. I was a a 40 year old woman, with a relatively healthy life style. I was very lucky that they recognised it as a heart attack and took me straight into hospital.

Four years later, I still worry whenever I get chest discomfort or experience shortness of breath. When I go to the doctors with these symptoms, they say "Well you do have heart damage. Your heart doesn't work as well as it should." They don't seem to understand that I'm always worried that it's another heart attack.

It is amazing that you survived your ordeal, and equally amazing that you are now able to do what you do!

I'm glad that the tandem has turned out to be such a successful purchase, allowing you to do even more by sharing the efforts with your husband.

 

[Effyb4]

It is amazing that you survived your ordeal, and equally amazing that you are now able to do what you do!

I'm glad that the tandem has turned out to be such a successful purchase, allowing you to do even more by sharing the efforts with your husband.

Thanks Colin. The tandem is fantastic. We're planning a 50km ride this evening on it. It allows us to enjoy cycling together, without worrying about the ride being too hilly or too long for me. During the summer, we managed 65 miles on the tandem over the south downs, which would have impossible for me before.

 

[NickNick]

@NickNick, have a word with the local ambulance service. Who-ever came out and said that needs something saying to them. They were lucky this time, next time??

Due to the way my fits/siezures/attacks start, I'm nearly always the last to find out. I've been accused of being drunk(ALL the muscles can relax), "before"(I'm on autopilot) more than once. And it's only when what most people will know as one happens they know there's something wrong.

You're right, we should do really, its just that at the time you're caught up in everything going on an then further down the line life takes over and you forget about it. Its a difficult situation as I understand how they can end up like that, they are worked ridiculous hours, have very little support and its very easy to burnout in such situations and loose the ability to treat each new patient without the baggage of past experiences, but equally it lives are at stake and if you're that burnout and jaded its prob time for a change in career.

A close friend has had similar problems due to his diabetes back when he wasn't as good at keeping on top of it and would get accused of being drunk/have police called out/get arrested when all he needed was some sugar. Its a difficult world to navigate!!!

 

[NickNick]

@NickNick I completely understand your feelings on being intellectually satisfied but emotionally unnerved.

I haven’t had the poor treatment you received but I did experience an evening when I thought I was having a second attack. It must have been 9-10 months after my attack. I had chest discomfort for several hours which was getting worse though I had none of the sensations I’d experienced during and after my heart attack.

In one part of my mind I knew it was muscular, in another a heart attack and in a third a huge fear that despite all my efforts these were wasted as I was going down again. This third feeling was hugely distressing, even more than the thought of having a second heart attack. My thought process was I can be physically fixed but no matter what I do it will come back.

About midnight I got up and told my wife she had to take me to A&E. Obviously she did. I had all the usual tests, stayed overnight, saw a consultant and was sent home in the morning with an all clear. It was muscular.

I feel it is difficult for people who have not experienced a life threatening illness, attack etc. to understand how hopeless one can feel if one thinks there is a repeat or regression. For me the idea after months of discipline, exercise, diet etc. to feel I was back at square one was overwhelmingly hard.

Hopefully you can take some comfort from the knowledge others experience similar thoughts and emotions. It’s very natural.

Thanks for you post, very thoughtful and very helpful/of comfort. I know with my partner one of things she struggled with was she's woken up in ICU to find out she's had this major event (her dad died at v young age on the Longbridge production line of a heart attack of similar magnitude), spends a few days in CCU, gets sent home with load of meds and short course of physio at the hospital and bar a one year check up, that was it. Now it makes sense as stents are such a common and reliable procedure that is all the follow up support that is required, but there should be some kind of psychological support (and for affected relatives/partners...) to help wrap your head around whats happened. But sadly our mental health systems are so stretched I can't see thishappening any time soon.

 

[classic33]

You're right, we should do really, its just that at the time you're caught up in everything going on an then further down the line life takes over and you forget about it. Its a difficult situation as I understand how they can end up like that, they are worked ridiculous hours, have very little support and its very easy to burnout in such situations and loose the ability to treat each new patient without the baggage of past experiences, but equally it lives are at stake and if you're that burnout and jaded its prob time for a change in career.

A close friend has had similar problems due to his diabetes back when he wasn't as good at keeping on top of it and would get accused of being drunk/have police called out/get arrested when all he needed was some sugar. Its a difficult world to navigate!!!

I'm not saying have a go at them. But a quiet word from the shift supervisor might prevent anything more serious.

Them and A&E staff are two lots of people that I've had to use and rely on over the years. Too often in many ways.

 

[SatNavSaysStraightOn]

Thanks for you post, very thoughtful and very helpful/of comfort. I know with my partner one of things she struggled with was she's woken up in ICU to find out she's had this major event (her dad died at v young age on the Longbridge production line of a heart attack of similar magnitude), spends a few days in CCU, gets sent home with load of meds and short course of physio at the hospital and bar a one year check up, that was it. Now it makes sense as stents are such a common and reliable procedure that is all the follow up support that is required, but there should be some kind of psychological support (and for affected relatives/partners...) to help wrap your head around whats happened. But sadly our mental health systems are so stretched I can't see thishappening any time soon.

I guess I've been fortunate with my first adult stay in icu. It had happened in Australia, not the UK.

For me it was a case of going to the doctors with what I thought was my asthma out of control due to a chest infection. Last thing I remember were the surgery doors as I was being taken out to an ambulance. I came round the sometime later on a respirator in ICU after being airlifted from one hospital to another. 6 days on the respirator, 12 days in ICU, 3 weeks on a general ward with daily physio (about an hour) followed by 3 weeks of acute inpatient rehab. Physio 9-12 and 1:30-3 5 days a week. I had to learn to walk again, initially I was too weak even to move. It took me 2 days to be strong enough to write a few words with a nurse holding the clipboard.
But I now have 12 months support from it inpatient rehab team including physiological help to deal with the issues. and I need it.
I'm still useless at home. I managed to boil some eggs lay Friday, but the pan had to be on the stove with the water in it for me. The first week home I managed to break the kettle, no kidding. It was one of those clear plastic/glass ones that you can see the water in. It was empty so I tried putting a little water in it. It was too heavy and I ended up dropping it against the pan that was in the sink. It broke!
Getting me had around the fact that I still can't manage any of what I did previously even a month after my discharge is getting too me. My 2nd physch appointment is next week. Luckily is a morning appointment because I'm usually asleep in the afternoon, exhausted from sitting all morning knitting or spinning, drawing or just watching my world go by.

Right, it's nearly 8am, so in going to see if it's warm enough to sit outside yet. I hate being inside after not leaving the hospital for nearly 2 months.

Edit: here's what happened... https://www.cyclechat.net/threads/severely-ill-yet-again.223981/

 

[Deleted member 1258]

My best wishes for a speedy recovery