lynnconnolly
Well-known member
As some of you will know, I've had terrible difficulties with the health service - as have many of us I know, but I'm sooooo sick of fighting them just to get them to listen and do something constructive.
In a previous post, I asked advice about these odd episodes I get which involve first feeling very sick and dizzy, colour draining away followed by my heart bouncing around totally out of rhythm and all over shaking. Well, lots of you kindly replied and suggested I may be having small heart attacks or that my symptoms could be indicative of endocarditis.
I told my cardiologist about them and he said he couldn't think what my 'funny symptoms' may be but he gave me a portable ecg gadget and anyway, this morning, I had a similar, but not the same, episode. This one hardly affect my ticker at all except my heart was racing and felt 'weak' but I had the weirdest shaking/tremors. For some reason, my head nodded or shook totally independently and uncontrollably, followed by the rest of my body shaking and a weird sensation of something fluttering in my abdomen and groin. This came and went for about 30 minutes.
I went very white apparently, was cold to touch but was sweating and had the rapid heartbeat and dizziness. I thought 'this is it, I'm about to have a stroke' because I also felt kinda woolly headed.
So, my husband called an ambulance. The man who turned up couldn't pronounce aorta or mitral and called it 'atrial and mitrial regergitation' and pronounced it re-gerg-atation not the phonetic regurjitation. He couldn't spell it either so I had to tell him it was spelled regurgitation. When I told him I had pulmonary hypertension, he said 'oh no, your blood pressure's fine'
He then did an ecg which he said was fine but frankly, I wouldn't trust him to interpret my shopping list.
He asked why I had heart failure and what the cardiologist was going to do about the valves. I explained everything and he said, 'they used to use pig valves didn't they, dunno what they do nowadays'
At which point, I could've punched his lights out if I'd had the energy. He then rang my gp and told him I'd woken up feeling sick and got shaky, felt tired etc and had a temp of 37.9. Not unreasonably, my gp said I probably had a virus and should take 2 paracetamol and rest... by now, I didn't actually care if I lived or died and couldn't be bothered making him tell the gp the true story which is that it came out of nowhere - as always - and that I'm always tired because of the heart failure.
I'm so tired of fighting - it was the nhs who caused my heart disease with a drug I should never have been given, then they spent months telling me there was nothing wrong with me before eventually diagnosing me with a chest infection made worse by a panic attack - which they said was why I was sob and why my heart was racing - and sending me home with what turned out to be a heart enlarged to more than double its normal size and two severely regurgitating valves as well as - at the time - severe PH. Not only that, I had so much fluid around my heart and lungs I couldn't breathe enough to get off the floor.
I'm absolutely at the end of my tether and honestly believe they are going to kill me from negligence and/or ignorance. If I went into the a&e under my own steam, they'd just leave me sitting there for four hours and send me home with paracetamol and clearly, calling an ambulance via 999 has no better a result.
In fact, several years ago, I went to a&e because I couldn't move my arm and it was swollen and very painful round my shoulder. They said it was probably frozen shoulder and sent me home with codeine. Turned out it was dislocated. Years before that, I had what turned out to be a ruptured ectopic pregnancy and was 2 hours from death according to the surgeon but I was diagnosed initially as having gastro enteritis and told to stay in bed and have fluids.
I'm pretty certain I've either got endocarditis or endocarditis and clots. Oh yeah, nearly forgot, when they diagnosed my heart failure, I had lungs full of clots and I told them then that about 6 weeks before, my right leg was so painful I couldn't move it and my hip was red hot and so painful I couldn't touch it. My gp at the time said I had sciatica. I now know it was a clot on its way to join the chronic clots I already had.
I don't know what more to do. Nobody within the nhs gives a shi*, they don't listen, they don't care and I truly believe I'm going to have to die before they take me seriously, at which point, the pm will show what they didn't see and they'll tell my kids what a shame it was that it wasn't spotted earlier. The fact I've been telling anyone who'll listen for months that there's something really wrong with me won't count for anything.
Sorry that was so long and so self-pitying but I just needed to rant. Thanks all for reading - you guys are the only people who understand
Lynn
In a previous post, I asked advice about these odd episodes I get which involve first feeling very sick and dizzy, colour draining away followed by my heart bouncing around totally out of rhythm and all over shaking. Well, lots of you kindly replied and suggested I may be having small heart attacks or that my symptoms could be indicative of endocarditis.
I told my cardiologist about them and he said he couldn't think what my 'funny symptoms' may be but he gave me a portable ecg gadget and anyway, this morning, I had a similar, but not the same, episode. This one hardly affect my ticker at all except my heart was racing and felt 'weak' but I had the weirdest shaking/tremors. For some reason, my head nodded or shook totally independently and uncontrollably, followed by the rest of my body shaking and a weird sensation of something fluttering in my abdomen and groin. This came and went for about 30 minutes.
I went very white apparently, was cold to touch but was sweating and had the rapid heartbeat and dizziness. I thought 'this is it, I'm about to have a stroke' because I also felt kinda woolly headed.
So, my husband called an ambulance. The man who turned up couldn't pronounce aorta or mitral and called it 'atrial and mitrial regergitation' and pronounced it re-gerg-atation not the phonetic regurjitation. He couldn't spell it either so I had to tell him it was spelled regurgitation. When I told him I had pulmonary hypertension, he said 'oh no, your blood pressure's fine'
He then did an ecg which he said was fine but frankly, I wouldn't trust him to interpret my shopping list.
He asked why I had heart failure and what the cardiologist was going to do about the valves. I explained everything and he said, 'they used to use pig valves didn't they, dunno what they do nowadays'
At which point, I could've punched his lights out if I'd had the energy. He then rang my gp and told him I'd woken up feeling sick and got shaky, felt tired etc and had a temp of 37.9. Not unreasonably, my gp said I probably had a virus and should take 2 paracetamol and rest... by now, I didn't actually care if I lived or died and couldn't be bothered making him tell the gp the true story which is that it came out of nowhere - as always - and that I'm always tired because of the heart failure.
I'm so tired of fighting - it was the nhs who caused my heart disease with a drug I should never have been given, then they spent months telling me there was nothing wrong with me before eventually diagnosing me with a chest infection made worse by a panic attack - which they said was why I was sob and why my heart was racing - and sending me home with what turned out to be a heart enlarged to more than double its normal size and two severely regurgitating valves as well as - at the time - severe PH. Not only that, I had so much fluid around my heart and lungs I couldn't breathe enough to get off the floor.
I'm absolutely at the end of my tether and honestly believe they are going to kill me from negligence and/or ignorance. If I went into the a&e under my own steam, they'd just leave me sitting there for four hours and send me home with paracetamol and clearly, calling an ambulance via 999 has no better a result.
In fact, several years ago, I went to a&e because I couldn't move my arm and it was swollen and very painful round my shoulder. They said it was probably frozen shoulder and sent me home with codeine. Turned out it was dislocated. Years before that, I had what turned out to be a ruptured ectopic pregnancy and was 2 hours from death according to the surgeon but I was diagnosed initially as having gastro enteritis and told to stay in bed and have fluids.
I'm pretty certain I've either got endocarditis or endocarditis and clots. Oh yeah, nearly forgot, when they diagnosed my heart failure, I had lungs full of clots and I told them then that about 6 weeks before, my right leg was so painful I couldn't move it and my hip was red hot and so painful I couldn't touch it. My gp at the time said I had sciatica. I now know it was a clot on its way to join the chronic clots I already had.
I don't know what more to do. Nobody within the nhs gives a shi*, they don't listen, they don't care and I truly believe I'm going to have to die before they take me seriously, at which point, the pm will show what they didn't see and they'll tell my kids what a shame it was that it wasn't spotted earlier. The fact I've been telling anyone who'll listen for months that there's something really wrong with me won't count for anything.
Sorry that was so long and so self-pitying but I just needed to rant. Thanks all for reading - you guys are the only people who understand
Lynn