Interview HF34

Age at interview: 35

Age at diagnosis: 35

Brief Outline: Heart attack 1992, Triple bypass 1993. Angina 1999. Heart failure diagnosed 2003.

Background: Company Director; married with 1 child.

He felt shocked by his diagnosis at first but was reassured by his consultant.

Yeah I kept on looking forward, looking ahead and I had a very optimistic view to life. Never looked back at the trauma I had in 1992 and before 1992. And even in 1999, when they said, 'You have heart failure,' I said, "Fine, I'll manage, I'll survive and I'll...'. You know I was a survivor, a really a great survivor in 1992, because I remember one of my consultants saying, reviewing my notes in 1995 saying, "I can't believe you're still around," [laughs] I said, "Thanks doctor [laughs] that's very cheerful!"  And you know, you know I've tried to live as normal as I could be. 

As I said to you in 1999 after I came back from my holiday in the South of France went straight the next day to the rapid access chest pain clinic at the hospital. Soon after that, that day, I stayed the whole day in the hospital, and they said, "Now you're, you've heart failure and you've got monitor your lifestyle and you have to watch for A, B and C and D. Food, drinks you know everything you have to watch it carefully and you have to monitor that." Then I mean they said to me, "You've got heart failure.' That was in 1999, and the actual, the actual term 'heart failure' its a bit, a bit of a..you know it came to me as a bit of a shock, oh 'heart failure' this is, my first question was to the consultant, "How long have I got to go?" [laughs] he said, "No don't worry it's not, you know it's called heart failure because the heart doesn't have the full capability to pump as much blood as it should and you know nothing should, you know you shouldn't worry about, I mean obviously you have to keep it in mind that you've got that, but you know you shouldn't like think about death every day." And I laughed and said, "Fine okay I'll manage that." 

He believes his heart attack was caused by emotional stress rather than high cholesterol.

Back in 1992 I had a heart attack and it was a result of a tremendous stress accumulated over two years of time, literally tremendous stress. I was very fit, never been a smoker in my lifetime, I was always mild to moderate drinker and very much into sports and activities, all sorts of activities. Just something happened in my life between 1990 and 1992 and it was just too much to cope with and that stress caused a spasm in the heart muscle and it blocked the coronaries for a while and then I had a heart attack, a major heart attack. Of course I was hospitalized straight away for quite a, quite long period. After that they took me through to do an angiogram and they found out three of the coronary arteries were blocked completely. The myocardium was infarcted and part of the LV, there was an aneurysm in it. So they said "You have to rest for a few months," and in 1993 I had the by-pass operation.  

They by-passed three of the coronary grafts, repaired the LV aneurysm but I'm, you know I'm left with the myocardial infarction and now it's about twenty percent of the muscle in the LV, in the left ventricle is dead. I mean it's infarcted, that doesn't function and that's what's caused the heart failure. That's the history of the disease and that's when I first knew about it. It definitely, I mean what I want to stress is the cause of my heart failure wasn't high blood cholesterol, it wasn't fat, I was a fit man, very active, just stress. So that's, that's a very important factor.

I can brief a little bit but like all sorts of things happened to my life in 19, between 1990 and 1992. I lost my father and brother in two weeks time, suddenly we lost all our money, all my father's savings in a bank that collapsed in 1991. My life changed dramatically from a spoilt teenager  to you know someone who had to face all these, the reality of life which I didn't see before. It was, it was beyond description really it was tremendous. There's more of it, I mean there's more detail but just really it will just take you three hours to tell you about it.
 

Atenolol seemed to affect his sexual ability but his libido returned to normal after stopping the drug.

Actually the, the... atenolol affected my sexual ability tremendously for about, I stayed on it for about 7, 8 years. It was fine in the first 5 or 6 years till after 1999 I started feeling a difference in my ability, but once I stopped it everything was, came back to normal. Actually I'm quite fine now! My wife doesn't complain! [laughs].

Which is good. But I felt, I felt the difference and actually I took some sort of treatments for it for the sexual ability after I stopped the atenolol. So there were loads of medications involved in my case to help the bad impact of the other drugs that were dedicated for the heart to treat the liver and the, digestive system and the, as I said you know, to treat the sexual ability, yes. 
 

He was unable to tolerate simvastatin (Zocor).

And then they put, they increased my medications, they had a few more medications, they increased my medications one of them was the Zocor [simvastatin] for the, for the lipids, for the cholesterol. After six months of taking the Zocor it knocked me out completely! One of the side effects of the Zocor is liver problem, and I had a liver [pause]  it's kind of a hepatitis, they called it 'drug-induced hepatitis', and at some stage I just couldn't get of bed in the mornings because of that.

And no one told me that I had to check my liver while I was taking the Zocor. So stopped the Zocor [laughs] and then found out the atenolol was causing some other problems with the, with my... digestive system, and went on other medications and was seen by another consultant to do with the digestive system.

I had colonoscopy and endoscopies and CT scans and MRIs of the digestive system, just to get it working. And the liver, I had liver biopsies and had medications to treat the liver, so you know everything was confused. I suffered for about two years after that. Now everything is fine, everything is stable, I'm on a few medications for the heart purely.  
 

He describes the pain he felt after his first operation and how he needed to have the bones in his chest re-aligned.

In 1993 when I had the operation you know they opened the chest okay, when they put it back they didn't put it back straight, the ribs weren't like this, they were not in line they were like this. And my chest was corrugated it was like this, you know exactly like this if you feel it and I was, I was in agony, tremendous pain for years but I went to the doctor and I said "Doctor there's a great pain in here." And I saw other patients with you know who had similar operations and they recovered, twenty days after the operation they're fine, six months later everything is forgotten and it's gone. They said "This can take up to a year."  And then I went next year and he said "It can take up to two years." It was so bad to the extent that I couldn't touch it, I couldn't touch the scar. And even at night if the duvet touches it it's a problem so I used to sleep like this or if I'm on my tummy I sleep like this so it doesn't hurt my scar [laughs]. Until 1990, but I lived normally, completely normally I mean I take the pain smiling [laughs]. 1997 they said "Okay let's do an xray."  They did an x-ray... the actual thing, the bones were like this and the said "Okay we have to re-cut them, align them." In 1998 I had a second operation and that was when you know this came to my mind. The nurse before the operation said "What do you think about this, this, this?" and one of the questions was "What do you think about dying?" and I laughed and said "You don't know what I went through so dying is yeah I'm fine, don't worry I'll sign the form." So I signed the form, went to the operation and they aligned the, re-aligned the bones together. They were, actually some, the wires, the metal wires were hitting some sort of, some nerves stuck in the middle and literally it was just like an electric shock, every time you touched the scar it was just like an electric shock goes through your body "Argh".  But it's fine [laughs] it's gone.
 

He thinks his GP's knowledge of heart disease is very general.

Well the role of the GP is very limited to be honest. They're very general, I mean their knowledge is very general. She knows that I, I think by now to be honest I know probably more information about the heart diseases than her because after I've, you know after what I've read, about you know about heart disease I think I'm more knowledgeable than her!

She was very general. She wouldn't say anything other than like, "Eat moderately, don't, avoid junk food and fatty food," which I know you know, she wouldn't add anything to my case, I mean she wouldn't add any benefits.

Actually I don't see her, I mean I don't, I'd go to see her if I had bad flu or you know something else other than the heart disease, because I know if I have a problem I know what to do myself now. 

Talks about how seeing different doctors at hospital appointments is unhelpful.

I think so especially when you went to the specialists in the hospital they should know the actual history of each patient. I mean every time I go to hospital I see a different doctor. I was never seen by a similar doctor twice. Every time I go there's a new doctor and all that he can catch up with is the last page on the notes saying, 'I reviewed this patient's case two months ago, three months ago and he had this and this and this' and he builds on that. He doesn't have the history of this patient or his particular case.

That's definitely something that's quite important to be with one doctor, or at least one  team, that they share together and they you know sit down together and share the cases together. At least you know they, when you go for a follow-up, they know who you are and you know what did you have, and all that. And in 1995 someone was totally new [laughs] was reviewing my notes and just read the previous pages and said, "I can't believe you're still around," [laughs] and you know.

 

Describes his last scuba dive when he almost died.

I started doing scuba diving in the early '80s and I loved it, I loved the sport and I kept on doing it. I took my full license in 1985, and you know it was a very passionate sport to me. And it's very sociable as well because you go out in groups, meet new people every time you go out in a boat, and it's just beautiful.

I stopped doing it since I had the heart attack till 1995. 1995 I tried it again and I managed successfully and that was a great achievement, it was you know something else, just like I had my life back again!

And went again three times to different diving spots met new people, had a great time, you know it's just a great thing. And you go down, and everyone comes out and speaks about the experience and what did you see and you know what did you find and where did you go, blah, blah.

Last time we, last time I did it was in my, last year in our honeymoon, when we went to our honeymoon. We went to an Island called Phuket in Thailand and despite my wife's concern, I said, "No I'm fine and I'm fit enough to do it and let's do it."  She refused to do it and I went out with a bunch of people. She was with us on the boat, we dived twice for about two hours and it was fantastic. This year my wife was 5 months' pregnant, two months ago, I said, "Listen we will be grounded after the birth of our baby, actually in two months time we will be grounded, so let's do it!" We went to the Red Sea, a very nice resort in Egypt called Sharamsheik in the Red Sea, and I went on my scuba diving experience. Went down with an Italian diver you have to go down in couples at least. So we went down and at around 18 metres depth, which was normal to me before, I felt very uncomfortable - very, very uncomfortable - and I started ascending, started going up slowly.  

[laughs] I don't know what happened, at the 12 metres level on the way up, at 12  metres level, from the 18 to the 12 metre level suddenly I ran out of air completely although my tank was full but I just couldn't breathe any more, just literally couldn't breathe!

So pushed myself up and tried to just catching my breath and I thought there's something with my regulator. I grabbed my spare one and I tried to catch a breath from it and I just couldn't. I tapped on the other diver, the Italian diver, and I, as she turned I just grabbed her spare regulator and I tried it and there was literally nothing, just nothing!

And the options I had, was either die here, or you've got 10% chance to make it to the surface, because you know with sudden ascent the lungs can expand, and blow. The ears can expand and blow, and the chance is 10% to make it to the surface, this is my chance, I don't want to die here, let me try and make it to the surface.  

And without, I mean without a second thought, I just did a sudden ascent - I think I fainted in the last metre or two before getting to the surface. Made it to the surface, coughed a lot and then managed to catch a breath, slowly, very slowly.

She made, the Italian diver made it to the surface, 6 or 7 minutes later because she had to stand at 5 metre level every, every 5 metres so she had to stand at the 5 metre for three minutes and then two more minutes on the two or three metres level before coming up to the surface. 

So she came out, she tried to shout out at the boat and they couldn't hear, they were about 100 meters away. She inflated my jacket which I didn't even think about it, I was just you know trying to catch my breath.  

So I stayed

Describes how he managed without medication after his luggage was misdirected on holiday.

Of course when you travel it's a bit of a nuisance because you have to take all sorts of medications with you. When we went for two weeks holiday out to Egypt I had a whole bag like this full of medications. And I remember two years ago we travelled, me and my wife, we weren't married then, we went to Canada and the bag went to Austria [laughs]. We arrived in Toronto and my medication, my little bag of medication were in my suitcase and it was this big. And I called my insurance company here in the UK and said "Listen I need my medications, get me in touch with my doctor, I don't have any, any contact details to anyone because they're all in the, in the suitcase." And they said "We can't do anything just try and see a local doctor." I went to see a local doctor and he said "I can't give you anything, I just can't, just can't prescribe you with anything." I said "Listen I've got a heart disease," you know I showed him my scar, you know the scar, the operation scar, "And I have to take these medications," and it was, it took them think five days to get me the suitcase, the suitcase. It went to Austria instead of Toronto, I don't know why, for some reason. And those five days I didn't do anything because you know I didn't have the medication and I didn't do any, any activities, any physical activities, not even walking you know because I was a bit concerned that anything can happen without having medications around you. All that I could buy from the local chemist  was aspirins because you don't need prescriptions to buy them [laughs].

Finds his heart failure nurse extremely helpful and reassuring.

I've been allocated a heart failure nurse about 6 or 7 months ago and that was a tremendous help to my case. It's very good to have her number here on my phone. And I told her, I said, "I'm really happy to have your number stored in my phone and I know that there's someone that I can call any time." Although I didn't call her but... you know knowing that there is someone there that you can call any time of the day in case of, you know in case of need. That's very important, very important. And also she monitored the new medication I was prescribed, because of the previous experiences with the Atenolol and the Zocor. So on the new beta blocker she put me on a very low dose, 2mgs a day, and then she now increased it to 50mgs a day gradually. And you know every time I go and see her, almost once a month, she reviews my case, my daily activities and if that has been effective before she starts to increase the dose. Whereas before I used to go to see the doctor and say, "Oh now you're on 50mgs  no that's not enough - you should take 100," and you know he started on the 100 and then the 100 damaged another part of the body. So it was fantastic, I mean she was, she's great and it is a fantastic help. 

Rarely seeing the same doctor twice has led to inappropriate changes of medication being suggested by doctors who don’t know the history of his heart failure.

It was very, very disturbing when, you know, every time you see a new doctor who has no idea what did you have before, what sort of side-effects you had because of these medications. Because if, you know, instantly they say, ‘Oh you're not on Zocor and you should take Zocor,’ I say, ‘Doctor I can't take Zocor because I had a liver problem because of the Zocor,’ ‘Oh, then we should try this.’ And this is not tried, and I've tried 7 new medications and they affected my health tremendously, actually badly. If I was seen by one doctor from 1993, or at least three doctors from 1993 until now, I'm sure I would've, you know, none of this would've happened.