Interview HF16

Age at interview: 49

Age at diagnosis: 46

Brief Outline: Heart attack 2000. Angioplasty and stent 2000. Heart failure diagnosed 2000. Waiting for heart transplant.

Background: Self-employed export manager; married with 2 children.

He describes his experience of angioplasty in the US.

Stenting or angioplasty is as they term it, basically a very very fine tube of wire mesh. And this very fine tube of wire mesh is sat over the end of a balloon, a very thin balloon, on the end of a long introductory tube. You are taken to a theatre, day theatre, a local anaesthetic is put into your groin and then they, via the artery in your thigh, the femoral artery, they insert this catheter with it's a little fine tube with mesh on the end, and feed it all the way through your body, into the arterial track they're after, one of the main the three round your heart, whichever one is blocked up. Once it's in place and they've got to the obstruction, they push this into the obstruction, and then they inflate the balloon. This in itself expands the mesh making it much wider they then deflate the balloon and withdraw it. The mesh remains in place and opens up the artery so its in force from the inside. And then obviously the blood is no longer restricted and passes through to the part of the heart it should be going through to. That's basically what stenting is.

The following day... after some rest, well later that day actually, the difference was phenomenal obviously because they had opened up the obstructive artery and I felt like I had been hit by a bus, but I was still in a fairly good condition. Well enough to phone my wife and break the news to her myself, sort of 'don't panic, I'm in hospital'-  in fact I'm in the coronary care unit in a hospital, but don't worry! [laughs]. 
 

He developed a swollen and sore right breast from spironolactone.

No, I'm pretty sure I can rattle them off. My daily drug list... I take aspirin 175mg, no sorry 150mg of aspirin a day, atenolol 50mg, spironolactone 25mg.

Oh there's a funny one spironolactone, it has a very obscure side effect to the point that I actually went to my doctor with what I thought was a totally independent ailment to my condition. I developed a very sore right breast, very sore, and I went to the doctor because I just couldn't believe how painful it was or why it was so painful and why it was swollen, but one of the side-effects of spironolactone is that it causes breast enlargement. Unfortunately it's not bilateral not uniform, just the one so that's quite embarrassing and it's incredibly painful. Having said that it did stop and then started on the left-hand side and that became very sore, so they cut my spironolactone from 50mg down to 25mg and touch wood it's seemed to have eased off, but that's certainly a side effect and quite a painful one to boot.

So aspirin, spironolactone, atenolol, nicorandil 60mg a day, isosorbide mononitrate... 120mg a day, frusemide 160mg a day...  there is another one and I'm struggling to think what it is... no its my cholesterol tablet which I take of an evening, the name slips my memory, like I say it's a terrible memory! I think that's most of them, I don't think I've forgotten the others, I possibly have, but I can always get my list out and tell you. 
 

Explains that possible recipients of donor hearts are kept apart.

Do you know other people who are waiting as well?

No.

There's no kindred spirit?

No, when you have the call, I mean and my last one which was quite recently... my co-ordinator said, 'You know the score, we will be calling in other people as well you know.' I was probably one of three or one of four, and that's good because as I got turned down I'm assuming that hopefully one of the other's hopefully got it. [Pause] but that's how it is and and when the transport comes they sort of say, 'Our time slot for arrival is X because so-and-so is arriving at Y, and so-and-so is arriving at W..', and so we don't all meet or see each other and we are totally in different places, families kept apart etc., you don't all really want to sit in the same room looking at each other saying okay 'eeney, meanie, mynie, mo...' That's how they do it and that's great.

Explains that his height and antibodies have to be matched before he can have a heart transplant.

I went back in January for angioplasty and another examination on my heart because of the problems I was having with the pain and they thought maybe one of the stents was obstructed and it was, then actually in January, January 2nd of 2001, January 4th or early January 2001 they actually broke the news to me that on further examination that's when they realised the heart was absolutely finished, and that I would have to retire from my work and everything else and incapable of carrying on. 

By July that year, the deterioration was sufficient that [wife],  I was then transferred, sorry, I was then put on to [Hospital] Transplant Unit and by July that year they felt that I should really go on the transplant list and I have been on that since then, July 2001.

Because of the apparent problems I have, one being my height which... I'm nearly 6'2' and it would appear that you have to have... a donor heart from a similar statured person, so if you know any tall people around give me a call, and also I have some uncommon antibodies in my blood which they're having real problems matching as well so that's why I'm still waiting. They do say normally it's six to eight months, six to nine months before a transplant comes up. I've had two shouts in, where are we, July, May nearly two years, neither of which actually matched up on the antibodies so that's why we are where we are today. 

Describes his mixed feelings about having a heart transplant.

Oh yes that would be nice, oh yeah I'd certainly go for it!  That in itself, we have flipped the coin over that one a few times. There are times when I feel great, and when you're feeling great and somebody rings up and says, 'Oh we're going to go to theatre now and you're going to have a transplant', you think there is an element of risk in this transplant. (You see, it's not like having your tonsils out! Someone's going to take your heart out and stick it on the sideboard, put somebody else's in and then try and whack it and get it going again.) The coin is certainly in the air, all the way through the procedure, and you're not really sure if it's going to be head or tails. I think its, the odds are fairly good now I mean, it's getting more practice procedure but it's still no no solid event and when you're feeling good you think well do I really want to take that risk, because it is a risk... Even if you get through the procedure you've got to survive after it. One of my cardiologists said to me, 'All you've got to do, is survive till your transplant, survive the transplant, survive after the transplant for a few months and you're in with a chance'. And I thought, 'Get in there!', so I mean you know, you have to weigh this up when they say, 'Oh there's possibly a heart', and you feel great and..do I really want to go and do this? Other days I feel that dreadful, that it would be a gift you know if I had a transplant so [shrugs].

He sees his cardiologist every 3 months and his GP once a month.

I actually see my GP once a month now and she's great and hats off to her, a fabulous GP, they take a lot of flak GPs do pretty uncalled for in most cases I think, I've got a good one, a really good one and she's actually mooted that if 'your cardiologist is busy I'll always take on your case load', and I put it to the cardiologist and she said, 'Yeah, great, thank you', you know, the poor devil was snowed under with work. So I see my GP now every month and my cardiologist once every three months now. So it's worked out OK in the end. It's worked out OK.

No, there's a monthly clinic with my GP which was formerly with my cardiologist which was bloods and weights and everything, but no immediately post MI, post discharge, then you have the offer of attending rehab environment. I went once and, each to their own you know, it wasn't for me. I think I was the youngest by 40 years, but it really wasn't for me, and everybody talked about their illnesses, it's the last thing you want to talk about! And if you'd had an MI they'd had two or three, yeah okay fine, so no, I opted out of that one! 
 

He misses the cardiologist he had built up a relationship with over the years.

Yes, we're talking of personal situations now. In my own personal situation there has been a change which sadly had to come about. My cardiologist from day one in the UK who I had a wonderful rapport with, the one who decided that I perhaps didn't need the bypass initially - but I've never never ever held that as a grudge it was a decision and that's it, sadly has moved to another hospital. She knew me and knew me well and she knew when I was bluffing [laughs], she saw straight through me, she was great, I've the greatest admiration and respect for her and [was] deeply saddened to lose her because I felt she knew me and she knew my situation, and that is a tremendous comfort. The cardiologist I have now was a colleague of my former cardiologist (they worked together), no problems at all - different person, different mannerisms, different everything else, but an equally fine cardiologist I'm sure, but cardiology is one of the things she does whereas my former cardiologist was a cardiologist, this is a general consultant who does cardiology, and as such has inherited the former cardiologist's workload.

So with the greatest respect in the world to my present cardiologist, she really doesn't have the time to spend and to even get to know me like my former one did. It's not a criticism it's just a statement of fact. So I dearly miss my former cardiologist and do not have the facility with my present one that I had with my former. If I picked up the phone and rang her secretary and said, 'It's so and so here, can I have a word with Dr such-and-such?'. They would say, 'Oh yeah hello - (first name terms)', the secretary would say, 'Oh yes, I'll let her know you rang'. The secretary wouldn't ring me back, my cardiologist would ring me back and say, 'Hey up, what's the problem?' or 'Those drugs are doing that to you? I'll tell you what, do this, do that', and we'd talk, that was fantastic, anywhere anytime. Don't really have that with the present cardiologist to the point that now, where I used to see my former cardiologist every month, I see my present cardiologist every three months, and that's by choice.

Because of his bad memory he puts his medication into pill boxes and takes them 3x a day.

My drug dosage is based on three applications a day; a morning, a lunchtime and an evening dosage. I have a little ritual on a Sunday where I sit down with my three weekly boxes, I have three boxes divided into the days of the week which anybody can buy from the pharmacist and I have found them most useful because one of the problems I've got with this condition (I don't know if it's the condition or just a problem I've got), but I have a terrible memory, incredibly bad memory so I have these three boxes which I purchased, and I sit every Sunday morning and put all the relevant tablets into the relevant boxes, so I take out these 9 or 11 in the morning, only three at lunchtime now because they've upped the dosage to a point where - what tends to happen sometimes is for example if I'm taking isosorbide mononitrate 60 milligrams, the tablets only come in 20 milligram dosage so you end up taking three at lunchtime, three in the morning, well now they actually do a 60 milligram one so I only take one. So that's my lunchtime ones, and in the evening I take another three for cholesterol and all sorts of  bits and pieces, and that's basically how I do it and my aide memoire is that I get up in the morning and... before I get washed and dressed, I will take my tablets. The lunchtime ones... is just routine, I don't always remember, I have to confess to that one, my lunchtime ones but I try to, and then the evening ones, well again before getting into bed, I take my evening ones. They're not too bad to remember, I do occasionally forget those as well, but not too often. I think in total there's about - because they've reduced the quantity by increasing the dosage of tablet - I'm down to about 18 a day now from about 24 or whatever it was. 

Says he has become more emotional since his heart failure.

I don't think so, I think the only thing which I should have mentioned which I haven't and I think it is down to the drugs, I tend to get emotional, that's the thing I forgot to mention... I tend to get emotional over the daftest things you know, don't watch Bambi for goodness sake, it's terrible!  I think it's because, this is going to sound really stupid because I have no spiritual feelings whatsoever we've established that, but it's like I've sort of woken up and smelt the coffee, and... everything around you has a lot of value, and the daftest things upset you - you see a pregnant women and it's wonderful, it really is, it brings me to tears, so blame the drugs I do, that's the answer to that one. So yeah probably overly emotional. 

Says that time has become very valuable and that he wants to spend time with his wife.

I'm aware that I'm certainly more aware that time's valuable and try to do more with my time, with my family. I mean bearing in mind that for the last umpteen years I've spent one week at home and one week away or three weeks away or whatever and now I'm sort of like my wife's shadow to the point you know, she sometimes says, 'Haven't you got something to do?', you know, so yeah, we enjoy our garden together and make time for each other, more than we've ever done I mean it's great, it's like we're courting again, it's lovely, it really is lovely [smiles].

Advises people to take someone with them to consultations so that nothing is missed.

I have my wife with me who is... a great, great support to me because when we are having sometimes the discussions, she's always with me, when I'm with my doctor, my GP, my cardiologist, talk with the team down at the transplant unit, she's always with me, at my request. I don't think she always wants to come with me but I always say please come in with me because, you know, two sets of ears are always better than one, and then to have somebody you can discuss it with, to say you know, 'When he said such and such, what do you think he meant?' is far better than saying, 'He said such and such, what do you think?' because they've actually heard it as well and they've heard and in the connotation etc., so I would always say you know when you are in a consultation always have a second party with you. Plus the fact, you tend sometimes to wander,  that's a pretty broad statement, I tend to sometimes... my mind wanders off the point a little, you know I'll still be thinking about something they've said to me, and they've gone onto something else and I've sort of missed a wee bit, so it is always better to have somebody with you.