Mahendra

Age at interview: 59

Age at diagnosis: 40

Brief Outline:

Mahendra was first diagnosed with endocarditis and in 1994 had major heart surgery to replace the Mitral and Aortic valves. His symptoms of palpitations, breathlessness and dizziness were managed with medication and regular check-ups but they gradually began to worsen. In 2007, Mahendra had an Implantable Cardioverter Defibrillator (ICD) fitted to help with his symptoms.

Background:

Divorced, lives on his own and has a network of family and friends in the area where he lives. He went back to work full-time as a security officer after he had his ICD fitted. Ethnic background Asian.

More about me...

Divorced, lives on his own and has a network of family and friends in the area where he lives. He went back to work full-time as a security officer after he had his ICD fitted. 
As a vegetarian, Mahendra doesn’t feel he needs to change his diet which is rich on pulses, vegetables and fruits.

In 1994, Mahendra had major heart surgery to replaced Mitral and Aortic valves. His symptoms of palpitations, breathlessness and dizziness were managed with medication and regular check-ups but they gradually began to worsen. In 2007, Mahendra was advised to have an Implantable Cardioverter Defibrillator (ICD) fitted to help with his symptoms. 

Mahendra is on anticoagulants treatment so, before the ICD was fitted, doctors had to monitor Mahendra’s blood coagulation levels. He was admitted into hospital a week before he was due to have the ICD fitted and his warfarin medication was changed to heparin. Equally, after the ICD was inserted, he spent a few days in hospital to start him back on warfarin and to monitor his blood coagulation. Once he was back to the required level, he was discharged from hospital and able to return home. 

Mahendra had no concerns regarding having an ICD fitted but he had his driving license withdrawn due to ill health. His ICD nurse wrote to the DVLA indicating he needed his license for work and getting himself around and vouching for his character. He got his license back.

Every three months Mahendra has to go to hospital to have his ICD monitored and once a year he goes to see his cardiologist for a check-up. Mahendra feels well supported by hospital staff and confident of the medical expertise of the cardiologists that have looked after him for almost twenty years. He is due to have the ICD’s battery replaced shortly and was told it would be done under general anesthetics. He is not worried about it because for him it’s just a small procedure.

Mahendra’s quality of life has much improved since having the ICD fitted but says that progress has been slow and that even at present, there are some days he is able to do more than others. That it depends on his general health. But since having his ICD therapy Mahindra says that he has experienced significant health benefits - his palpitations and breathlessness have gone and overall, feels more energetic. 

His current medication consists of Brisopolol, Furosemide, Ramipril, simvastatin and warfarin. 

Mahendra explains that divorced, hard work and rheumatic fever have all contributed to his ill health.

That’s when I was divorced here. I had a lot of things piled on top of me and that did, you know, that did put me down completely. I was in. When I went they told me I’ve got to have heart surgery that did it, you know, affect me a lot while I was in hospital.

So you think one of the things that had to do with your heart condition was your personal problems?

Personal life, problems yeah.

Apart from your personal domestic problems at the time do you have any idea of anything else that could have caused your heart problems?

No not particularly, no because I used to sometimes before the heart surgery I was working very hard. I was working 7 days a week and my body got very tired because I had a family at that time and I had to work for my family and that did, you know, slow me down because I was working literally 7 days a week to, you know, to make the ends meet you know because everything to be, you know, because the wife wasn’t working so I had to. I was only the bread earner so I had to work very hard for this. So this is the cause of it, you know.

But did you have rheumatic fever, for instance, when you were younger?

I was told and I asked my mum because I come from East Africa. I came in this country in ’72 and my mum told me that I did have rheumatic fever when I was a baby. And that’s what, you know, that thing, this is what the cause was about it, that I might have a rheumatic fever when I was very, very young. When I was born with that and I had a murmur. 

Mahendra’s information about heart failure and treatments available has come from medical leaflets and television documentaries.

Have you used the Internet much to find out information about heart failure or about ICD treatments. Have you used the Internet at all?

No but I did read some of the leaflets when I go to hospitals and I do read some of them and that does sometimes. I’ve seen, you know, sometimes television programmes. They do help me because I watch a lot of programmes on Channel 4 sometimes they have ‘Embarrassing Bodies’ and sometimes they do teach you a few other things in life what you learn.

So one of the sources of information has been the television?

Yeah television.

And the medical leaflets?

Leaflets, yeah.

Mahendra had to stay in hospital before and after his ICD was fitted where his warfarin was replaced by heparin before having surgery.

So you went into hospital before the ICD was fitted?

Yes.

And they changed your warfarin for heparin.

They had to put me on heparin.

Can we talk about it because that is a very specific case. So how long before did you go into hospital?

They called me a week before that, you know. And they told me that, ‘Ok we’ll take you on certain days but we’ve got to make sure that your’. They put me on heparin to make sure that the levels dropped before they can insert this defibrillator, you see.

Yeah because they have to 

Yeah they’ve got to make a cut to put it in.

And it’s always a danger of haemorrhage and

Yeah

When you are on warfarin

Warfarin yeah

Yeah. And then you had to stay. A week before the ICD was fitted

Yeah

And a week after it was fitted?

Roughly nearly a week but it was as soon as the INR was up again back to normal they just told me, ‘Ok you’ll be alright now.’

Mahendra explained the monitoring that followed his surgery to put him back on warfarin.

Do you remember how soon after the ICD was fitted you went back on to warfarin?

They had to put me slowly back to warfarin because soon as the operation was done from next day they had to check the INR and according to what levels my INR then they had to give me that much warfarin, you know, those levels, like 5mg or 6mg to go back to normal, you know, what my targets are, you know 3.0 to 3.5. So soon as it was up to 3.0 they just told me, ‘You are aright now and just carry on with this’, you know, warfarin until everything comes back to normal. And you just have your INR checked at [muffled name of hospital] hospital, you know, where every. Soon as they check my INR and they tell me after how long do I have to come back again and have my INR checked.

Ok roughly how often do they check the warfarin?

Well I have to sometimes go, it depends you know, if my INR goes down when I have an INR checked and they say the levels have dropped down then they say, ‘Right come after a fortnight’. And after fortnightly they check it and see if the INR is gone back to normal then they say, ‘Ok come after 4 weeks now’.

Mahendra was told that the ICD device was going to help with his palpitations and so to improve his quality of life.

So do you remember how she (nurse) explained to you the procedure?

Yes she told me, ‘This is the device. It’s going to work like this’, you know. ‘And it is going to be much better because of your health as well because of your palpitation as well’. Because my palpitation was going up and down, up and down and my heart was not going in the rhythm. And [ah] this one did improve my rhythm as well because if anything happens they told me that the heart can shut down and restart again, you know, with ICD. And you will never, you probably won’t notice it, what’s happened because when I go for a checkup that’s the time when they check it and they tell me that this time it went on this date and this time. ‘Did you feel anything?’ And I said, ‘No nothing at all’, you know. But they know exactly what’s happened and how long was the charge.

Did you have to wait long to have the ICD fitted or no?

Oh because I kept on having this problem so the doctors had to refer it to specific consultants and they had to make a meeting and when they made a meeting they found out that this was only the solution, was the defibrillator that will improve my health, my defibrillator because I used to have a lot of palpitation and I was getting very tired, very sleepy and everything. I could not do things that I could do before and this was only the solution.

But how long since you had these symptoms?

They took nearly five years because they wanted to make sure that [ah] but, you know, they found out that this was the cause that I needed to have a defibrillator so they made up their mind after that because I had surgery in 2003 and I had a defibrillator fitted 2007.

I was getting tired and I wasn’t, my palpitation, you know, sometimes I had to go to hospital for a checkup. Sometimes I could not even walk. I had to have a wheelchair because this was going up. Some days it was ok, some days it was not ok. So they suggested this defibrillator ICD was the one, I could have it, you know.

Do you think they waited too long to fit you with this ICD 

Because…

…or do you think it was the right time to do it?

I think that was the right time because that was a new technology came out and they thought that that was the technology they could fit, that could improve my health. And that’s why I had this particular and I have it fitted in, defibrillator

What do you think about the support you have been receiving from the ICD nurses, the consultants?

It was very great because they are the ones who looked after me and then encouraged me and they said that it’s going to improve a lot. So I thought this was very good, you know, that they were really looking after me and they were concerned about my health more. So I thought it was better I leave it up to the specialists who know what they are doing and they encouraged me to have this one.

Mahendra knew he was not allowed to drive for 6 weeks after his ICD was fitted and worried about how to get to work and care for himself.

So did you have any concerns when they suggested for you to have the defibrillator fitted, the ICD?

Yeah because I was in employment and at that time I was getting a bit worried because I was thinking that if I have a defibrillator fitted that they were going to take my driving license away and I could not drive or do anything like that. So I was getting more worried about that. But it overcome that I had to speak to one of the specialists in name Hospital and she suggested, it was nurse name who deals with the defibrillator unit up in name Hospital. She wrote to the DVLA and explained to them that I was sensible and I was, you know, fit to drive. She persuaded them and they had to go through their medical records before they gave me a license to drive again. 

Ok so you main concern was to do with work rather than any, sort of you were not concerned about the operation itself or

No because I knew I was in the best hands and I had a lot of backup from the hospital, you know, and I had a very good, you know, nurses and all that who looked after me and that did encourage me to have this thing done. And that did improve me a lot. They gave me a very good support as well, you see.

You needed your driving license for work?

To drive at work and to drive me around as well because I could not depend on anybody, you know. And this was the case that I had to, you know.

You were living alone?

I was living on my own, you see, and it was very, very difficult for me, you see, so that was the thing.

Mahendra had a nurse with him throughout the procedure and says that recovery time was one and a half hours.

If you tell me about it?

Right. I was being. They told me that we’ll take you in the theatre. You’ll be still awake, you know. And they took me there and they told me they had. I was. Said that, ‘You won’t go to’, you know, ‘They won’t put me to sleep or anything but I will be conscious and they’re talking to me all the time’. So one of the nurses was talking to me all the time. They just made a cut and they had to put wires. They had to put three wires from there into my heart chambers and when, if that was fitted it took about 45 minutes and after that I was, you know, they checked it and everything and I was back in the ward nearly an hour?

Where they had to put my, defibrillator that part only was numbed and that’s only the thing that was, the thing. After a while about an hour, hour and a half I was feeling fine.

Mahendra’s anticoagulant treatment was stopped before surgery and re-started again after his device was fitted. He was in hospital before and after the procedure.

And how long did you stay at hospital?

I stayed over there for nearly a week.

A week?

Yes

Why is that?

Because they had to make sure because I was taken off warfarin and I was put on to heparin because of my blood thing. They had to make sure that I would go back to my warfarin levels, my warfarin levels are target from 3.0 to 3.5. So they could make sure that the level was up to that data, up to the required standard.

So you went into hospital before the ICD was fitted?

Yes.

And they changed your warfarin for heparin.

They had to put me on heparin.

Can we talk about it because that is a very specific case. So how long before did you go into hospital?

They called me a week before that, you know. And they told me that, ‘Ok we’ll take you on certain days but we’ve got to make sure that your’. They put me on heparin to make sure that the levels dropped before they can insert this defibrillator, you see.

Yeah because they have to 

Yeah they’ve got to make a cut to put it in.

And it’s always a danger of hemorrhage and

Yeah

When you are on warfarin

Warfarin yeah

Yeah. And then you had to stay. A week before the ICD was fitted

Yeah

And a week after it was fitted?

Roughly nearly a week but it was as soon as the INR was up again back to normal they just told me, ‘Ok you’ll be alright now.’

Do you remember how soon after the ICD was fitted you went back on to warfarin?

They had to put me slowly back to warfarin because soon as the operation was done from next day they had to check the INR and according to what levels my INR then they had to give me that much warfarin, you know, those levels, like 5mg or 6mg to go back to normal, you know, what my targets are, you know 3.0 to 3.5. So soon as it was up to 3.0 they just told me, ‘You are aright now and just carry on with this’, you know, warfarin until everything comes back to normal. And you just have your INR checked at [muffled name of hospital] hospital, you know, where every. Soon as they check my INR and they tell me after how long do I have to come back again and have my INR checked.

Ok roughly how often do they check the warfarin?

Well I have to sometimes go, it depends you know, if my INR goes down when I have an INR checked and they say the levels have dropped down then they say, ‘Right come after a fortnight’. And after fortnightly they check it and see if the INR is [ah] gone back to normal then they say, ‘Ok come after 4 weeks now’

Mahendra explains it takes time to notice the benefits of an implanted medical device but that it has definitely helped to control his palpitations.

Now how long after the ICD was fitted you started feeling better, did you start noticing the difference?

It takes day by day, you know, you find that, you know something is improving. It will take months and months and months sometimes. It is just improving little by little. Then you can notice yourself that this device is doing something for you because where you had palpitations and sometimes going, I had even heartbeats as well. Sometimes it goes very fast then it stops suddenly then restarts again. I used to have that rhythm: di, dit, dit. The heartbeat was not in rhythm. It was going out of rhythm. So this one did help me a lot with that, the defibrillator did help me because it notices that once if your own heartbeat is uneven it will control, the ICD does control slowly, slowly and I feel that. I feel a bit better with that ICD.

Before I sometimes used to walk about 50 to 100 metres and I used to get tired.

Ok.

And I’d feel breathless and after this device was fitted I felt I could walk a little bit more than that but its ups and downs sometimes. If you are not feeling very well sometimes you do feel that you cannot. Sometimes you can walk 200 metres, 300 metres. You can walk for half an hour and suddenly then some days you can’t because it depends on your health, how you feel. Some days, every day is not the same. Sometimes it goes up and down because you might be walking very, you know, too much so you get tired. So this is what it is, you see. So you have to take slowly at a time, you know, take fewer, few minutes every day and it does improve.

What about the palpitations, have they gone?

Yeah because it’s one of those things, you see. The palpitations, you know, now I don’t feel, you know, like that at all but it depends. Sometimes it’s the days when you are not feeling well when you’ve got cold, cough and things like that, not feeling well. 

Recovery. It’s a bit slower but in the long term it’s very good for you. It does help you a lot and you find much, you know, much better in your life and does encourage you to go ahead, you know. Some days you feel down, some days you are up and you know you are doing more than you want to do.

Mahendra's implantable device is usually checked every three months and he sees the cardiologist once a year.

Some time, every three months I used to go because they had to make sure that, [ah] you know, because of my batteries and also their records as well to make sure that I’m not having any problems and everything was running ok. So I was, I was, you know, I was very, very backed up with those people and they told me a lot of things and that’s how it encouraged me to have this thing done.

So every time you go you continue going every three months?

Yes. I have to go every three months because they give me the dates when I have to go and have it checked. I have it checked and everything and they give me another 3 months to make sure that everything is running ok.

Apart from checking the device anything else they do at the hospital, blood tests or ECGs or?

If they think there’s something wrong then they have the ECG done but so far since I had the defibrillator fitted I didn’t have any problems so, you know, they always tell me every three months but I go once a year for a checkup at name hospital. That is when they do my echo. They do my ECG and I have a chest X-ray as well.

Ok so once a year you see the cardiologist?

Once a year, yes, cardiologist yeah.

Ok.

To make sure that everything is fine. And they told me I was doing very well now.

Mahendra is due to have the ICD battery changed under general anaesthetic.

Do you know what they are going to do then?

They told me that they were going to replace the new battery but they will put me under general anaesthetic so this time. So I don’t know what else they are going to do so.

Again would you need to go into hospital a few days before?

They told me that it is not necessary. I don’t know why but they told me I have to go through Day Surgery thing. So I am going to go for day surgery. That’s what they said.

For day surgery, ok. Any questions, any concerns about it or?

No because I know I had it done once so, you know, I am not worried about it.

Mahendra feels well and says he can work as well as those who are fit.

It doesn’t seem that having a heart condition or having an ICD fitted has had any effect on your work life?

No, no, not at all. I feel much better and I can do more work than people who are fit. That’s the push.

Ok. So you work 5 days a week and?

Sometimes I have to work 6 days. It depends because I am a security person so I have to work any hours which I get because they tell me sometimes, ‘You have to come Saturdays, Sunday’. I have to work.