Heartnet cases one to eight

Case One – Extended family support helps a patient cope with heart disease This lady of Pakistani origin had her heart attack at the age of 63, after which she had a coronary bypass surgery, she is a housewife who lives with her husband and three children in east London. She admits that she was worried about going through with the surgery but says, ‘my husband insisted that I go to hospital (for the operation)’. One of the sources of help that she found most useful was, ‘a cousin who is also a heart patient he told me from the perspective of a patient and not the doctors. Believe me that his words helped me more than what doctor did tell me. Doctors don’t know what things worry the patient only a patient can address all those concerns’.

She says she also received a lot of support from her brother, ‘I used to call him every weekend and we used to have a long chat about everything and that proved to be very useful. He told me that everybody back there in Pakistan was praying for me, from the time they took me to the operation theatre and till they heard the news that the operation went well and I was out of danger. These little things really gave me lot of energy to fight back’.

But she admits that sometimes peoples’ concern can become too much, ‘the thing which happened along with peoples’ concern was that some 150 people came to see me there in hospital, the nurse came to tell me that it is an intensive care unit and I am having a lot of visitors’.

Friends and family were supportive after her discharge from hospital and instead of coming at once to see her, spread out their visits to her home, ‘Yes certainly as because of this they do not let the patient feel bored and she does not get time to think about the illness, by seeing one family at a time you will have more days covered free from boredom’.

She says this about her life after her discharge from hospital, ‘it was not easy keeping to a healthier diet, but my daughter said if I eat any thing in front of her which is bad for my health then she will eat it too, this really made me worried and I decided to eat a more healthy diet’. She goes on to say ‘the family have to suffer even more then the patient as they have to eat all those things, which the patient does. If they don’t do that then the patient cannot maintain her appetite in other words it has a positive effect on their health’.

The positive effect on her family is replicated in another way as well, ‘my husband walks with me so that I don’t feel alone. My husband has supported me all these years and I think that has helped him as well because he is now going for a walk, eating healthy food etc. by doing this, unknowingly, he is helping himself to avoid from lots of diseases’.

One of her sons helps in other ways as well, ‘my son, he is always reading the prescriptions of my medications which came with the packs and have all the information about the medicines and after reading them he tells me their side effects and that helps’. Since my brother’s death followed by my heart attack there was quite lot of scare in the family that anyone of then could be the next victim, my son also went to the GP to get himself checked along with my daughters, so I think my heart attack was more of an eye opener for whole of the family.

As well as changing their lifestyles there are other ways in which her family have helped, ‘I cannot do all these things and that has put a burden on our family as now my husband has to do all these things. He drops the girls at the bus stop and then picks them up later in the day.

He is the one who goes shopping now. I used to enjoy shopping a lot that is why I used to go there twice every week but not any more’. However there are times when they have to leave her, ‘If we are invited anywhere they opt to go there by themselves rather then taking me with them as they know I am not comfortable in those long parties.’

As well as close family, friends and other more distant family members have been supportive as well, ‘most of my friends and relatives do give advice and I usually follow them. One of my relatives told me some home remedies to help me cope with my condition. It was using onion juice along with garlic every morning before breakfast on an empty stomach. It opens your arteries’.

Case Two – Subtle support from a spouse This 59 year old gentleman was originally from India. He feels that there is a difference between the way in which people have to cope in the UK compared to the subcontinent, ‘In India and Pakistan there are our neighbours and then our relatives who can share the burden but here this is not the case. Here if my family has to take responsibility for me, while I am in the hospital there would be no one to support my wife and my elder son, which is not the case back in our countries’.

He admits that he was worried when he was first diagnosed but, ‘I can’t say that they were giving me advice but they were trying to calm me down, they were trying to encourage me not to worry & that everything will be fine. At time of my test I was very worried but my wife stood by me & encouraged me to go for it, she told me that she has belief in God and that God is gracious who will not do anything bad to us’. He finds that his wife is very helpful in the sense that her concern is subtle, ‘my wife always cooks food which I like and we all eat the same food but sometimes when she cooks some traditional food then she uses white meat & decreases the quantity of oil. She specially cooked chicken and vegetables in a different style every day so that I never get bored with these things’.

She always takes care of my medicine timings without showing that she is concerned and she never forgets. She just observes, have I taken my tablets or not? Or have I gone for walking or not and if I am not following my routine only then she intervenes’. She also takes part in some of his hobbies, ‘If I am working in garden, she joins me and shares the load’. His sons have also helped, ‘my sons live with me so they have taken most of my responsibility as now they go out for shopping with their mum they don’t bother me for this anymore’.

He also finds that she is very willing to deal with other people on his behalf, ‘besides that my main source of knowledge is my wife. In these past years she has developed quite a good source of knowledge by talking to other patients and to other relatives, she is quite a popular figure in this area so she keeps on telling me how to move ahead in my life and I follow her advice’.

He is concerned about some relatives who have also been diagnosed with heart disease.

‘They did not take this problem as seriously as me. They continue to practice the same lifestyle as before. One of them is still a chain smoker and other one is too busy in earning money that he has no time for himself he does not realize that all this money will be useless after our death’.

However he has been able to help others, ‘I am talking to a relative who is very frank with me, we used to discuss his cardiac problems since he says I am his ‘senior’ in this disease and I know quite a lot of things more than him. It feels good when you help someone. As well as advice he has been able to provide reassurance, ‘I provide the literature and verbally advise him. My neighbour, was very afraid of a bypass, I told him and tried to guide him, that look I am perfectly fine and doing my all work properly like driving etc. just as I was before my bypass and I am not facing any difficulty. Then he decided to have the bypass surgery’.

Case Three – Telling others about your heart disease This lady aged 63 originally came from India. She says, ‘After my illness my daughter and daughter-in-laws never allowed me to do any thing. They make ‘perhaizy’ (healthy) food for me, never give any strain to me and they know that if they don’t clean the house I will do it so they now clean the house in time’.

‘I have four people in my family who are doctors, two sons and two nephews, they do give me lot of advice but they don’t force it on me’.

She finds that one of the ways in which her family try to help is by giving her any bad news gently, ‘My close relative died, at first they didn’t tell me and when my son came from the office then they prepared me by saying that bad things always happen and everybody has to return back to God and then they told me’. However, she disagrees with her husband’s approach of trying to hide the state of her health from others, ‘he is always very against sending any news back to India. He was also not in a favour of telling the news of my heart attack but I asked my daughter to tell everyone as then everybody could pray for me specially my mum she is 87 years old and but the grace of God still doing well’.

She regrets not having told one of her friends about her experience, ‘among our friends we discuss our problems, when one of my friends got a heart attack, she told everyone else after getting discharged from the hospital about how it happened and what the doctor told her to do. After that she told us how she could have saved herself from much disaster if she would have known that I had a heart attack. In her case she was getting this pain for more then eight hours and she was taking painkillers and sedatives, so once they diagnosed her as having a heart attack, according to the doctor it was too late, by then, for some medications to be given which could have limited the destruction of the heart’.

In terms of how her family have helped her to make lifestyle changes she says, ‘In the beginning they were very afraid and they cared a lot, but with the passage of time & looking towards my condition they feel relaxed and the realization of the fact that this condition can be treated was a calming thought for them’.

One of the reasons why she feels she has had to tell other people about heart disease is because although friends and relatives want to help, with providing the right food, for example, ‘they themselves don’t know what they have to ask me for’.

She does regret discussing her health with one of her relatives. Her doctor had stressed the importance of exercise, but, ‘he did not mention when during the day, he just asked me to walk but then one of our relative told me that it is good to after your dinner as it digests all the food and avoids a heart attack.’ However this led to breathing problems and she has since realised that walking immediately after eating is not recommended.

Some relatives have been more helpful than others, ‘Yes my brother has this disease but I don’t talk to him about anything related to my disease. However he always discusses his health with me in every phone call I make to him. He always waste most of it, crying over his problem about what is happening to him and how his life has turned miserable after this heart attack (he got the heart attack after me) and he is so fussy at times, because of that I just could not cope it any more, whenever I talked to him I go into depression, so now I seldom call him’.

However some people she had deliberately decided not to tell very much about her health because, if they would know about the seriousness of my problem then they could be even more positive but that would be linked with lot of worries and I don’t want that to happen.

Case Four – How sometimes old friends don’t help and new ones do This 67 year-old gentleman originally from Pakistan had a heart attack and subsequently a coronary angioplasty. He lives with his wife and two sons, one of whom is married. At the time of his illness he says that his relatives were not very helpful, ‘One of my relatives said that it’s a dangerous disease, I don’t know why but they want me to be in a state of fear. After that my wife started crying. Then I said, ‘don’t behave like that, not everyone dies because of heart disease, it depends upon God‘.

His stay in hospital was not very comfortable either, ‘I did not like getting food from my friends in the hospital. It adds an added burden on me, as the nurses don’t like you to eat anything from outside, beside that if someone is sending korma and biryani to the hospital, how can you eat those things? We don’t have the privilege of a separate room, there are 4 to 6 patients in a room and sometimes it is really awkward for you to eat those things in front of all those patients’.

He says this about managing his diet after his illness, ‘Will all your family eat what the doctor asks you eat? No they will not so you will continue to eat what your family eat - the same oily and fatty stuff’.

He made friends with other patients from hospital and has been able to pass on useful information to them. ‘I was admitted for my bypass. We were operated on same day by the same surgeon, so our routines were the same he was also from East Ham and it was good getting along with him as he was having the same problems which I was having. So we tend to know what we are going through, then we were having quite the same problem. He himself did not know about the disease until it happened and it was a good experience knowing a local Englishman. We have became very good friends, since the time my wife brought two bouquets, one for me and one for him on the fourth day of our operation it was quite nice’.

Regarding the cardiac rehabilitation courses at the local hospital he says, ‘there were lots of problems, firstly, there is a parking problem so I recommended that they did not come in their cars and take a lift instead, that way they could avoid a lot of trouble. Then I recommended for their comfort and safety to wear loose fitting and comfortable casual clothing. Ideally soft footwear or trainers are most suited while exercising on that equipment.

And all of them were always very happy to take this advice of mine that saved them from lots of undue trouble’.

He goes walking and sometimes has another heart patient for company, but he says, ‘the important point is that never arrange to meet someone at your home when you go for a walk.

If he does not turn up then I won’t go, because if you rely on him and he is not going it will definitely fizzle out. I arrange to meet people in the park, that way if they do not turn up, then at least I can carry on with my walk’.

He is unhappy about the reaction of friends and family to his condition, ‘our community is very unsupportive when it comes to helping people in following advice. For example our community don’t care what to cook when they invite any heart patient, while the English person will not ask any heart patient to come if he thinks that that food will be unsuitable for him or he will tell the patient before about the menu so that you can arrange yourself some other thing, but our community first they invite and then they insist you eat those things’.

The same also applies when he visits relatives in Pakistan, ‘It is very difficult to tell everybody (in Pakistan) that these things are prohibited to me by doctors. When we are invited on dinner or in marriages people didn’t realize that, for example, they say please don’t be formal etc., but despite that it is difficult to say that some foods are restricted. Our Asians are always in lahaz and sharam I don’t know if it’s a good thing in us or a bad thing but it’s there. We cannot say ‘no’ to anyone. But I must confess that it’s all changing there now as well, as now in Pakistan people get awareness about heart disease from TV programmes and newspapers’.

Case Five – Shared interests and other patients This Pakistani gentleman who lives alone after his wife’s death, spoke about the help he had received from people he had met after his heart attack, ‘it was Mr. Smith (my neighbour) who forced me to go for a walk with him as he is a heart patient himself and he really takes care of himself. I was not that careless about my health but after my wife’s death, it became very difficult and my neighbour has been very helpful’.

As well as his neighbour he has also received help from people he met in the coronary care unit ward, ‘my first emotional support was given to me by my fellow ward patients. I think it’s good to discuss your problems with them as they are travelling in the same boat as you are and they at time can give you a lot of emotional support, as well as that you can give something positive to them. It’s always good to talk to others’.

He says this about how his friendship with two of the patients started, ‘On my fourth day in hospital I found two people, they were talking in Urdu, I asked them if they were Pakistanis as you tend to find lot of us Pakistanis here in East Ham. They said ‘yes’, then I joined them.

Every day we used to talk for at least two hours in the courtyard in front of the cardiac ward.

Before leaving hospital we exchanged our numbers so we can carry our friendship outside and since we are not living far from each other, we arranged a gathering once a week’.

There were other patients with whom he talked and he says, ‘We talked about the daily news if someone is very depressed we sometime specially go to have a word with him, if someone is going for some test we talked with him if he is very worried it really helps but it was all unintentional you don’t have to be a friend to help someone sometime’. He used to go to cardiac rehabilitation sessions with these people and says of the sessions, ‘I made a lot of friends there and then you can say it was a place where we all used to meet and discuss what we have done during the week, such as how was our exercise going, what medicines we are taking, what are their reactions are on us and when you had heart attack what did you feel and how did you feel?’

He has also found discussions with other patients at the cardiac rehabilitation groups to be useful, ‘I gained a lot of courage from seeing other patients who are not as young as I am doing all those things so keenly, it really put a lot of stress on me to do well. When they ask you how your week went it is very embarrassing for someone to say that you could not do any exercise or any other thing when everyone else there has done it, so it is a motivation for you to do as you are told, as they all want us to do well in our future life’.

Some of the people who he has met are English, but some are Asians as well and he’s found that he has been able to help one of them deal with the health service, ‘he always calls me whenever he is going to hospital. Once I went to hospital with him, as his English is not that good, so he was unable to understand most of the things which doctor told him. Once I went with him I also got relevant information, which helped me as well as him’.

In terms of changing his diet and exercising more he says, ‘I didn’t much change what I eat because I like light food so it is not oily food I am eating. The doctor also advised me to go for walks, so I told him that I go jogging and swimming, so my routine remains the same but now I go to the gym regularly because of my friends. They were not good at exercising but now we have decided that we will meet twice a week at the gym rather than meeting at someone’s house and we will chat after doing some exercise. It doesn’t benefit me as much as it benefits them but then that what friends are for and it gives me motivation to carry on with my disease it give me positive effect psychologically.’

He has received useful information himself. Once one of the patients told me about the sublingual tablet, that if I am not comfortable with the spray I can use it in tablet form. You see we don’t go to our GP to ask these small things. I did not know about that, but once I did, I asked my GP about that and she said that it’s my choice as to what form I think suits me …so these friends do help out a lot without you noticing it.

Case Six – Heart disease and the impact on family relations This 64 year old lady of Pakistani origin says the following about cardiac rehabilitation groups, ‘I made two friends there. We went to the rehabilitation group together and I must admit that I attended the group because of them. One of them used to come and pick me up.

Soon after we were both discharged from hospital she called me at home to ask how my health is, then we made a plan to go to the library together to find out what went wrong with us.

My husband and two of my children support me in all aspects they can, they don’t want me to do any work or carry any heavy weight they don’t want me to go alone to an place which is far from our home even though I have got my driving licence back now and I can drive but they don’t allow me and I eat different food to the rest of the family even though now more then 10 years have passed. Sometimes I do feel very weak, I try to follow the advice of doctors and I exercise daily but sometime on special occasions I do eat some of those oily foods.

She finds it difficult to go outside for exercise and says, ‘I had my exercise machine placed in my room but then it was all to boring then my son put it into the lounge room, now I don’t feel that I am doing something just because I have to do it. I do it while seeing the television’.

‘Everyone started giving me more time than usual, my husband contacted other Pakistanis in the locality who were not our friends and told them that I need their company. My elder son sometimes drops me at their house in the morning and my husband picks me up from there.

However she is not so happy with her younger son and his wife, ‘He does not care for me. He is playing in the hands of his wife. His wife has forgotten who she is, where does she belong?

Now she calls herself English, but there was a time when she came from Pakistan, she did not even know how to talk to people. I gave her courage and now look what she has done to my daughter and me.

Her health has been affected by quarrels within her family, ‘I think that they didn’t care because they know that I am not feeling well but because of their fighting I again shifted to hospital. After my husband, only my elder son looks after me and now your son is not yours he thinks about his wife and family, not for me. All my daughters are married and they are busy in their lives with their children, the one who lives in London comes to me once in a fortnight but not daily. When she comes she makes food for me because she knows that I cook food by myself so she makes many different dishes for me because at this stage of life I can’t work’.

‘My other daughter there in Karachi gets very worried she tends to call me quite a lot now after my heart attack she calls me on every weekend and I call her on Tuesdays and Thursdays. She initially had this idea that her brother does not care for me and that is why that heart attack happened. Some of my relatives back there in Karachi gave her that impression, that your brother and sister-in-law must not be taking care of your mother that is why she had the heart attack. Since then I feel quite guilty as my son has done so much for me and I could not do anything to save his reputation in the family’.

My daughter came to visit me at home from Pakistan after almost 1 month of the first hospital admission, my daughter-in-law and my daughter had a fight on some issue. I didn’t know till now why they were fighting but I heard their loud voices and I felt that something was hammering in my head and I started feeling pain in chest. I called my son to stop them fighting but nobody was listening to me then I tried to get up from the bed and suddenly I fell down after that I don’t remember anything till the time I opened my eyes to find myself again on a hospital bed.

Case Seven - High family expectations This gentleman originally from India was 55 when he started to have angina pains and was taken to hospital with a suspected heart attack. Although nothing had happened on that occasion, doctors recommended that he change his lifestyle and start taking drugs to reduce his blood cholesterol. He is a widower and lives alone, though sometimes he visits his son’s and daughter’s families. He says, ‘I built my whole family after my parents but now they have no time for me. So now I really felt the need of anyone who loves me, cares for me, waits for me at home. I mean to say I need a personal life’.

My doctor advised me about lifestyle changes and sometimes I go through the articles and (British) Heart Foundation leaflets, actually my son give me these leaflets he found them at some pharmacy shop those were quite helpful and I also watched programmes on TV there are some useful program called ‘ Sehat aap ki Maswara Hamara’ coming on ARY these days that very useful.

In terms of changing his diet and the role of his family he says, ‘No they never used to make any special dishes for me and I did not even ask them to make special dishes. I used to select the food which was good for me e.g. if there is food there which has lot of oil in it I know that that will give me heart burn so I tend to avoid it. If the food is too spicy I try not to eat much’.

Although he tries himself to eat more healthily, the task is made more difficult, with the advice he gets from friends one of whom said, ‘I need good, rich, meaty food & he advised me that if I am not able to make such food at home, I can purchase it easily at local restaurants’.

I had 3 sons but only one is taking care of me when I was admitted in the hospital he visited me daily he cares for me a lot he bring my things and medication for me.

‘In India they need lots of money every year to meet the requirements of life and I tried sharing their load as much as I could. This sometimes started a fight between my (immediate) family and me, as they want me to stop sending the money abroad and give them a better life here’. These arguments used to cause him stress and he realises that for heart patients it is important to manage stress, he says, ‘If I get tense I try to come out of that situation & try to solve it as soon as possible. Now I have applied the policy to stop worrying about other people, I have become selfish and it has solved most of my problems’. This has not been easy because ‘although my relatives in India realized that I had a heart attack, they were more concerned about the marriage of my youngest sister, but I guess that is also important, it’s very difficult to find good partner and she herself is in her mid thirties’.

He has found it useful to talk to other cardiac patients, ‘I think the most important thing, which was most helpful was given by a patient who was over 87 years old and yet he had the urge to live. I met him in cardiac rehabilitation, I thought if he is willing to do all this at this age then why not me and that was it, since then I went for it’.

When I went to Bombay last year there was a some difference in my appearance as, one, I had that heart attack and two I had this weight reduction as I was following the advice of the doctor. But back there everybody blamed my son giving the wrong impression to my daughter that my son is not taking good care of me. They talked in the sense that my son does not give me any food and is starving me, listening to all this my daughter called him and had a fight with him giving him the impression that I have said something against him to her.

Since then I feel quite guilty as my son has done so much for me and I could not do anything to save his reputation in the family.

Case Eight – Culture and dealing with heart disease ‘I was not sure what to do and my family was also very indecisive, whether I should go for a bypass or not. I asked my children about their advice they all told me that it is my life and I should be the one who should be deciding, so all these things did not help me at all, making me unsure whether I should go for a bypass. When I discussed this with my elder brother back there in Pakistan he told me that God has blessed me with this opportunity of having this operation done in one of the advanced countries of the world where everyone from the world comes to get themselves treated and by the grace of God Almighty I am in that country and now if I don’t go on to have myself fully treated it will be just as saying no to the blessing of the God.’ Regarding exercise he says, ‘I could not do the exercise initially but then one of my friends asked me to join him on a golf course since then I go to play golf regularly. Before that I would go walking for one day and then skip the other day. As it was very boring I opted to go on exercise weekly. Now I have made sure that I go to play golf every day, that way I make new friends as well as keeping my exercise going.’

‘Getting information is not that difficult these days and I think it is not the information that is important; it is the implementation of the information. For example you can get information from doctors, from nurses, from books and from the computer but the difficult part is following them, for me my religion has solved most of that problem for me.

‘Everyone now wants me to rest and they blame everything on my work. They don’t realize that if I stay at home all the time doing nothing that itself has a bad effect on my health as I then consider myself as a useless person, I don’t know why everyone does not realize that the heart attack does not mean that the person’s life has ended.’ In terms of lifestyle changes he says that his wife prepares food specially for him, but his family’s diet has not changed, ‘I know one thing for sure, that they are all eating those fried fishes one or twice a week, as they are usually found in our refrigerator but I don’t know when they eat them as I never saw them eating in front of me.’

We are always running short of money not for us but for others I tend to send lots and lots of money back to India all my life. And that is the reason I keep on doing these jobs, my wife always asked me to rest or if I want to do the job try avoiding heavy and lengthy jobs, such as she wanted me to try avoiding painting and other stuff like that.

One of the causes for stress in his opinion is the behaviour of his (adult) children, ‘My children just know one thing, which is how to criticize their parents and no parent likes that.

We both know that there are lot of things, which are perhaps wrong in us, but even then we are their parents. What they are today is all because of us, but after getting their education they think that they have become smarter than us, but even that study happened because we gave them money and our everything and now once they have achieved something they think that we need to be changed. I am not against revolution I am against the way they are trying to change us. I want them to advise us and not to command us. And after my heart attack they have realized that a bit.

No not to an extent that you can call them my friends yes but I know them. I knew why most of them were there, they know why I was there. I knew what were their concerns but you cannot call us friends. It’s just like your neighbours, you tend to know about your neighbours but they are not your friends the same case was with us.