Daniel
Daniel was diagnosed 3 years ago with cardiomyopathy and heart failure after experiencing breathlessness. He takes medicines and has an ICD but continues to experience breathlessness and fatigue and can do very little physical activity, which frustrates and angers him. He cannot work and lives off state benefits.
Three years ago Daniel started having panic attacks in the night because he couldn’t breathe, then he became increasingly breathless at work. He went to his GP and to the hospital casualty department repeatedly but the doctors could find nothing wrong and suggested it was stress related and prescribed anti-depressants. His symptoms continued to worsen until one day he collapsed at home. He was rushed to hospital, where a CT scan revealed that his heart was enlarged and they told him he had cardiomyopathy and heart failure. Various medicines they tried didn’t work, so Daniel was transferred to a specialist heart hospital where he was assessed for a possible heart transplant. Although he was deemed suitable, a transplant wasn’t needed because, after removing a large amount of fluid from Daniel’s body, the drugs then began to work and his condition was stabilised. The right ventricle of his heart returned to normal size but the left remains enlarged and his mitral valve leaks. The doctors told Daniel that his cardiomyopathy had probably been caused by a virus, although he doesn’t recall experiencing any viral illness before the heart failure symptoms started.
It took Daniel about a year to recover, during which time his company continued to pay his full salary. He tried to return to work but just couldn’t do the job anymore, so had to quit. He was put on a cardiac rehabilitation course but could not complete it. Because he had lost weight during his initial illness, he was encouraged to gain it again but now needs to lose some if he is to remain eligible for a heart transplant in the future. He feels tired most of the time and spends a lot of time in bed, although he finds it difficult to sleep because his brain is not tired. He can do very little activity before becoming exhausted and breathless, so has to pick and choose what he will do each day and relies on his mother to look after him. He has no pension, so he receives state benefits including a car supplied through the Motability scheme with a disabled parking permit; he also uses a mobility scooter; his mother receives Carer’s Allowance. Daniel’s fluid balance is under control thanks to diuretic medicines (water pills) and a restricted intake of fluid in food and drink. Other medicines he takes for his heart condition include warfarin, ivabradine, carvedilol, ramipril, digoxin, omeprazole, and eplerenone.
A few months ago Daniel had a single lead ICD implanted, which is monitored automatically by a machine in his bedroom that sends data directly to the hospital down a phone line. He has had it checked and downloaded twice at the hospital so far but doesn’t know how often this will happen in future. Daniel sees a community heart failure nurse about once a month in a clinic run from a local GP surgery; he can also contact the nursing team by phone during working hours if he needs advice. He sees a cardiologist at his local hospital about twice a year. He sees the transplant team at the specialist hospital, where he goes about every three months for a thorough check-up, which includes a physical examination, blood tests, an ECG, chest x-ray, weight, blood pressure and heart rate measurements, and sometimes an echocardiogram and a right heart catheterisation ‚Äö√Ñ√∂‚àö√ë‚àö√Üinsertion of a special catheter into the pulmonary artery in the heart to measure the blood flow and pressures inside the heart and lungs. He can also contact the specialist hospital team at any time, including out of normal working hours, if he has concerns. Once a week he checks his own weight, blood pressure and heart rate, using equipment supplied by the local hospital, and sends them the figures by text. He receives a text reply stating whether things are stable or he needs to contact his heart failure nurse. Daniel also sees a GP once a year for a general check-up but the GP doesn’t alter any of the heart failure treatment. Because he takes warfarin Daniel has a blood test to measure his clotting time once a month at the GP’s surgery.
Daniel’s heart failure is always on his mind. He feels frustrated and angry that he cannot do things that he used to enjoy, including playing games with his children, although he spends more time with them now that he isn’t working. He continues to take an anti-depressant and also speaks to a therapist from the community heart failure team who visits him at home every couple of weeks when he feels particularly low.