Cardiomyopathy
Scottish Support Group
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REGIONAL INFORMATION DAY... Stirling 17th April
NEW booklet now available - Cardiomyopathy In Children and Young People
Scottish Regional Clinic update
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The following are common questions, sent to the CMA and answered by Dr. Perry Elliott, senior lecturer and honorary consultant cardiologist, The Heart Hospital, London
Is it safe forIs it safe Is it Is it ok for someone with dilated cardiomyopathy to Cosmetic Cosmetic surgery and cardiomyopathy ?As with any surgery, the risk must be assessed in each individual. The idea is to tailor the risk to the individual. Cosmetic surgery should be considered as a surgical procedure. As such, a proper medical history should be taken. The risks are more in relation to the severity of the heart failure symptoms and heart pump function than anything else. Practical issues such as whether the patient can lie flat for enough time need to be considered. If the patient is on warfarin this also has to be considered. The patient would need to inform their GP or anticoagulation clinic of the planned surgery and to plan whether adjustment of the dose or even stopping the warfarin is required. It may be considered unsafe to change the warfarin dose as it may place the patient at risk. To stress the point, the individual circumstances of each patient must be considered so that risk can be identified. Back to TopIs it safe for someone with cardiomyopathy to have a flu vaccine injection ?It is safe for people with cardiomyopathy to receive the flu vaccine. Back to TopA Doppler is a form of ultrasound where information can be obtained on flowing blood in arteries and veins. The information can be represented as Colour Doppler - where the blood flow is shown as blue and red, or Duplex - where velocity of blood flow can be measured. So you will be having an echo looking at the structure, size and function of the heart and the Doppler imaging is looking at the blood flow through the heart. This can provide information about the function of the heart muscle and valves. Back to TopCan exposure to diesel fumes cause cardiomyopathy ?It is not thought that diesel fumes have any action directly on the heart to cause cardiomyopathy. It is believed that workers exposed to high concentrations of diesel fumes are likely to have some sort of skin or lung reaction. Back to TopI have been prescribed a statin drug to reduce my cholesterol. I see in the leaflet supplied with the tablets it should not be taken if you have a myopathy. Does this mean cardiomyopathy ?Myopathy means a condition affecting the muscle. It is known statin can worsen symptoms in people who have such conditions. However, this applies to skeletal muscle not heart muscle. Statins are considered safe for people with cardiomyopathy. Back to TopI have an ICD and am planning to go to a theme park with my family. Is it safe for me to go on rollercoaster rides ?This is a difficult one to answer with certainty. Mainly, it comes down to the individual being aware of any risks and making an informed decision about taking part in activities. There is a potential risk that the increased g-forces, and often excessive buffeting which can be experienced on rollercoaster rides, could cause damage to the lead connecting the ICD to your heart. The restraining equipment may also cause some discomfort at the ICD site. This is certainly not something that is advisable in the first three months after insertion of the ICD. Back to TopA Tilt test is sometimes used to identify the cause of fainting in some patients. The patient lies on a couch and is attached to a heart monitor and blood pressure monitor. The table is then tilted to head-up position at about 60 degrees for 30-60 minutes. In some people this provokes dizziness and/or fainting. By monitoring the heart rate and blood pressure the correct treatment can be identified. What is the advice on flying if you have cardiomyopathy ? Sensible points to consider are :
My DCM has improved significantly since my last appointment. Can I stop taking tablets soon ?It is important to recognise that the improvement has been achieved as a result of the medical therapy. To maintain this improvement you will need to remain on the drugs. It is possible some drugs, particularly diuretics, can gradually be withdrawn or the dosage reduced. However, it is likely you will have to remain on medication. I was found to have DCM during my last pregnancy. Would it be advisable to have another baby ? Generally this would not be advisable as pregnancy can exacerbate the underlying cardiomyopathy, and the drugs used to treat DCM may affect the baby. You would need to have a detailed discussion with your cardiologist so you can fully understand the risks which would apply in your particular case. If you did decide to go ahead it is important that your cardiologist monitors you closely during the pregnancy. My doctor talked about 'SAM' when discussing my echo - what is it ? Systolic Anterior Movement - SAM This is related to the amount of obstruction to the outflow of the heart your HCM is causing. In some cases of HCM, with obstruction, the leaflets of the mitral valve - the valve separating the left atrium and ventricle - move in an abnormal manner and move across touching the wall between the two ventricles (the septum) when the heart contracts.
If I have an ICD can I still drive my car ? The main question to consider is always the underlying disease and the reason why the ICD was implanted in the first place. It's important to remember that it's not your ICD that restricts your driving. The restrictions are those dictated by your underlying condition and risk profile. Regulations are published by the DVLA. They need to be taken as a guide and you should check the position in relation to your own case. The regulations are being constantly updated. If you have had a cardiac arrest and a defibrillator fitted, you must tell the DVLA. You can start driving after six months as long as the device has not been activated in that period and you are not prone to fainting. You will have to stop driving for one month each time the setting on your ICD is adjusted or if your anti-arrhythmic medication is altered. One week off driving is required after reinsertion of a defibrillator box, provided that the settings remain unchanged. If you have not had a cardiac arrest and your ICD is being fitted as a precaution, you need not tell the DVLA but you should not drive again for a month. Having an ICD does bar you from driving lorries or public service vehicles such as buses, even if it is only fitted as a precaution. For further details, call the DVLA on 0870 600 0301 or go to www.dvla.gov.uk/welcome.htm the particular definition page you might want to read is - http://www.dvla.gov.uk/at_a_glance/ch2_cardiovascular.htm#icd
How do I arrange for gene testing ?
At present there are very limited clinical services available for genetic testing in the UK. The majority of genetic testing is undertaken as part of research programmes. This work seems to identify known and new genetic mutations contributing to the development of cardiomyopathy. The CMA is campaigning for greater availability of genetic services In hypertrophic cardiomyopathy (HCM) does the heart muscle continue to thicken as you get older ?
No, the changes to the muscle usually occur during the early teens to the early twenties. The thickening is not a progressive process that continues throughout life. Some people are affected by a type of HCM that occurs during the later years of life. This is know as 'late onset' HCM.
Can a parent carry an HCM gene mutation, not have any symptoms, and pass it on to their children ?
Uncommonly a gene mutation can be inherited by an individual and not produce signs and symptoms of HCM. This is known as 'non-penetrance'. In situations such as this, the gene mutation can still be passed on to the individuals children.
I have recently been told my dilated cardiomyopathy (DCM) is cured. Can this happen ?
In general DCM is not curable and you should not stop taking your medication without consulting your specialist. However, the function of the heart can return to normal or near normal in some cases of DCM caused by inflammation in the heart or when it occurs following pregnancy (peripartum cardiomyopathy). In such cases, some medications can be reduced or discontinued.
I take warfarin and have to have blood tests to check my INR. What does INR stand for ?
International Normalised Ratio It is a measurement of the time the blood takes to clot. People taking warfarin have their dosage adjusted according to the INR reading of their blood.
The clinical term for this is 'sinus arrythmia'. It is due to the influence of respiration on the vagus nerve, which acts to control the heart rate. This is very common and entirely normal.
What is the danger for people with pacemekers from magnets in devices such as headphones, toys, jewellery and computer hard drives ?Magnets or electronic devices, such as mobile phones, should not be placed directly on the skin over a pacemaker, but in general there should be no problem with everyday use of headphones, computers and other domestic electronic equipment. If you ever have any doubts about a particular device, your local pacemaker clinic should be able to provide you with further advice. I have been told I have HCM without hypertrophy - what is this ? Most people with hypertrophic cardiomyopathy have an underlying genetic abnormality that has caused thickening of the heart muscle. Relatives of individuals who have definite hypertrophic cardiomyopathy and carry the same genetic abnormality can have minor changes on their electrocardiogram without substantial thickening of the heart muscle. Doctors sometimes refer to this as "HCM without hypertrophy". This description may also be used to describe relatives in whom the genetic abnormality has been identified yet they have completely normal electrocardiograms and echo-cardiograms. What is spongiform dilated cardiomyopathy ? This is also known as myocardial non-compaction, a condition where areas of the heart muscle appear spongy or honeycombed. It was first recognised in 1932, the first diagnosis using echocardiogram being made in 1984. Deep channels, known as trabeculations, are present in the heart muscle. The condition mainly affects the left ventricle but can also affect the right side of the heart. The treatment is the same as for other forms of dilated cardiomyopathy. I have an implanted defibrillator (ICD) and have been told I need a DFT test - What is this ? DFT stands for defibrillator function test. This is a very simple, safe procedure done under sedation to check the ICD functions correctly. You will be admitted to hospital as a day case and discharged when the effect of the sedation has worn off a couple of hours after the procedure. How long does an ICD battery last ? Technology is advancing and the battery life of an ICD is now up to seven year. It does depend on the level of activity of the device and the model. Rarely do ICDs need replacing due to a malfunction. It is, however, important to attend the ICD clinic regularly for checks to be made. It is very unlikely that any of the drugs that are used to treat dilated cardiomyopathy will cause weight gain. An increase in weight is much more likely to relate to dietary factors and a lack of physical activity. What does left bundle branch block mean ? This term refers to a particular pattern in an electrocardiogram. It is quite common in some forms of cardiomyopathy and is caused by sluggish passage of electrical impulses through the left side of the heart. IN general, it does not need specific therapy, but its presence may influence some treatment decisions - for example, the decision to implant a pacemaker in someone with severe symptoms caused by dilated cardiomyopathy. I have an internal defibrillator (ICD) will I be able to have a tattoo ? It depends where you want the tattoo! as the equipment used to draw a tattoo could theoretically interfere with the ICD, discuss the details with your specialist Tinnitus is a recognised side effect of frusemide and other loop-diuretics when taken in high doses. Changing to another loop diuretic may help, but a far more effective alternative may be to reduce the dose and combining it with a different type of diuretic, for example a thiazide. Splitting the dose. taking some in the morning and some at midday, may also help. Can hypertrophic cardiomyopathy (HCM) cause heart failure ? The term heart failure refers to the development of sign and symptoms of heart dysfunction. These include breathlessness, fatigue, and fluid retention. HCM can cause such symptoms by increasing the stiffness of the heart muscle and less commonly by impairing its pumping function. Fortunately, this complication occurs in only a minority of individuals. This refers to the jugular venous pulse. The jugular veins return blood from the head and neck to the right side of the heart. if the pressure in the heart is raised then the pulse becomes more evident. By examining the JVP, doctors can asses right heart function and fluid balance in people with heart conditions. I have dilated cardiomyopathy (DCM) that seems to be well controlled. Can I go deep sea diving ? Diving, whether in a swimming pool or in open water, requires general physical fitness and good health. While the risks of deep sea diving for someone with DCM and no symptoms are probably very small, I would suggest following advise set out by the British Sub-Aqua Club (BSAC), that is available on-line at www.bsac.com To my knowledge the club has not produced any specific guidelines for cardiomyopathy, but it does have a network of medical advisors who are specialists in the effects of diving on the cardiovascular system. What does 'fractional shortening' mean ? Fractional shortening is a rough measure of the performance of the pumping chambers (ventricles) derived from echocardiography. In general we advise against the use of GTN as it can precipitate or exacerbate obstruction to the outflow of the heart, a common problem in people with hypertrophic cardiomyopathy. Can people with cardiomyopathy donate blood ? There is no problem with donating blood for the majority of people with cardiomyopathy. The only possible exception would be an infected cause for the cardiomyopathy. These are extra beats that arise in either the atria or ventricles of the heart. They often cause no symptoms at all, but can result in a sensation of thumps, pauses or jumps in the heart rhythm - referred to as palpitations. Most hay fever remedies contain antihistamines. In general, there should not be major interactions with either ACE inhibitors or beta blockers, the exception being sotalol which can interact with some antihistamines to cause heart rhythm problems. Caution should also be exerted if you have a history of heart rhythm problems. Alternatives include remedies that are administered directly into the nose as these generally have few side effects elsewhere in the body. You should always discuss potential interactions with a pharmacist Can cardiomyopathies cause visual symptoms or impairments ?Most cardiomyopathies do not affect the eyes. Some rare exceptions include conditions that affect the nervous system or the bodys' metabolism, such as Fabry disease and Danon disease, as well as the heart. Back to TopWhat has to be considered when a cardiomyopathy patient needs a general anaesthetic ?This is a very complex area. In general, most people with a cardiomtyopathy can tolerate a general anaesthetic. Special precautions may be necessary in people with sever impairment of heart function or uncontrolled heart rhythm problems. In some cases, we recommend that essential operations are supervised by an anaesthetist with a particular interest in heart conditions. Back to TopBiventriculat Pacemaker - Medication and BenefitIf the biventricular pacemaker imrpoves heart function, it might be possible to reduce and possibly stop diuretics (water tablets). In most circumstances, treatment with beta blockers and ACE inhibitors would continue. Many patients notice an immediate improvement in their symptoms, but the improvement in heart function may take a number of weeks or even months. Back to TopHCM and scuba divingWe are always very cautious about advice on diving. Advice is tailored to the severity of the cardiomyopathy, symptoms and the risk of developing a heart rhythm disturbance while underwater. Back to TopCan HCM cause kidney failureHCM itself cannot cause kidley failure. Some conditions can affect both the heart and kidneys (for example Fabry disease). In some circumstances, drug therapy may also affect kidney function - i.e. excessive use of diruetics. Back to TopDo hypertrophic cardiomyopathy HCM patients ever require a heart transplant ?A very small number of people with HCM develop severe impairment of their heart function that requires heart transplant. Back to TopAre there any new treatments or trials in hypertrophic cardiomyopathy (HCM) (Answer as a March 2010)Several small trials of drugs that might prevent or slow disease progression in people with established HCM are underway or are planned. We are aware of only one small study in the USA, using a drug called diltiazem that is designed to prevent HCM from developing in people with the underlying genetic abnormality but no detectable heart disease. This is likely to be a very difficult thing to do. Back to TopWhy do you get chest pain with dilated cardiomyopathy (DCM)Chest pain is a relatively common symptom in DCM. The mechanism is unknown but it may relate to abnormalities in the small blood vessels in the heart muscle. Back to TopWhat is Apical pacing and why is it done ?When a pacemaker is inserted, one of the pacing wires (also known as a lead or electrode) is usually positioned at the tip or 'apex' of the right ventricle. In most cases this is done simply because it provides a stable position for the wire. Back to TopCan someone with ARVC (arrhythmogenci right ventricular cardiomyopathy) and an internal defibrillator (ICD) go skiing ?Most cardiologists would be a little reluctant to approve this activity. This is partly because of the risk of arrhythmia but also because of the risk of damaging the ICD during a fall. Inevitably, advise is always tailored to the individual and so it's recommended you discuss this with your heart specialist. Back to Top
Acknowledgment : Cardiomyopathy Association news magazines
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