Living with dilated cardiomyopathy
The author imposed a number of rules of life on himself and achieved a livable health, after he was hospitalised in a critical condition with dilated cardiomyopathy.
update of 2010-12-06

Introduction
Exercise and proper rest
Proper diet and body weight
Sensible use of medicines
Self control
Mental attitude
Recommended book and website
React by e-mail from patient to patient
i.e. mail to webmaster Leo Kuijpers

Introduction

At the age of 46, the author (biochemical researcher) was hospitalised in a critical condition with a serious dilated cardiomyopathy and atrium fibrillation, resulting in serious heart failure. The cause of his disease was not found and offered not a mainstay for the therapy. Because, initially, medical treatment yielded insufficient stabilisation and only limited functional improvement, heart transplantation was seriously considered. After some study the author imposed a number of easy and simple rules of life on himself. This web page reports those rules, which possibly have contributed to achieving a reasonable health, despite the poor initial prognosis. The author's aim is to support other cardiomyopathy patients with his experiences, but by no means warrants similar results. Therefore, this website should not be considered as an advice in the strict sense, but as an exchange of experiences between fellow patients. Dilated cardiomyopathy is a serious disease, which needs professional medical treatment and support. Patients should, anyhow, consult their medical doctors for a proper diagnosis and always follow their medical advises.
Leo Kuijpers, Webmaster and cardiomyopathy patient

Right exercise and proper rest

  • Take care for a proper daily sleep.
  • When having a choking and/or congestive feeling in the upper part of the chest in horizontal position when going to sleep, sleep with an elevated head of the bed.
  • When not slept well, have your sleep out.
  • Much, but light, exercise, for at least twice an hour daily, but never hurry, like e.g.:
    - Bicycling (in reasonably flat area's).
    - Walking
    - Light handicraft involving the total body muscular system,
    - Preferably outside.
    When twice an hour of light exercise is still too stressing, the exercise may be spread more or less over the whole day. My doctor defined this as "keep moving". As an "exercise" may be considered anything except, lying or sitting down or standing still.
  • No heavy physical labour:
  • Do not lift heavy weights, push or pull, etc
  • No stooping labour.
  • Take it easy, when going upstairs.
  • Frequent physical and mental rest:
    - Admit your fatigue, take rest, but also have sufficient light exercise.
    - Disrupt activities frequently to rest in a reclining-chair (do rest halfway in between a sitting and horizontal position).
    - Take a "nap" for approx. half an hour after lunch and diner in a reclining chair.
  • Go to bed on time, leave on time (preferably always on the same time).
  • Do not stand still for long periods (like e.g. on receptions).
  • Do not sit down in a forced position for long periods (like e.g. behind the computer).
  • Avoid heat.
  • Do not take too warm a bath or shower (cool down arms and legs with cold water).
  • Do not sunbathe.
  • Keep your pulse below 90/minute during exercise.
  • Do not hurry.
  • Do not suddenly change your position i.e.:
    - Sit down first for a short while, before you slowly lay down. (When you get a congestive feeling in the upper part of your chest, sit up again and lay down more slowly).
    - Do not suddenly stand up from a horizontal position, but sit upright for a while first).
Proper diet and proper weight

The ideal diet, also for healthy people, is that of a diabetic patient (that aims to obtain the energy from digestion of polysaccharides mainly, i.e. from bread, potatoes, beans, etc), combined with a so-called coronary diet. In a coronary diet, use of the wrong cholesterol (LDL) and of saturated fatty acids, like in animal fat, is avoided in favour of the use of multiply unsaturated fatty acids and the good cholesterol (HDL), like in vegetable oils and fatty fish.
  • Reducing overweight is a must.
  • Prepare energy poor, but good tasting, meals.
  • Do not add sugar, use artificial sweeteners.
  • Do not add fat when preparing meals.
  • Do not consume heavy meals, certainly not before going to sleep.
  • Use unsaturated fats instead of saturated e.g.:
    - use diet margarine,
    - use oil for frying,
    - use a small amount of fatty fish daily (e.g. smoked mackerel, as a morsel between meals or on bread; contains very much HDL), but no eel, nor shrimps.
  • Keep a fibrous diet:
    - Intake of fibrous food (barn of wheat) may buffer absorption of water and salt and therefore improve the water/salt balance.
    - one spoon of bran of wheat with each meal,
    - uncooked vegetables with each meal,
    - much fruit, but no fruit juices with added sugar.
  • Use vitamin supplements (heart weakness may decrease absorption, uptake of sufficient vitamin B is essential):
    - Take as a supplement to your meals the daily required amount of multivitamins and trace elements, with dinner, in addition, the daily required doses of the vitamin B complex. (In the Netherlands known as Dagravit Totaal and Davitamon B Complex, respectively).
    - In case of diarrhoea, when antibiotics are used, or alcohol is consumed, vitamin B intake should be considered essential.
    - (The author did not take coenzyme Q10 (ubiquinone), but that does not mean it might not be helpful)*.
  • Keep control of your sodium/potassium balance and water balance:
    - limit the intake of sodium chloride (it is better to prepare your meals without salt and to add table salt while the food is on your dish),
    - daily consumption of potassium containing fruit or vegetables e.g. banana, tomato and potato. When feeling weak, consume some extra tomato juice or fruit juice.
    (WARNING! Patients that use certain "Calcium channel blockers" (e.g. Verapamil) should be advised NOT to consume grapefruit or ingest grapefruit juice. Grapefruit contains certain compounds that lead to an increased bioavailability of these drugs, which can be life threatening. Ask your doctor. Refer to findings of the NIH, Bethesda MD USA, when needed).
  • Unless your cardiologist prescribes limitation of fluid intake: drink ample amounts of water (rather than lemonade, etc), but reduce water intake in the evening.
  • Non-fat milk products with each meal (sufficient magnesium and calcium intake).
  • No alcohol, or at maximum 1 glass of alcohol on a day. (Good reasons exist for absolute abstinence of alcohol. Ask your cardiologist whether this holds true for you too!)
  • No alcohol when it causes a bad sleep, or irregular and/or throbbing heartbeats.
  • If you nevertheless use alcohol: drink one (and never more than one) glass of wine preferably with your diner.
  • When no other objections: normal use of coffee. It may help when feeling weak.
  • Do not smoke.
    ----------------------------------------------
    * Coenzyme Q10 is a vital link in the chain of biochemical transformations that produce energy, also in human heart cells. The human body itself is capable to produce coenzyme Q10 and therefore it is not a vitamin in the true sense. As a mean coenzyme Q10 content is found to be decreased in patients with heart failure. From a biochemical point of view, a lack of coenzyme Q10 may be corrected by taking it orally, typically 100 mg daily. Recent studies indeed indicate that intake of coenzyme Q10 stimulates heart function (and other energy related processes) in cardiomyopathy patients. It is apparently safe, as, so far, no adverse effects were seen. So don't hesitate to ask your doctor about this. Do not take coenzyme Q10 without consulting your doctor first.
Sensible use of medicines
  • Take the correct doses of medicines on time (use special medicine memory boxes).
  • Ask your medical adviser how they work.
  • Read the packing leaflets.
  • Know and learn to recognise side effects.
  • Vaccination against the flue each year.
Self control of a few important parameters
  • Make notes of your particular body experiences daily (also of help for your next consult).
  • Note your weight daily (in the morning, undressed, after toilet and before breakfast).
  • Inform your doctor when you note a sudden increase of >2 kilogram.
  • Measure blood pressure and pulse regularly (simple electronic, well calibrated, devices are available at reasonable costs)
  • Know what phenomena point to emergency: e.g.
  • particular irregular heart rhythm, chest pain, severe weakness, severe choking, etc
  • Carry information about the kind of disease, your medicines, emergency telephone numbers, etc, always with you (e.g. in your wallet)
  • Let your family, colleges, neighbours, etc, know that you carry this emergency information.
Mental attitude
  • Learn how to handle your disease:
    - try to understand the principles of the disease (read and talk about it),
    - try to understand the principles of its treatment.
    - ask your companion-patients and your medical doctors for information.
  • Accept the reality of your disease.
  • Conquer your fears and feelings of uncertainty.
  • Use your bad and good experiences to adapt your behaviour (biofeedback).
  • No hurry, no worry.
  • Eliminate stressing situations or learn how to handle them.
    - recognise signals of "hidden" stress and eliminate.
    - Avoid long-lasting mental efforts e.g. like studying for a duration of several hours, or work at a high level of concentration. Take e.g. a walk in between.
    - Do not worry about things that are not worthwhile to worry about.
    - Say "no", when your environment is too demanding.
    - You are not obliged, or even better not allowed, to do, what you are not able to.
  • Make your social environment understand your situation.
  • Do not accept "coddling interference" of your social environment.
  • Don't ask yourself what obligations you have today, but ask yourself how you feel today and what you can do in accordance.
  • Conquer feelings of guilt:
    - this disease is caused by nature and most likely not by behaviour.
  • A positive attitude.
  • Realise what life still brings you.
  • Do what you like to do, within the constrains of your condition.
  • Regular rhythm of the day.
  • Enjoy every day!
Recommended book and website
  • For elaborate information on heartfailure we recommend to visit the first-rate website http://www.chfpatients.com 

  • A recommended book is "Success with Heart Failure", 3rd Edition, 2002 by Marc Silver (ISBN: 0-7382-0600-8). The author covers just about anything a heart failure patient, who isn't interested in reading medical journals, would want to know in a straightforward, optimistic fashion, and includes information on experimental surgical procedures and medications currently in clinical trials.The webmaster wishes to thank his fellow patient Hank Gross for this recommendation

Contact Leo Kuijpers, webmaster and cardiomyopathy patient

(more about heartfailure in Dutch)