Living with dilated
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.
and body weight
use of medicines
Recommended book and website
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from patient to patient
i.e. mail to webmaster Leo Kuijpers
At the age of 46, the author
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
exercise and proper rest
Proper diet and proper
- Take care for a proper daily
- 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).
- Light handicraft involving the total body
- 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
- 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).
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
use of medicines
- 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
- 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
- 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
- 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.
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,
- 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.
control of a few important parameters
- Take the correct doses of
medicines on time (use special medicine memory
- Ask your medical adviser how they
- Read the packing leaflets.
- Know and learn to recognise side
- Vaccination against the flue each
- Make notes of your particular body
experiences daily (also of help for your next
- Note your weight daily (in the
morning, undressed, after toilet and before
- 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
- 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
- Let your family, colleges,
neighbours, etc, know that you carry this
Recommended book and website
- 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
- ask your companion-patients and your medical
doctors for information.
- Accept the reality of your
- Conquer your fears and feelings of
- 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
- 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
- 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
- Do what you like to do, within the
constrains of your condition.
- Regular rhythm of the day.
- Enjoy every day!
information on heartfailure we recommend to visit the first-rate
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)