Breathlessness, swelling of the feet, fatigue: Cardiac Amyloidosis - Réseau Amylose Site Patient

Breathlessness, swelling of the feet, fatigue: Cardiac Amyloidosis

Cardiopathie amyloïde

Breathlessness, swelling of the feet, fatigue: signs of Cardiac Amyloidosis

Cardiac amyloidosis is caused by a build-up of protein deposits in the heart. Deposits can build up in different parts of the heart, for example proteins can accumulate in the heart muscle, which can impair its ability to act as a pump, leading to heart failure and resulting in a range of symptoms, such as fatigue, breathlessness due to physical exertion and then when resting, water retention in the legs and arrhythmia. Deposits can also build up in the nerves, again leading to arrhythmia.

Symptoms common to these three types of amyloidosis are:

Breathlessness, fatigue, weight gain and water retention (oedemas in the legs) are often the first symptoms of cardiac amyloidosis. These symptoms are very common and can also be indicators of many other heart diseases, not just cardiac amyloidosis. We asked these three patients to describe their common symptoms, as well as the treatment they received for their type of amyloidosis: AL, Hereditary TTR and ‘wild type’ TTR.

This video shows 3 patients that were treated by the Mondor Amyloidosis Network and the Referral Centre for Cardiac Amyloidosis as they explain the course of their treatment and experience to Prof Thibaud Damy.

Conduction disorders (due to damage in the heart’s nerve fibres) can result in faintness and sometimes even loss of consciousness, which often means a pacemaker is required.

In the cardiological examination, the cardiologist will have to assess both the damage to the electrical conduction and heart-rate with either an electrocardiogram (ECG) or a Holter monitor. Electrophysiological invasive procedures using a catheter are often necessary. Damage to the heart muscle can be assessed with an echocardiograph and/or a heart MRI. The MRI measures the extent of the amyloid deposition and the echocardiograph assesses the deposits’ impact on the heart’s function.

Performing a heart biopsy might also be necessary. This is carried out using a small catheter, equipped with a microtome, which is then inserted into a vein in either the neck or the groin whilst the patient is under local anaesthetic. The doctor then removes a millimetre of myocardial tissue. This procedure is not painful.

Prof Thibaud DAMY

Cardiac amyloidosis: Why think about it?