Rehabilitation for adults with congenital heart disease

When you have a congenital heart defect it is not always easy to fulfil all your duties and plans, given the limitations you may face. Rehabilitation can help you regain your energy and learn how to cope better when you are next overcome by stress or exhaustion.

Defining your own path

© Benicce

Young adults with congenital heart disease, in particular, often feel an urge to prove themselves. It is not always easy to find your own way, or to keep up with the people around you, and you might want to know what it is like to push the envelope at times.

Young adults with congenital heart disease who have just finished school face many decisions about their future. Not only must they choose a career that interests them, they must also consider the implications of their mental or physical abilities. If you feel overwhelmed by such a situation, don’t worry, you are not the only one. Most young adults with congenital heart disease face the same problem and it is a good idea to seek advice. Inpatient rehabilitation is one option.

Reconciling work, private life and the disease

Older adults who are already working may have passed the stage of career planning and self-discovery, but they still face difficulties: balancing work, a personal life and the demands and limitations of a congenital heart defect is certainly a challenge. Additional stress or an increased workload can often lead to feelings of complete exhaustion. When this happens, adult patients might want to take a break to regain their strength. They too could benefit from inpatient rehabilitation.

Specific care for adult patients with congenital heart disease

The problems faced by patients with congenital heart disease are different to those associated with other diseases, such as coronary heart disease. Therefore it is advisable to find a rehabilitation programme for patients with congenital heart disease. If you are used to dealing with your condition on your own it can be hugely beneficial to share your experiences with people who know exactly what you are talking about.

Example: Programmes for rehabilitation in Germany

The following example gives an overview of inpatient rehabilitation options in Germany. As support of this kind does not exist in any other European countries this article is intended to promote the development of this particular system of rehabilitation at an international level.

Some rehabilitation facilities in Germany offer group treatment programmes for young adults. Older patients, for whom such programmes are not usually available, might apply to undergo rehabilitation with friends who have the same condition. In this case it helps to choose a certain rehabilitation clinic beforehand and name it in your application to make sure you are sent to it.

Special rehabilitation programmes for young adults

Rehabilitation programmes for young adults are designed to help deal with the specific problems faced by patients of this age group. Peer groups in special rehabilitation facilities provide the young adults with the support they need to break away from their families and deal self-dependently with the specific characteristics of their illness. Physicians who are familiar with the specific problems of congenital heart disease can offer the best medical attention. In this context, young adults can test their limits and abilities, but also take a break from their stressful everyday lives. A team of counsellors is also on hand to offer guidance on issues such as career and relationships.

Thus, the rehabilitation programmes for young adults can help prepare them for the next stage of their life.

Inpatient rehabilitation to maintain working capacity

Inpatient rehabilitation can be a good way to help maintain your ‘working capacity’, as it is called in Germany, after a period of stress or exhaustion. It is always wise to choose a programme with patients who have a similar condition to yours as they will face similar  problems and you will be able to share your experiences.

Rehabilitation offers an opportunity to regain strength through physiotherapy sessions tailored to the patient’s individual needs and ability. Older adult patients may also wish to discuss psycho-social or emotional issues and are given the chance to do so if they wish. For life after rehabilitation, patients can learn how to best behave in everyday life to reconcile all tasks with their disease and to keep their energy reserves balanced.

Rehabilitation – how do I get there?

Rehabilitation programmes for patients with congenital heart disease vary from country to country, and so do the means of accessing them. If you are interested in taking part in a rehabilitation measure, please contact your local patient/parent organisation for further information and support.

Have you taken part in a rehabilitation programme? What is the situation in your country? We would like to hear your opinion. Please tell us about your experience here.

Author(s): Eva Niggemeyer
Last updated: 2009-08-17

Do you want to tell us about your experiences? Leave a comment on this article.

Comments on this article

15.02.2010 | Carmen Folgar Loureiro, España
Ayer se cumplieron 43 años que estoy operada de una cardiopatía congénita (Tetralogía de Fallot) quisiera compartir mi experiencia con los que estén o hallan estado en una situación parecida, yo era una niña azul que no caminaba más de cien metros sin tener que agacharme pues no sabía sentarme estaba en cuclillas no podía jugar ni hacer nada, asi estuve hasta los 19 años que me operaron, a partir de ahí mi vida ha sido normal ya no fui jamás la niña azul y acomplejada he sido madre de dos hijos sanos y abuela de gemelas sanas tambien hice y sigo haciendo mi vida normal,pero hemos luchado mucho mis padres y yo para llegar a ser operada , pues en aquella época no había información , pero tuve muchas ganas de vivir y luchar cosa que sigo haciendo ...........gracias
22.06.2011 | Carola Schneider, Deutschland
Habe mit Hilfe ihrer Seite meine Präsentation von der Rehabilitation eines angeborenen Herzfehlers gemacht. Ich muss sagen, dass alles sehr gut verständlich beschrieben ist und dass alles wichtige und interessante drin steht, Vielen Dank für ihre tollen Informationen, ich bin Ihnen sehr dankbar. Mit herzlichen Grüßen Carola Schneider


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