How do sufferers cope with deadly diagnoses?

How incurable patients deal with their diagnoses?

06/26/2014

Many people in Germany suffer from an incurable, potentially fatal disease. The diagnosis is usually a shock for those affected and in addition to the actual illness often mental symptoms such as panic attacks, anxiety disorders or depression are added. Similarly, Martina Kopera, whose case the news agency „dpa“ in a recent communication. But she decided to fight - so far with success.

Initially, Martina Kopera suffered from mild respiratory distress, which eventually became worse and worse, until the now-46-year-old Berliner finally barely had any air and was admitted to the emergency room. The ICU was followed by the devastating diagnosis: Lymphangioleiomyomatosis LAM for short. This very rare disease of the lung causes changes in the lung tissue, which in turn lead to an impairment of oxygen uptake. The course is insidious. Often mild respiratory problems and coughing are observed over years and sometimes misdiagnosed as asthma, before the air deficiency becomes so acute in the further course that it assumes life-threatening proportions.

After diagnosis, patients fall into a mental hole
Every year, thousands of people in Germany are confronted with diagnoses that completely upset their lives. Cancers are still among the more common diseases here. In many cases, those affected have never heard of their condition before. After the diagnosis, they fall into a hole, which „initially a completely normal reaction“ be, quotes the news agency „dpa“ the cancer doctor and psychotherapist at the Klinikum Großhadern of the University of Munich, Pia Heußner. Crucial is then, „how those affected deal with the new situation“, Heussner continues. She is also a board member of the Association for Psycho-oncology in the German Cancer Society and often deals with the psychological effects of such diseases.

Live or die?
After the diagnosis of a very serious or incurable illness, the persons concerned should, according to the expert, first clarify for themselves what is particularly important to them. Here, for example, the question may arise as to whether the right doctor has been chosen or whether it is desired to accompany persons who are related to the visit to the doctor. Patients also need to develop a strategy on how to deal with the disease themselves. „Either fighting or dying, I said that in 2010, when the disease was diagnosed“, quotes the „dpa“ Martina Kopera. The mother of three emphasized further: „I want to live.“ Since then four years have passed. Although the Berliner can now only wheelchair in front of the door and she depends on the supply of oxygen, but „the four years that I've lived since the outbreak of my illness are four years in the making“, so the conclusion of Kopera.

Depression, panic attacks and fears of death
However, the 46-year-old had to fight according to their own statement after the diagnosis with mental health problems. Especially in the first year after the outbreak she often wondered „why me?“ and also temporarily developed depression and panic attacks. In the second year it was initially much better, before they again „mentally downright in a hole“ fell. Regular fears of death have been the reason for several days of hospital treatment. To date, the patient claims to be not free from such attacks. However, Kopera has learned to focus on the positive things. She draws energy above all from her family. „My children give me a lot of strength“, emphasized the mother of three. Her youngest daughter is seven years old and likes to snuggle with her mom. The loving interaction in the family strengthens me, so Kopera on. However, she is also haunted by phases in which everything seems to get out of hand. In such psychic grueling phases, she gets professional help from a psychologist or pastor.

Social networks especially important
The oncologist Pia Heußner also emphasized the importance of a stable social network for the patients concerned. Family members and good friends are extremely important for the sufferers to be mentally caught. In addition, those affected could turn to a variety of counseling centers and self-help organizations. In the self-help organizations offer the sick a possibility of exchange among themselves. They can raise each other in discussion groups and exchange information about their illness, explained Heußner. In addition, if necessary for verbal attention in acute situations, there would be telephone counseling or psychiatric crisis telephone services available.

Clarify care and accompaniment at the end of life
Last but not least, patients have to consider incurable, deadly diseases, as they imagine their care and support at the end of life, the reports „dpa“ citing Benno Bolze from the German Hospice and Palliative Association. Bolze advises those affected to seek advice as early as possible. This provides security for the time of serious or incurable disease. Contact details of the hospice and palliative services can be found on the Internet and in the telephone book. In general, the principle applies here „Outpatient in front of inpatient“, quotes the „dpa“ the experts from the German Hospice and Palliative Association. Bolze added that „only when home care is no longer possible and the patient wishes to be admitted to a inpatient hospice“ successes.

Hope for a donor lung
Despite her severe illness, Martina Kopera continues to live in her old home together with her husband and children. She has not given up on her fight and hopes for a lung transplant. This is the only promising option in the advanced stage of the disease. The likelihood of LAM recurring after a transplant is considered to be extremely low. Martina Kopera explained that although they had already talked about dying in the family and „we all have to go someday“, but in any case she would like to spend a few more years with her husband and children. Therefore, wish „I feel so much that a suitable donor lung is found for me“, stressed Kopera. (Fp)