Donation-funded youth patient advocate
from Ibbenbüren, born in Münster
“I’m a thorn in the side of many doctors, but if they really want to save me, they have to live with it.”
When I was a little kid, I spent almost two years in the hospital. Later I “grown up” in the hospital, because I spent my entire youth, between 12 and 18, there. I was released shortly after my 18th birthday. I’ve had chronic heart failure since I was 30. I hadn’t taken care of myself and caught the flu. The virus attacked my heart and I developed myocarditis (inflammation of the heart muscle). Recently, my heart’s condition had deteriorated so much that I had a left ventricular assist device (LVAD) implanted. One also speaks casually of an “artificial heart”, although it is not that at all. The course of the disease brought with it many more hospital stays and there were always health problems. I’ve had two strokes, a cerebral hemorrhage, cardiac arrest, multiple infections, lung and kidney failure to name a few. But only one thing counts: I’m still here. In our interviews you will find out how I did it and how you can do it too.
Because of my extensive experience, the accumulated medical knowledge and knowledge of the “medicine” business, I would like to help children and young people. I know how difficult it is to have a disability or chronic illness. I know life in the hospital all too well. I also know what parents, friends and family members are going through. I would like to be an interface to develop coping strategies in joint discussions and at the same time motivate for the future life. I’m fine, I can accept and convey a lot of positive things. Sometimes the first conversation with a sick child or young person works wonders. It is important for those affected to recognize that one should not blindly do everything that a doctor asks for. It is also important to understand and question things. Only then is one able to pay attention, observe and make a correct and considered decision. Only then are you a patient who thinks along with you and attains responsibility towards medical staff.
“Thinking patients are difficult patients and not welcome. But if you think ahead, you increase your chances of surviving.” (Terence Lee)
From patient to patient
Pay attention and think along
Youth Patient Advocate
- ExchangeExchange of experiences from patient to patient
- AdvisoryHow do I become a patient who thinks along with me and what do I have to put up with
- AccompanimentGuidance and help in the hospital jungle, entertainment
- MotivationLife or self-pity - the choice is yours
- DocumentationDocumentation in words, pictures and video
I do the youth patient aid on a voluntary basis. But I depend on your donations. I’m happy if you help too.