In 1998, after three years of travelling from one doctor to the next, we finally got the diagnosis ‘primary pulmonary hypertension‘ for our then three-year-old daughter. My first reaction was one of relief, at last knowing for sure what my wife had felt from the very beginning (mothers always know how their children are doing) – that something was wrong with my daughter. Up to that point, my wife was branded as being hysterical, impatient and hypochondriac.
Naturally, my next question was about therapies that might help to cure my daughter. When the doctor told me in front of my then 11-year-old son: “I’m sorry, but there is no treatment, your daughter will not live to see the second decade of her life”, I felt that the floor I was standing on became as shaky as my knees and I was in complete shock. My son said to me: “Does Maleen have to die now?” and started to cry. At that moment, I was at a complete loss, utterly desperate.
This state of shock was followed by a time of lamentation. I was sure to be the most miserable person on earth and constantly pictured myself carrying a dying child in my arms, asking what I had done wrong to be punished that way. Totally distressed, until my elderly grandmother brought me back to life by telling me: “Don’t cry before you get hit!”, and my daughter asked me: “What’s wrong with me, everybody has such a sad look on their face when they see me?”
Gerry is from Austria and his daughter has PH. Here he talks about the topic "How long did it take to get a correct diagnosis? " Please feel free to share the video to create awareness for PH.Gerry's daughter was probably born with PH. Her mother knew something was wrong when she was breastfeeding Maleen, but it still took three years to get the correct diagnosis. Maleen is today 21 years old!#TimeMatters #pulmonaryhypertension #ph #phaeurope
Posted by Pulmonary Hypertension Association Europe on Thursday, June 29, 2017
So I made up my mind not to be sad any more, I started to fight and found a PH child care centre in New York, sold my travel agency and left with my family. Bad thoughts were sent away and banished. From that point, we had fun and enjoyed our life together again and every minute of it, whenever possible.
Maleen will be 21 on May 24, she is a student at Webster University in Vienna and has written a book about her unusual life. After she had been diagnosed, she did not have to stay in hospital much more frequently than other children, she handles her situation ( IV therapy) very well and I can say that we had really great 17 years since the diagnosis, which would have been even more care-free if we had relied on our strength, medical progress and God’s help from the very start.
If you wish to talk to me personally, please give me a call on 0664/2288888.