The courage to start a new life at 50 with a rare disease: Rosie Matthysen’s example
At 35 years old, her husband and two babies in tow, Rosie Matthysen quit her banking job, left Brussels and set up home in Rixensart, a green and calm town in Belgium. “I felt so happy, so full of courage and determination. I had lots of projects, new ideas for my house, two babies to care for and I was seriously involved in everything I ever undertook,” recalls Rosie. Of course, there were these occasional visits to the doctor because her heart “was beating like hell”, she had frequent dry cough but the usual diagnosis would be: “too much work Rosie!”
At 45, breathlessness, swollen ankles, hard beating heart and a swelling belly forced Rosie to slow down and cut down on her usual activities. She was growing more and more anxious but her family doctor told her t
hat it was menopause with some depressive symptoms and a cardiologist found absolutely nothing wrong with her heart. For five years, she would go back and forth to her family doctor and cardiologist until one doctor at St Pierre’s hospital who had vaguely heard about Pulmonary Hypertension (PH) decided to follow this track. Primary or unexplained pulmonary hypertension (PPH) is a rare lung disorder in which the blood pressure in the pulmonary artery rises far above normal levels for no apparent reason. “After a week of exams, he diagnosed advanced Primary PH (no determined cause) and referred me to an academic hospital with specialists of the rare disease,” says Rosie.
More was to come yet. “At the specialised centre, they told me that without treatment, I had 2 years to live and with a treatment, it was still a very poor prognosis,” remembers Rosie. The doctors proposed her either a very heavy medicine, Flolan (which is administered by a 24-hrs intravenous), or to enter a new oral treatment study, Beraprost (designated as an orphan drug in 2001; the clinical study was stopped in 2004 and product removed from the European registry of Orphan drugs). Rosie Matthysen embarked on this study in 2000 and held on for four months while her cardiologist kept on increasing the dosage. But eventually, Rosie fell into a coma. She was 50 years old. Whatever her life was before existed no more. “I had teens and they knew that their mother could die at any time. Eventually, the doctors decided I would undergo an atrial septostomy,” recounts Rosie. This procedure widens an existing hole in the wall (septum) between the two upper chambers of the heart (atria). She woke up from her coma a month and a half later. “I came back to life,” says Rosie. After 3 weeks of physiotherapy, Rosie went back home and her own words say it all: “My comeback home has been like a kick-start for a new life!”
“I learned to control the extremely particular and difficult use of Flolan. The ‘simplified life’ allowed me to find time to talk to my friends, catch up with my family and for them too, it was a precious time,” recalls Rosie. When she began to feel better, she set up the Belgian PH patients’ association (HTAP Belgique) with her husband Luc. She got the help of the experts’ team at Hôpital Erasme in Brussels and the sponsoring of a Belgian private electricity server. “It was and is still a very difficult job, PH patients being very feeble and delicate persons, quickly tired and with very heavy treatments. Fortunately, families and friends offered their support and still do.”
The association supports patients and their families, encourages education and awareness of the Belgian public about PH. “With the help of our sponsor, we organise free relaxing events: boat trips, family gatherings which always meet enormous enthusiasm. Leisure is a normal human right, far from being insignificant, essential for mental and physical comfort,” says Rosie. HTAP Belgique participated with another 10 European countries to the creation of the European Alliance of PH National Associations (PHA Europe). PHA Europe is a member of Eurordis.
Today, at Hôpital Erasme in Brussels, patients have now their own “Clinique de l’hypertension pulmonaire” (Pulmonary Hypertension clinic) with cardiologists, nurses, physiotherapists, nutritionists and psychologists. Rosie is now treated with the Remodulin® medecine a more comfortable and reliable treatment (24h:sub cutaneous).
Even if PH has changed her life and made her go through suffering and pain, Rosie has still the enthusiasm and courage that was her motto when she was 35. “I know there is no point thinking about things I can no longer do. I call it ‘positive avoidance’, concentrating on all the fantastic things I still can do. We were, our expert nurse Marie-Thérèse and I, at the European Parliament for the Public Hearing on Rare Diseases in March. I have been diagnosed 8 years ago. For the moment, my PH is stable and I consider myself as a very lucky person. Our kids successfully graduated and have exciting lives. Weddings are approaching. I just wish to have the privilege of becoming a grandmother…”
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Author: Nathacha Appanah
Photo credits: All photos © Matthysen except lungs © C.Natoli