Michella: Truncus Arteriosus, 31
Hi,
I'm Michella from the Netherlands and live in a village nearby Utrecht. I’m born at May 30 in 1987 with Truncus Arteriosus 1 and ASD. My parents didn't know about my heart condition. The obstetrician has heard something during pregnancy, but after a second opinion in the hospital, they said that I was a healthy little girl. I'm born in the hospital and the obstetrician did want that a pediatrician should listen to my heart either. And still I was a healthy baby girl.
In the few months after my birth I did sleep a lot (my parents has to wake me for nurture), and when I got nurtured, my head was sweaty. Two months after my birth my weight gain was a 100 gram. Finally they did send me to the hospital and after a first check, they send me to cardiology. It was 1987 and children’s heart surgery was just started in The Netherlands. The hospital was a children’s hospital in Utrecht. My heart condition would be too bad to get a surgery. After three weeks in hospital my parents could convince the doctors to get my a surgery. On August 26, I've got my first open heart surgery, a full repair and I did survive. I'm so great full for the chance they gave me.
The heart defect I'm born with means that my aorta and pulmonary artery had still a connection after birth (one artery for body and lungs) and there is a hole between the ventricles (VSD). I've got also an ASD (hole between the atriums).
My childhood wasn't very different of healthy kids. I had a few little physical restrictions, but that was very manageable. I did go to a regular elementary school. I could do physical activities and I had a great time at korfball (a Dutch sport). But during the years I had to sacrifice energy. With korfball I could chance with another player when I needed, and with school swimming or gymnastics I had to sit down to rest sometimes. In 1999 I've got a cardiac catheterization for the low energy level, but everything was fine and the tiredness is a part of the TA.
I went to regular secondary vocational education, but to get there by bike was too heavy, even cycling with an e-bike was too heavy. So we made a request for taxi transport, the rest of my school/study years I went to school by taxi.
In 2000/2001 I did got physical and mental complaints: Losing weight, dizziness, nausea, amenorrhea, depression, anxiety etc. I was 100% sure my heart give this complaints, but the doctors told me that it was between my ears. I've got a lot of blood tests, but the results came back normal. I've last found an old ECG result: date November 2 2000, high 157cm, weight 37 kilo (81lb). So bad was my condition. In January 2000 my mom did spoken to the surgeon of my first operation, he recognize my symptoms and act quickly. 10 Days later I was on the operation table for open heart surgery two. That time I've got a mechanical valve in my aorta. After a short week in hospital, I was back home. Since then I have to use anticoagulants (acenocoumarin), that is still my only medication.
But, how young I was, I had to think about which valve I did want (a donor or a mechanical). A donor has to be replace in the future and a disadvantage was that he has to be in my aorta (probably a fast wear and a replace in the next few years) or a mechanical valve with acenocoumarin. But with the medication I'm not allowed to get pregnant, because it is dangerous for the fetus. When I've found a partner and we want a child, I need other anticoagulation. When I was 13 years old I had to think about getting children. I choose the mechanical valve, because of his lifespan and that they told me that I still could have my own kids. I never regret it.
In the hospital the nurses noticed my negative and depressed behavior. They send me to a children's psychologist. He find out I had a Anxiety Disorder (for getting dizzy and that I didn't trust my body). With EMDR (Eye Movement Desensitization and Reprocessing) he helps to processing all my bad experiences. When I started I didn't dare to go to something on my own (even to the neighbors, or something nearby), when I finished I had my freedom back. Every day I'm great full for this opportunity, I have still the profits. I go on my E-bike to the supermarket/the village and with the public transport I travel to friends etc. Even a day out I'll do on my own. But this period was the hardest of my life. It was so hard to survive. I've ask my mom several times what the best way to suicide myself was. I was thirteen years old, still a little girl who also did wants to plays with barbies and dolls, how contradictory.
Every day I'm thank full that there wasn't google for inspiration, and the nearest train was to far for my physical condition and anxiety.
In fall 2004 I did got physical complaints again. I did recognize them quick and the doctors also. My homograft in the pulmonary artery did has to be replaced. In June 2005, I've got my third open heart surgery. Since then am I stabile.
Since I'm 18 years old, I get a benefit for young disabled.
After doing several regular studies, I've did started in 2012 with Foot reflexology. Since 2016 I've got my own practice, and I'm proud of it.
Also in 2012 I've leave my parental house, I've got a social housing and live on my own. When I was a kid, I've worried about this, I didn't know if it was possible for me. But with my domestic help (2,5 hours a week) is it perfect.
My physical condition is never became back on the level it was when I was a kid (although was it always lower than healthy kids). For long distances I've got a wheelchair and a small/travel scoot mobile. My E-bike is also an amenity.
Despite I've got my life back on track, have my house, have a cat and 2 guinea pigs, my practice (not my total income, just some extras. I still got the benefit for young disabled) etc. I still miss one thing in my life, a partner. Because of my mental and physical condition, my life existed by my therapy and school. I didn't had energy for a social life when I was a teenager/adolescent. So I don't have experiences as well, and that makes me unsure. I've still weird behavior from the period 2000/2001. It looks like autism (structures and patterns), but for me it was a method to create safety (outside of myself, because I couldn't trust my body). In my studies I've got lessons about attachment by children. And a Dutch foundation (Free translate: Foundation Heartchild/Stichting Hartekind) finances research to CHD, survive and quality of live. One of the researches they finance is about EMDR therapy by (pre verbal) traumas. It looks like that attachment problems belong to (pre verbal) trauma's. And that I've a problem in the attachment as well. In the '90s, when I grew up, was I just a weird kid who freaking out when I did lose my mom in a public area like the supermarket. And still I've got the panic feelings when someone’s loses my own attention. But I made it livable, but I've found out that when I'm dating and I like a guy, I've a struggle with my attachment. But after almost 31 years, I felt in love for the first time in my life. Unfortunately, the guy not at me (but I wasn't at my best in my separation anxiety, belongs to the attachment problems). But I don't give up, someday I'll found my life partner. In the meantime I do like to cook/bake, walking (max. 5-7 kilometers/3-4 mile), my pets (cat and guinea pigs), read a book or magazine, visiting theatre, museums and Fantasy events in costume, spend time with friends and family, volunteer by several organizations, go on city trip/holiday etc.
It is important that I planned everything well. After a day out, or a late evening, I have to plan the next day off, so I could rest. I always say that I'm a or/or person, not a and/and. Sometimes I hate it, that I always have to choose. Mostly I called my mom then and get angry and sad on the situation. But I don't want to lose my CHD, it makes me how I am and I'm proud of it.
A lot of friends do have CHD as well. I got to known them in the '00s, when the Dutch Heart foundation (Nederlandse Hartstichting), still organized holidays for people with CHD. Unfortunately they stopped with the holidays a few years ago.
Despite of the great friends I've met on the holidays, I being confronted with the other side of CHD, not everyone survives. Since 2008 I've lost eight friends and a lot of children and young adults I've met on the holidays are passed away also.
What Stephanie Romer, creator of CHD legacy, says about the unspoken connection was there on the vacations too. I'm glad I can join an international CHD family as well like CHD Legacy.
Lots of love,
Michella