I am Mascha. I am 52 years old and I live in the Netherlands. I live with my partner and 25-year-old son. I also have a 22-year-old daughter who lives with her partner and our 1-year-old grandson. I work at a bank as a traffic manager and I am still able to do my work full-time because I work from home. I have COPD GOLD 4 with a lung capacity of about 20%.
In 2011, when I was 38 years old, I was referred to a pulmonologist after I was repeatedly very ill due to respiratory problems. I found out that I already had COPD GOLD 3, which means I had serious damage to the air sacs in my lungs that makes breathing difficult. In the beginning, I was very reluctant to accept the diagnosis and, apart from taking my medication as prescribed and exercising with a physiotherapist, I continued my life as I did before.
In 2016, I ended up in the ICU for the first time because I was stacking which happens when a person takes a new breath before being able to fully exhale the previous one. This causes air to build up in the lungs and can lead to overinflation, which can be dangerous. This ICU admission had a huge impact on me and my family. After that, I discovered that my COPD had progressed to GOLD 4 and it became clear that I needed to take my health seriously.
My pulmonologist then referred me to Dekkerswald, a rehabilitation centre connected to the Radboud Hospital in Nijmegen for patients with lung disease. This was a turning point for me. I was treated there for three months and learned a lot about the disease and how to manage it physically and mentally. Since that time, my COPD has been fairly stable.
In 2022, I was screened to see if I might be suitable for a lung transplant and the outcome was positive. When I am ready, there will be a second screening and, if it is positive, I will be placed on the transplant list. In 2023, I was admitted to the ICU again, but it was brief. The recovery afterwards was quick too because my condition at the time was under control.
A lot has changed in recent years. Even a simple cold can quickly affect my lungs so I limit social contacts outside of my household and make careful choices about what I do. I had always done a lot of volunteer work at the rugby club where my children and partner play, but after my first ICU admission I unfortunately had to give that up. I also need help with many household chores. Thankfully, my employer is very supportive and because I can do my work completely from home, I have not had to give up my job. I like my work and I am happy that I can still add value in this way.
My time in Dekkerswald has taught me a lot about managing COPD. I have learned to pace myself and communicate my limitations clearly to others because COPD is not always visible. People cannot always tell I have the condition, especially since I am not yet dependent on extra oxygen. I really had to get used to this because I find it difficult to be seen as a patient.
I also have a lot of support from my physiotherapist, who helps me to exercise two times a week, and from a dietician when necessary. Because my body uses extra energy, I can easily become underweight and she helps me manage this.
I think it is especially important that the symptoms of COPD are recognised as early as possible by both patients and doctors. Early intervention can help people maintain the best possible quality of life.
I found the parts I listened to very interesting. I think it is really great that this training exists. My own doctor brought this up with me so that I was able to think about this together with my family, without creating a stressful situation. Since it was my first time speaking in English in front of a group, I was quite nervous, but overall, I am reasonably satisfied with how it went.
I think it helps professionals understand how their decisions and actions affect patients and their families. A personal story adds something extra beyond the theory and medical guidelines.
Immerse yourself in your diagnosis as soon as you can, no matter how intense it feels. This helps you access the support that is available. COPD often has an unpredictable course so you never know when help might be needed. Make sure to clearly communicate your limitations to family, friends, and your employer. Accept help and allow yourself to use it whenever necessary.
