How it started…

For over a year I have been suffering from vague tightness. It is difficult to say when it does and doesn’t bother me, what type of tightness it is and whether there is a certain trigger. Because it has been getting worse in recent months, I make an appointment with the general practitioner.

The GP does not hear anything strange about my lungs, but she wants me to have a lung function test to see if it may be asthma. If that does not work out, then I have to see a pulmonologist because breathlessness is not okay. A few days later, the practice nurse takes the lung function test, spirometry. The curve I blow is abnormal, a strange flattening instead of a nice peak. Because she has never seen this before, she wants to advise the GP to refer me to a pulmonologist.

Because I would like to know what the abnormal curve could mean, I am looking for information about spirometry curves. Soon I found that this curve fits an airway obstruction. I also find information about tumors, but I ignore that. An obstruction sounds plausible, but a tumor is very dramatic.

The GP gives me the choice of which hospital I would like to go to, I choose the hospital with the shortest waiting time. A week or two later I can go to the pulmonologist. He hears my story and wants me to do another spirometry and then a histamine challenge test. He thinks it is asthma.

The spirometry gives the same flattened curve. The person who takes the test calls a colleague to see if it is going well. It is a curve they have never seen before. They still think of the wrong blowing technique, but after a several tries the outcome stays the same. A third colleague is called in, but he also does not know. I have go back to the pulmonologist and then he should indicate what the next steps are. The histamine challenge test is not reliable with this curve.

The pulmonologist still thinks it is asthma and that I have the wrong blowing technique. He asks a colleague who has a lot of experience with the spirometry curves. Fortunately, she indicates to have a CT scan made to be sure, to rule out that there is not an obstruction that causes the abnormal curve.

We are now a month later, my breathing is getting worse but I still don't know what's going on.

Monday March 2

Today I get the results of the CT scan. Despite the information I have found about the abnormal curve, I don't think at all that it might be useful to take someone to the appointment.

The pulmonologist starts the conversation with a question referring to something we talked about in a previous appointment. I think it is a strange question, after all, I come for the result of the CT scan, and I am immediately on my guard. When he continues to speak after my answer I notice a huge change in his voice. A feeling goes through my whole body and also B. feels it, he immediately starts crying.

There is a tumor in my trachea / trachea. They do not know exactly what it is, but it is clear: there is something that doesn’t belong there.

Given the location of the tumor, the pulmonologist wants to refer me to a university hospital. He tried to contact a lung specialist at the Leiden University Medical Center (LUMC) and one at the VU University Amsterdam (VU). As soon as he has spoken to one of them, he will contact me.

Because I came alone to the appointment, the pulmonologist asks me if my husband can come to the hospital so that he can also inform him. Because I have to wait until M. is there and I am quite shocked, they let me wait in a separate room instead of in the waiting room. Fortunately, M. is quickly in the hospital and we have a conversation with the pulmonologist. To be able to look back later, I ask if I can take a few photos of the CT scan.

When we drive home I am quite out of balance. A tumor in my trachea, how are we going to tell the children (13 and 11) and what are we going to tell them because we know so little. Despite the bad news, there is also a kind of relief, there is really something gives me a hard tome breathing. And somewhere a little bit proud, after all, after the first lung function test I had already found that the abnormal curve fits with an obstruction in the airways and that is clearly the case.