Patient with moderate, progressive IPF
Living with IPF
What were the first signs that there was a problem?
Well, I was in the mountains, where I often hike and I went for a little run. This run, relatively speaking, exhausted me a bit and I felt a band of very strong pain across my chest. This worried me and when I returned from my holiday I went to see my GP, as I feared it was a heart problem.
What tests were conducted?
This appointment was conducted from a cardiac point of view, given that it was a chest pain. The cardiologist found absolutely nothing wrong with my heart. I had an electrocardiogram, I did stress tests, so from a 'heart' point of view I practically had no problems. After that the GP who had been monitoring me for a long time sent me to a pulmonologist. At the appointment the pulmonologist found I had some rales, some crackles. So after that, I had X-rays, a scan, yet still with the auscultation there were concerns about this strange rale. The pulmonologist sent me to Lyon and arranged my appointment at the Louis Pradel Hospital. They took a biopsy from me to see what I had. This was done on the spot in Lyon. The biopsy revealed IPF which left me a little surprised, not knowing what it was at the time.
How did you feel when you were informed of the diagnosis?
Being informed of the illness can be very shocking for the patient. Perhaps because they are going to tell you that perhaps you do not have a very long life expectancy, that this illness can progress very quickly, it can last a long time or it can be very short. From the patient side of things, there needs to be a lot of tact to announce these diagnoses.
How has breathlessness impacted your life?
The difficulty which I put at the top of the list is stairs. They're kind of my bête noire. Two flights, that's the limit; three flights that becomes almost unbearable.
How has IPF changed your relationships?
I have had a lot of help from my wife. I think that when you are being informed of serious illness, having a spouse present really helps. Someone who can ask questions and can also chat a bit with the doctor.
How do others react when you discuss IPF?
Currently people know very little about this illness. I think the term 'idiopathic' alone shocks them. When you tell them that it is something unknown, that you don't know where it comes from.