“Seven years ago I noticed an advertisement on TV saying that if you have had a cough for more than three weeks to go and get it checked out. I knew I had a slight cough but it was more a clearing cough from a tickly throat. My daughter urged me to get it checked and nagged me until I finally went to the doctors. They sent me to have an X-ray where they noticed some abnormality. I then went to have a CT scan.
While waiting for the results, my partner and I researched lung disease on the internet. We were really upset at our findings. The best case scenario was COPD, or NSIP as they had a prognosis of about ten years. The other two Usual Interstitial Pneumonia (UIP) and Interstitial Pulmonary Fibrosis (IPF) had a prognosis of three to four years. So I was praying that I didn’t have these.
Unfortunately when I went to get the results the Doctor told me he was sorry but I had UIP which they later changed to IPF. The bottom fell out of my world. I went home and my partner and I cried and we hugged each other. I told the children and they were also devastated.
I went to the hospital for a check up and the doctor who saw me told me that it was just bad luck that I had this disease. Bad luck? To me bad luck is putting your money on a horse and it coming in last. Still what could I do. At 61 I was told that I was too old for a lung transplant and too well for tablets to help prolong my life (pirfenidone).
Three years after my diagnosis I was offered pirfenidone as the manufacturers were researching the effects pirfenidone had on people who are more well than the people who are normally prescribed the drug. I finally had the tablets I had hoped for. I have been on them now for just over three years. Some people do experience side effects but the only side effect I have noticed is a poor appetite. Although I use a sun block I still get a sun tan without burning.
When I discovered what I had, I could have cried and cried every day for the rest of my life but I realised that I would just waste what little time I had left so I planned things to look forward to; cruises, family holidays, family outings, holidays with my partner, weekends away. I joined the gym.
I have come to terms with my illness. I consider myself lucky. Some people don’t get the time to make a difference. My uncle had a heart attack at 40 and died instantly. I am in my seventh year since I found out about my illness. I have been on ten cruises and have just booked my eleventh for October. I have been to Las Vegas, the Grand Canyon, have flown in a helicopter, been in a submarine, travelled all over the Caribbean, South America, San Francisco, Europe, Norway etc. But more importantly I have made memories with my partner, brother, children, step children and grandchildren. I have been able to tell them every day how much I love them and show them. That means everything to me.
As you can see from my story, it needn’t stop you enjoying life. My advice is, you need to have goals. Something to look forward to. A reason to live no matter how little the steps. You can still enjoy life with a lung disease. Go to the gym, get fit, don’t sit and cry. Make the most of what you’ve got.
I still have bad days when I get a bit tearful. I don’t want to die. I don’t want to leave my partner or family. But I’m fighting it. I know eventually the disease will win but presently I’m having the time of my life. Every year, every month, every day is precious but I’m using my time the best way I can. I get a little more breathless now but I adapt. I know my limitations.”