My story

About me

Cool that you're here!

I'd like to take the opportunity to share something about me and my life with CF.

I would also like to say a few words about the website: All articles and information are based on my own experiences. Not everyone shares the same opinion, that's a good thing. If you don't agree with something, you are welcome to write me. Certain contents (e.g. the therapy videos) were created in cooperation with specialists from the CF industry. It still can happen, that the instructions or contents do not apply to you. In case of doubt, please get a professional opinion from a doctor or physio. I have also not paid attention to whether I use the male or female spelling. Of course, all of them are meant. 

My name

Patrick

My CF fight experience

  • 26 years

What I do in my free time:

  • Playing guitar, building my own guitar
  • Playing tennis
  • Dancing tango
  • Traveling
  • Eating
  • Surfing

What my job is:

After my banking and finance diploma, I took over a job in a bank, leading a risk team.

"It's amazing how possible the impossible becomes when the motivation is high enough."

Jorge Bucay

My name

Patrick

My CF fight experience

  • 26 years

What I do in my free time:

  • Playing guitar, building my own guitar
  • Playing tennis
  • Dancing tango
  • Traveling
  • Eating
  • Surfing

What my job is:

After my banking and finance diploma, I took over a job in a bank, leading a risk team.

 

 

"It's amazing how possible the impossible becomes when the motivation is high enough."

Jorge Bucay

About me and CF

The diagnosis for CF was made a few weeks after my birth. At that time the doctors told my parents that I would probably not live past 15 years. (If they had known). Pretty hard hit for parents who just gave birth to their first and only child. That was in 1993, when the whole situation around CF looked quite different.

Fortunately as a child I never had big problems with CF. The morning inhalation was a painstaking task, for which I still had an old Pari nebuliser. It was about as loud as a pneumatic hammer and had 30 minutes to nebulise a little liquid. I was awake at least afterwards.

My childhood was relatively quiet, no big sign of CF. In my first 18 years I only had IV therapy (Pseudomonas) and never a hospital stay. That was about to change. 

At 20, still fit and healthy, I decided to move to Australia for a while. My apartment was right by the sea and the salty air was super. I had reduced my therapy to a minimum, during half a year I just went jogging 3 times and inhaled once every 2-3 day. 

Later, at the age of 21 and back in Switzerland, I had my second IV therapy. Infested by the Mycobacterium abscessus, the doctors pumped me full of antibiotics. This showed success, at least temporarily. 

After that I had a relatively quiet time again, I travelled around the world a lot without wasting a thought on my health. 

One year later the next IV therapy followed. My FEV1 decreased from my usual 54% to 38% within a short time. A sad record that was to be broken later. But a few weeks later I was back on my feet again. 

When I was 24, CF contacted me. I didn't pay enough attention to her. In May 2017 I was hospitalized for the first time. That was really hard, but I thought it would be good again in a few days. 

The second stay followed in June. In the last treatment the Staphyloccocus Aureus had been fought, this time it was a fungus (Scedosporium).

The treatment had helped a little temporarily, but only for a short time. The third stay in the same year followed in September. Again a fungus treatment was carried out, this time with success. I was practically germ-free, apart from the mycobacterium avium, which settled down in my body in the meantime. However rather as quiet neighbour, therefore this was not treated.

When I was lying in the hospital in September, it suddenly became clear to me that CF was actively raging. And not just for a short time, no, she's here now. Since I don't want to give up and still enjoy life, I booked a flight from the hospital bed back to Australia. So 3 weeks later I flew back to Down Under and travelled for 2 months.

Everything went well, but on the last day I got sick and had to fly home for 25 hours. At home then, next IV therapy, this time ambulant.

In February 2018 then, the mycobacterium volunteered. He probably didn't like it as a silent subtenant. My FEV1 dropped again to 41%. That was the beginning of a still ongoing therapy, with success as it turned out in May this year. The avium is no longer detectable in the sputum, but the therapy is still continued.

Now back to the sad record, between February and April my health got worse and worse. Blood in the sputum, no more endurance, old people overtook me on the stairs. FEV1: 32%. Proven in sputum: scedosporium apiospermum, a rather rare fungus, difficult to treat. The next hospital stay followed, 2.5 weeks, total 7 antibiotics. The doctors speak of disability insurance and entitlement to 100% incapacity for work. Since I have always worked 100%, that hurt a lot.

After the stay I felt a little better, I am at home, work 50% (I absolutely wanted to do this). That's when I decided to have a Power Week. A week full of sport, therapy, sleep and good nutrition, and see there, within a week I was able to increase my FEV1 by 8%, my weight is also higher again and I can climb stairs again.

Now I sit at the laptop and write this text, feel good, had previously inhaled and done my therapy, then I go jogging.

Even though the CF tried to destroy me last year, no, I'm sitting here with my head up and a lot of motivation to win this fight. I am aware that health breakdowns will come again, but I will be ready!

About me and CF

The diagnosis for CF was made a few weeks after my birth. At that time the doctors told my parents that I would probably not live past 15 years. (If they had known). Pretty hard hit for parents who just gave birth to their first and only child. That was in 1993, when the whole situation around CF looked quite different.

Fortunately as a child I never had big problems with CF. The morning inhalation was a painstaking task, for which I still had an old Pari nebuliser. It was about as loud as a pneumatic hammer and had 30 minutes to nebulise a little liquid. I was awake at least afterwards.

My childhood was relatively quiet, no big sign of CF. In my first 18 years I only had IV therapy (Pseudomonas) and never a hospital stay. That was about to change. 

At 20, still fit and healthy, I decided to move to Australia for a while. My apartment was right by the sea and the salty air was super. I had reduced my therapy to a minimum, during half a year I just went jogging 3 times and inhaled once every 2-3 day. 

Later, at the age of 21 and back in Switzerland, I had my second IV therapy. Infested by the Mycobacterium abscessus, the doctors pumped me full of antibiotics. This showed success, at least temporarily. 

After that I had a relatively quiet time again, I travelled around the world a lot without wasting a thought on my health. 

One year later the next IV therapy followed. My FEV1 decreased from my usual 54% to 38% within a short time. A sad record that was to be broken later. But a few weeks later I was back on my feet again. 

When I was 24, CF contacted me. I didn't pay enough attention to her. In May 2017 I was hospitalized for the first time. That was really hard, but I thought it would be good again in a few days. 

The second stay followed in June. In the last treatment the Staphyloccocus Aureus had been fought, this time it was a fungus (Scedosporium).

The treatment had helped a little temporarily, but only for a short time. The third stay in the same year followed in September. Again a fungus treatment was carried out, this time with success. I was practically germ-free, apart from the mycobacterium avium, which settled down in my body in the meantime. However rather as quiet neighbour, therefore this was not treated.

When I was lying in the hospital in September, it suddenly became clear to me that CF was actively raging. And not just for a short time, no, she's here now. Since I don't want to give up and still enjoy life, I booked a flight from the hospital bed back to Australia. So 3 weeks later I flew back to Down Under and travelled for 2 months.

Everything went well, but on the last day I got sick and had to fly home for 25 hours. At home then, next IV therapy, this time ambulant.

In February 2018 then, the mycobacterium volunteered. He probably didn't like it as a silent subtenant. My FEV1 dropped again to 41%. That was the beginning of a still ongoing therapy, with success as it turned out in May this year. The avium is no longer detectable in the sputum, but the therapy is still continued.

Now back to the sad record, between February and April my health got worse and worse. Blood in the sputum, no more endurance, old people overtook me on the stairs. FEV1: 32%. Proven in sputum: scedosporium apiospermum, a rather rare fungus, difficult to treat. The next hospital stay followed, 2.5 weeks, total 7 antibiotics. The doctors speak of disability insurance and entitlement to 100% incapacity for work. Since I have always worked 100%, that hurt a lot.

After the stay I felt a little better, I am at home, work 50% (I absolutely wanted to do this). That's when I decided to have a Power Week. A week full of sport, therapy, sleep and good nutrition, and see there, within a week I was able to increase my FEV1 by 8%, my weight is also higher again and I can climb stairs again.

Now I sit at the laptop and write this text, feel good, had previously inhaled and done my therapy, then I go jogging.

Even though the CF tried to destroy me last year, no, I'm sitting here with my head up and a lot of motivation to win this fight. I am aware that health breakdowns will come again, but I will be ready!

Why this site exists

From personal experience I know how lonely CF can feel. Also the procurement of information is partly rather difficult. With this website I would like to offer you a platform, which gives you the possibility to exchange with someone, to talk about it and to laugh. I would also like to publish useful information and test reports here. Write me if you want to know more. I am happy.

en_AUEnglish (Australia)
de_DEDeutsch en_AUEnglish (Australia)