Life with CF & finding support

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My childhood and youth with CF

Hi, my name is Lucas and I was born in Spain, 1983, during the time when cystic fibrosis (CF) was barely known in this country. One year before I was born my parents had just lost a son who had only lived a few months.

At this time no one knew the cause, but it was almost certain it was due to CF.

As a kid I was regularly sick with colds and the doctor’s were unsure of the problem, so I had taken several treatments by pediatricians without knowing what they were actually doing. In 1989, everything had changed; I had visited a specialized unit in a hospital in Madrid, Spain, and I was finally diagnosed with CF, beginning my very first treatment.

After a few years my health was deteriorating. Unlike most the side effects, the damage was not in the respiratory system but in the digestive system, and it was getting worse.

As a result, some bleeding varicose veins appeared in my esophagus, which had to be burned with an endoscopy, but the damage still remained and my liver became completely useless - I needed a transplant.

My serious health condition plus being thin, made the surgical team think this surgery would be unsuccessful and very difficult to survive. Luckily, the doctor treating me kept insisting so the surgical team eventually came around, and I was finally on the waiting list for an organ.

I was on the list for less than a year when my parents finally received a call: a donor was available. It was from a child a little bit older than me with the same weight and height. His family decided to donate his organs and his liver saved my life, something which I will be eternally grateful for.

On September 14, 1993, at 9 years old, I was given ​​a liver transplant. The surgery was successful and four days later, when I turned 10 years old, I was in intensive care: I had the best birthday gift anyone could ask for.

Everything was great but at 18 my pancreas suddenly stopped working and it caused me a pick in my glucose level of 940 mg/dl, which caused diabetes and a loss in my sight by 70%. I thought I would never see the world around me again.

But after everything that had happened so far I could not stop, so with lot of effort: One year later I fully recovered my vision again and got my driver's license.

Now 29 years old, I still struggle every day. My main healthy routine is sports; I take a strict medical treatment and physiotherapy, combined with natural remedies. I have had my transplanted for 19 years and my lung function its maintained margins from 77% to 83%.

 

I will still continue to fight until my last breath because I believe you have a job to do in this world and until you reach the end you have to keep trying.

You can follow Lucas on Twitter, on Youtube, on Facebook and, of course, on his blog!

Know more about him!

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Polish CF Patient - Iga Hedwig Diary - published in 2011
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