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    • #11112

      Life with cystic fibrosis is challenging. Following diagnosis, patients need to spend hours each day undergoing chest physiotherapy to help clear their lungs of excess mucus — an important element in their ongoing treatment critical to preventing lung infections. Each person with cystic fibrosis is different, so the severity of the disease will vary from person to person.

      Click here to read about the different factors that contribute to an individual’s life expectancy, as well as the recommended treatments for children and adults to help them stay in optimal health.

      How do you feel about the life expectancy conversation? Do you like to think or talk about it?

    • #17419
      Paul met Debbie
      Participant

      I posted about this in another forum earlier, but I think it also belongs here below this general question.

      I know the common meaning of the words “life expectancy” has to do with an alleged prediction about life time and longevity. However, this must be one of the big misunderstandings that fester in the medical world of CF and in the minds of doctors and patients and their loved ones. This is because they just don’t understand sh*t about statistics.

      If any cf patient would ever ask “what is my life expectancy” the only answer should be: that is completely unknown and unknowable. No one can predict the future, and the statistical figure says nothing about a particular patient. NOTHING! It says something about the entire population of patients as a whole, that is all. On average, people with cf die younger than people without cf. That is all you can say. It is not interesting for some specific patient to know this. It is an abstract number that never applies to, and simply can not be used to say anything about a particular patient. This is even more so in the case of CF, because there is an enormous variation between patients in all ways, also in how old they get. It might be interesting for an insurance company, but never for an individual patient. When they say the mean life expectancy in is, say: 50 years old, it is not like every cf patient is going to die on or around their 50th birthday. If that were the case, this number would mean something. But it isn’t. It only means that half of the patients die before 50, and the other half lives longer. And there is an enormous spread: some will die before 15, some will still live well into their 70th. So, practically the number 50 means nothing to any single patient and should be a concern to him or her in advance.

      What age a cf patient will reach, does not depend on the ages that all of the other cf patients reached. Only as a group there is some coherence, but individual members are not connected that way. It only depends on all the specific circumstances of this individual patient, many of which will moreover in practice have nothing to do with cf. These circumstances are so complex, that there is no model available to compute this. Even if you look at a very specific sub-situation, the decision to plan the best moment for a lung transplantation for instance, you can see how complex the mathematical model is that tries to give some sort of prediction about that with a considerable margin of uncertainty. And that only regards a time frame of the next 2 years in the patients life.

      Let me illustrate how ridiculous and untrue it is to take the statistical figure and apply it to one patient, say myself. When I was 10, the (not: my!) average statistic mean age at the moment of death of all patients with CF was around 20 years. That means that at that time, half of the known patients died before, and the other half was still alive. Now, presently I am almost 58. I can say with certainty that the probability of me reaching the age of 100 is larger than that of me having died 38 years ago. You see how stupid these figures work out if applied to anything else than the entire group of patients?

      Remember the saying: there are lies, big lies and statistics. Let’s all agree to never lie again about the life expectancy of any individual cf patient please. Let’s only say the truth from now on: “No one knows”. There is no shame in not knowing. It is as gracious and elegant as the truth can be.

      Now for me, the words life expectancy mean: what I expect from life and what life can expect from me. Which is to be completely and utterly and always totally in love with each other and to be present with that continuously. Life and I don’t deserve anything less. They have nothing to do with any number or with time. I learned this early in life from my father, who – being a university-schooled engineer – understood statistics and mathematics and dispelled this myth for me once and for all.

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