Anyone of my age on here?: Hi all Just... - PCD Family Suppor...

PCD Family Support Group (UK)
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Anyone of my age on here?

Hi all

Just joined the site. I'm trying to locate other PCD / Kartagener sufferers who are in their 80's. Is there anyone on here?

11 Replies
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Hi Morrison. At 67 I am a mere youngster, but have wondered how many of us pensioners have PCD.

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I am 67 too. I don't think there are many of us around though but I think there are a lot of undiagnosed people of our generation.

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I found out years ago that children born before the introduction of modern antibiotics usually died before age 5, hence there are not many of us older with Kartageners. I have learnt that many medical people need me to tell them about it. There could be undiagnosed suffers. It is caused by a defective gene that has to be carried by both parents. My older daughter has Primary Progressive MS, also a genetic fault.

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Hi I’m in my late 40s but is wonderful to hear that you are in your 80s and suffer from PCD/Kartageners. I’ve always assumed

I will have a short life expectancy. How long ago where you diagnosed and how do you manage your PCD?

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Hi, I was not diagnosed until I was 33, and was told to have a sedentary restful life, not go out when wet or windy or cold! I replied that I lived in the UK and had a young child. Gradually I started doing everything I wanted or needed to, and have remained active, housework, gardening etc, I rode my own motorcycle until few years ago. I was also told not to put on weight and have tried to do so. I do postural drainage several times each day, including when going to loo - women can multi-task. I have had several Pseudomonas infections, the worst lasted two and half years when I was doing my own intravenous injections, much safer to do at home rather than infection full hospital ward. I keep my own antibiotics of course, gradually they have ceased to be effective, I now have only 3, and am careful not to overuse, although bad to let fever develop. I have two children, and worked full time, until retired at 67.

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I am 51.

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I’m 60

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Hi Morrison. It's great to here from older folks that have PCD. I'm currently 35 and am anxious what awaits me at later stages of my life. For now I have the condition under control. Problem is my Fev1 is below 60% and am afraid it'll only get worst. I'm leading an active lifestyle which consists of weightlifting, hiking and cycling and have a full time job. I'm not letting the condition get the best of me.

I wonder how others in your age demographic do on their spirometry test?

All the best,

Karlo

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Karlo

It would be very difficult to compare yourself and how your PCD affects you, with another person with PCD, as we are all very different and are on different parts of spectrum. It can also be down to the individua's approach to how they deal with the everyday aspects of the condition. Whereas one person might do lots of exercise, do their chest physio regularly, eat a healthy diet, etc., they may still be a person who doesn't do so well. Yet another person may not do much in the way of physio and generally lead a completely different lifestyle, yet stay relatively healthy for much of the time.

It's a very individual thing, so comparing spirometry testing with others, is not particularly useful what ever age the person.

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Hi Morrison I am 42 with PCD/kartagener but my grandmother who had all the signs of PCD but was never diagnosed back then lived into her late 70's. She raised 8 children as a single mother as my grandfather passed away earlier then expected. One question I have to ask is are you able to sleep lying down in a bed or do you a postural cough when you sleep at night. My grandmother slept sitting upright in a comfortable recliner as her coughing kept her up at night when she lied down.

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Hello. I cough when I’m sitting and when lying in bed,but I do postural drainage regularly and as soon as get into bed.

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