Primary Ciliary Dyskinesia PCD

[Morrison10]

I was born with PCD, causes bronchiectasis, sinusitis, and all my organs are transposed! Everyone has cilia, little hair like linings of lungs etc. As poems are the current fashion, here’s mine about PCD

Cilia, little hairs, you’re so important

Cilia, why don’t you wave

There’s lot of lives you could have saved

If you could properly move

Our lives would be so improved

And when some of us were in Mother’s womb

Put all our organs into right place !

[sassy59]

That’s really very good Morrison and I’ve learned something new today. Thank you. Xxx💜

[Morrison10 in reply to sassy59]

Hi, thanks. PCD is rare, babies usually died before antibiotics became available. Both parents have to have defective gene, Im only child, think had baby brother before I was born, mother would never talk about it. I wasn’t diagnosed until 32. Knew my heart was on wrong side as when 18 my employer put me into life assurance scheme for which I had to have chest X-ray. Can still see face of radiographer, who asked if I had turned round and did another X-ray! Was having lot of chest infections and at age 32 doctor sent me to hospital consultant. Because of heart etc, he said he could recall reading book, and would go and do more research, no on-line help then. Few weeks later I saw him again, said I had Kartegeners Syndrome, part of PCD,, as heart etc transposed. Had every test hospital had, barium down lungs, barium enema with about 8 men stood round saying “look at that, interesting” etc. About 35 years ago had visit from World Health organisation Doctor, who was seeing 40 people identified with it UK, said I was one of fittest she’d seen. I have strong genes, mother lived to 111. Not sure want to beat that, but still fighting. as widow live on own, boring but busy. Hope you found this interesting, hope not boring! Kind regards, Jean xx

[sassy59 in reply to Morrison10]

Very interesting Jean and certainly not boring. It’s fascinating to hear what people actually live with. Your mum certainly lived to a grand age. Thinking of you dear friend. Xxx😘💜

[Morrison10 in reply to sassy59]

Thanks, here’s hoping we all survive cold winter. Cold now really makes my lungs bad, keep indoors as much as possible. Best regards Jean. xxx

[sassy59 in reply to Morrison10]

Pete usually wears a scarf loosely around his face if it’s cold but we tend not to go out too much when it’s very cold. He wears his plastic mask now too which might help. Take care, Carole xxx

[Izb1 in reply to Morrison10]

Wow this is very interesting Jean and you must be doing something right to be so fit, wish you all the best x

[Morrison10 in reply to Izb1]

Hi, thanks for your good wishes. I have busy day, Nebulising twice, sterilising equipmenf, postural drainage afterwards, keeping record of antibiotics etc have taken, plus all domestics. Kind regards, Jean xxx

[CDPO16]

I have long thought that the human body was over engineered and far too complicated. So many things to go wrong but so many things that are wonderful if they work properly!

[HollyBoyd]

Thank you for posting, Jean. It's good to have an understanding of how different conditions affect people. Take care. 😊 xxx

[Thepainterswife]

Wow what an interesting post Jean and how well you have coped !! Xx