Yesterday I saw my consultant and NHS physio in Chest Clinic I last went to 70 years ago, for X-ray that showed my heart on wrong side. I well recall the lady doing X-ray, she was bewildered, asked if I had turned etc., did another X-ray. Now know that I was born with PCD, but was so rare wasnt diagnosed until I was 32.
Hadn’t seen my consultant since before Covid, she was pleased that 1 daily Azithromycin last five months is keeping me clear of big infections, and I’m to continue until see her in summer. She chose chest clinic as much quieter than big hospital. I’m looking forward to getting out more in warmer weather, as I’m sure we all are, cold really hurting my lungs.
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Morrison10
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So glad your consultation went well and the Azith is doing it’s job for you.
I have always wanted to ask since you told us you had PCD if you had situs inversus but thought it might be considered a rude question. I find it astounding that your situs inversus was picked up on xray 70 years ago and not one doctor diagnosed PCD until you were 32!
Our out patient appointments are held at an old hospital which was my second home as a child, although the perimeter wards are no longer and the endless open corridors which we used to have to trail down with the porter Mr Hall to physio every day are now enclosed. I felt your post, as I had a consultation and port flush there yesterday. Here is a photo of a few of us outside our ward sat on Dr. allibone’s car - he would have been the only person in those days who had a car!
So glad you’re being well looked after and Here’s to the warmer weather 💕💕
Originally a fever hospital. Tunnels for workmen to do repairs without entering hospital
Sorry hadn’t made clear that my organs are transposed. I did little poem about cilia that are supposed to wave about and put organs in correct place. but my cilia didn’t move. I recall a hospital I use to go past on bus, had two wards open to air, with large glass roof cover. Think they were for TB patients. I was fortune that father who was prop shaft straightener got new car, Austin A30, when I was 18, and I learnt to drive, taught by ex army instructor. Went out long Sunday morning, was made to double declutch and do hand signals, despite car not needing them! Told to book test and for father to take me out more practice before test. I passed test first time.x
No need to be sorry for anything Jean. I understood your organs are transposed/situs inversus. I also understand the affects of having PCD can have on the cilia with regard to the sinuses, ears, lungs and reproduction. There was a very knowledgeable lady, who has sadly passed, who, along with a sibling both had pcd who taught us all on Bronchiectasis R Us much about your difficult condition.
Wow you were very fortunate in those days to learn to drive and to pass first time - fab. We had 2 cars in our street as a kid. One was my pal’s dad who was a car salesman and the other was a taxi driver whose name was, wait for it, Mr. Miles, in the days when taxi drivers knocked on the door and took out to the car any suitcases. Not that we used him much, it was buses for us.
No it’s not lovely, cos it’s me. Bugger all going for me! The little girl next to me is Liz, we were always in hospital together. We all had bows and striped cardigans to use up all the wool! 💕
Good heavens Jean. I think the sight of the x-ray operator finding your heart on the 'wrong' side would stick in my mind for a very long time! Take heart, Summer is on it's way, it's the sudden change in temperatures that effects my breathing and probably your's. 🙄x
Thanks Don. In days before internet wasn’t easy to find information about rare conditions. I recall consultant telling me when first saw me that he would have to go search in libraries, and it took several weeks before he found about PCD, or in my case Kartegeners Syndrome, that’s the name of people with PCD and organs transverse. About 30 years ago a doctor from WHO came to see me, said only found 40 people with PCD in UK. Jean x
I will be happy to see the warmer weather arrive. I am not good in the cold and if windy also I stay at home. Also I never go out very early in mornings, I wait until later when it warms up .
Roll on Spring and Summer and pray we get some really lovely warm sunshine
there is no specific question. I have bronchiectasis and am colonized with mycobacteria. Every two or three months my cough and mucus increase. Then I take Azith for 7-10 days restoring my good state (very little mucus). Taking Azith for longer period is I understand controversial, but my case is different from yours. Azith is antiinfflammatory and antibiotic. It will not cure infection with pseudomonas and some other nasty bacteria.
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