Hope you are all doing as well as you can be doing! 😘
So after a few years of various tests, prodding and poking, and hospital/doctors visits I am finally having my CT scan this coming Sunday! I’m really hoping to finally get a clear diagnosis - IPF or no IPF, COPD stage 3, Emphysema, chronic bronchitis etc - bring it on! Just lay it on the table and give me the news, good or bad so that I can move on!
On the plus side, this week leading up to my scan we have been in a luxury lodge in the Cotswolds - heaven! A lovely way to unwind while hopefully we finally start to come to the end of my diagnosis 😎😎
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BrianTaylor
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Good news all round, the lodge, the scan... Not knowing what’s wrong is hard to cope with, because you don’t know what’s going on. Hopefully you’ll soon get the resultant be able to move forward and actually be able to deal with whatever it is. I will be thinking of you and keeping my fingers crossed 🤞
Hello HH, nice to hear from you. If you’re anything like me you will be awake long into the night lol.
For me this result has been a very long time coming. I’m not daft - I won’t find anything out this weekend but I see it as the start of finally getting a proper diagnosis, and like all of us, that is all I want!
As things are I think I have lung scarring of some kind, COPD - possibly Emphysema and chronic bronchitis, and who knows what else. I’m happy to finally feel like im at the start of the journey to my final diagnosis.
How are you doing? I hope things are going as well as they can be for you xx
Being at the start of the journey to a diagnosis is a good place to be, because it means have direction and a destination. Not knowing is hard because how can you deal with something when you don’t know what it is you’re dealing with. My mind fills the blanks with all kinds of horrible thoughts and fears. Knowing can be scary but somehow the unknown is worse. At least you’re on your way to knowing.
Yes I tend to be awake much of the night too. I seem to have forgotten how to sleep. 🙄 But otherwise I am doing not too bad, thank you for asking 😊
Well i hope Brian that the CT scan just reveals bog standard lung disease,be it bronchial or emphysema related and that any scarring has been as a result of infections and not fibrosis related.
In which case it's raise a glass,crack on with life,do all the right things and you will be posting here long after i shuffle of the planet.
Good morning Littlepom! 😊 Feel free to follow 😛 I’ll update as soon as I get more info but I feel this is just the start of discovering what’s actually going on inside those lungs of mine! Hope you have a great weekend 😎 x
Wishing you all the best for Sunday and your scan. You've waited so long for a definitive diagnosis but at least you've been staying in a luxury lodge in the stunning Cotswolds!
Can’t argue with your points about the wait or the luxury lodge SquirrelsHolt! I struggled a bit with the hot tub but it was lush none the less. Thank you for your kind message 😊😊😎
Good luck with the scan, let's hope it brings good news - though as you say ANY news is good news!
I had a scan about 10 years ago, can't remember what it said about my lungs but I do remember it showed I had two (or was it three?) discs ruptured and bulging out and almost in contact with the nerve. "So that'll be why my back gives me hell at times, doc?"
"Oh yes, you must have damaged it at some time. Do you know when?"
"Well I've had trouble with it since a car accident 42 years ago when I was 17, my back goes into spasm and all I can do is lie flat and wait for it to ease off, if I stand I cannot straighten up. It takes 2 or 3 days."
"That sounds about right - did you not get any treatment for it?"
"Not really. I was offered surgery once, to fuse the lower vertebrae but declined," (I had known two men who had had that operation, one an ex-fireman, the other ex-SAS, both super-fit but the op had left them far worse, and the op had a pretty low success rate).
I was sent for physio once, I was about 25, and they sat me in a chair, put a hot pad at base of spine, like a hot water bottle, for half an hour and told me to come back next week for another treatment. I didn't bother. And one GP told me to bend down, touch my toes. When I complied he said "I wish I could do that. Goodbye!"
Of course, I couldn't get to docs when it was bad. Other GP s seemed embarrassed that they could not diagnose, had nothing to offer, and some just hinted at my being a malingerer. Bad backs were notorious. So just to find there was a real physical problem was good news - I was at times almost believing the malingerer accusations myself. As though I was conjuring up the pain to avoid doing something
After the scan I was sent for physio again, with little expectation. I was told to strip, stood opposite the physio who told me to do various movements while she stood back and watched, then put me on a couch under a deep heat thing (ultrasound?) to relax muscles. Very pleasant, but I assumed only an updated version of the heat pad used 25 years earlier. I was expecting some hands on manipulation, but physio just came back with an exercise sheet and an appointment to come back.
I did the exercises obediently, if only to prove how useless they were as I felt some physical maniplation needed, to put it straight. (I'd spent a fortune at osteopaths over the years). I went back, the physio checked my progress, approved my improvement in movement, told me to keep up the exercises and signed me off.
It was ages before it dawned on me that I'd had no back trouble at all since seeing her I had dismissed the "treatment" as being about as ineffectual as previously, but that girl really knew her stuff and I had to eat my words. Happily. It was years before I had back pain again like I'd had pretty frequently before. She had built up muscle holding the discs in place, keeping them away from the nerve and that did the trick. And other exercises had improved my posture, so I was putting less strain on my back. When something hurts, we avoid doing whatever causes the pain, very often continuing to do that after the need has gone, but it means everything can be a bit out of kilter. She restored my equilibrium so everything balanced in a more natural way. Brilliant! (She's still there, and head of dept now).
So you may learn more about your body than you're expecting, as I did. That scan did a whole lot of good for me, and the side issue of showing up squashed discs alone improved my life vastly. Hope it does as much for you.
Hi Offalot, cracking story! Great to hear that despite your scan not leading you to instant help, you were finally put in touch with what sounds like an amazing physio! Fingers crossed tomorrow can give me some more insight into my weary body 😂😂 Enjoy your weekend 😎
You've missed something out of your list - Bronchiectasis! (Which is a condition and not a disease so that would be a relief.) Disgraceful that you've waited years for a diagnosis. This CT scan should have been done ages ago. Methinks they try to save money with X-rays and antibiotics etc. whereas if they had gone straight to the CT scan................. Good luck! Don't forget to let us know.
Hi Claudine, the delays in proper treatment/diagnosis have been pretty frustrating to say the least but I have finally met a chest consultant, (first one I’ve ever seen!) who seems like he is on the ball!
Yes I left off Bronchiectasis, and probably many more! 🤔😉
I often think that my copd journey would be so much easier if I had a CT scan sooner. Instead of a bit of forethought the NHS have potentially wasted money on me by looking for, or even treating me unnecessarily. Totally agree with you. 😎 Thanks for your lovely message 😊 x
Good luck with the scan Brian, this will show alot of whats going on, dont know why you have had to wait so long. Glad you enjoyed the lodge in the Cotswolds, the break came at the right time, you will now be calm and refreshed ready to deal with anything x
Hi IZB1, thank you for your message. You are dead right the break was perfectly timed and thoroughly enjoyed! I was shocked as my scan date came through within a week of seeing the consultant! Had a bit of a nightmare journey home due to traffic but I’m very glad to be back! x
Thank you for your kind message Nichola. Just need to be up bright and early tomorrow - the scan is at 9am! I’m not great at getting moving in the mornings, neither are my lungs, especially on a Sunday! 😛 x
Thank you for your message Majt! It’s only my second time in a lodge - and this one was a cracker. My only complaint was that the kitchen was very basic. Had a lovely week though! Fingers crossed for tomorrow 😊😊
Fingers crossed for tomorrow yes we always stay in the lodges in Keswick they look out onto the fells I like to watch the climbers. But they haven't a hot tube. Take care 😊😊
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