I wanted to fly off back to the past to when I could breathe normally but I couldn't fly the dam thing. My mate Rob the torturer/technician keeps finding new toys to torture me with but he'll never make me talk. .
This is a print out of the results, the DLCO or gas transfer is where it all goes wrong for me at 27% of predicted for someone of my age and size.
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I tried to read your result Tony but I'm on my phone and it won't enlarge. Did your fev1 remain stable ? BTW, I refuse to go into the tardis because I'm claustrophobic and now they just do the tests outside it in the pulmonary lab. As Flibberti says, Fev 1 is the one that seems to be most important for us bronchiectasis people . You look great anyway so you must be doing something right.
Yes flibberti, our readings can vary a lot for different conditions but we all suffer the same breathlessness.
I get air in and out of lungs quite well but it doesn't transfer into my blood very well at all. The scarring forms a barrier between air and blood.
Rob my tormentor is a great guy really and we can normally find a little time for a laugh while he works out how to take my photo and plan the next way of trying to make me talk.
I've been referred to the nether region consultant again so we'll have to wait and see what he thinks is the best way to get me back on the list.
49% !!!! I'm green with envy. That this is good is probably down to all the exercise you do, so it's nice to know that your efforts are having a positive result.
If only FEV1 was all we have to worry about Argana, mine is pretty good but its the 27% DLCO gas exchange which is where my condition 'pulmonary fibrosis' possibly varies to yours.
Do you know what your gas transfer DLCO % is?
Exercise does help me keep my lungs clear and not so stiff but is good for most lung conditions.
Nobody ever mentions DLCO to me Tony so FEV 1 is the one I worry about most. My condition is changing, the symptoms are changing and on my November XRay report, the term Pulmonary Fibrosis was thrown all over the place. Not IPF, but extensive scarring/ fibrosis from the damage inflicteed by the 40 odd years of Bronchiectasis. I have managed to work out an exercise routine that doesn't make me breathless. This is using a Skywalker machine and two others in our local park.. My legs are getting a great workout snd the weakness I'd had in them has improved hugely. I can also do sessions of 7km on the exercise bike, but only to the point where I'm barely breathless. For the rest, I walk but not too far and not for too long. On my really good days I can do the exercise routine you put up on video. But I have to watch my sats all the time and try not to go under 90. It's a delicate balance.
Not to sure what happens to the other lung, I guess they leave it to welcome the new one in. . It would be nice to see 100% of predicted across the board wouldn't it. xx
What is the DLCO SB/VA as it is not too bad? I kind of thought that was the value adjusted for the elevation above sea level but obviously not as there would not be that kind of a difference.
Great photo! I confess to being another who gets panicky at the air switch off in the tardis so I'm just impressed that you're smiling! Makes my gas exchange of ~50% seem super human! And as I'm aware of my difficulties, you must really struggle. Roll on transplant for you!
Smiling comes easy for me Fern after the hard times I had 4 years ago in ICU, but if you were to place a wasp in that chamber with me I wouldn't look quite so comfortable. I'm ok in confined spaces but I run a mile while swatting like a crazy tornado when there's a wasp nearby. Ha Ha.
I love the photo, I've only been in the tardis once and I'm sure my face was very red with the torture! You are looking good on the outside alrighty, I'm rooting for you to be made better on the inside you work so hard at it Tony, hugs huff xxx
Hi Puff, its not my FEV1 that's the main problem with me, having Pulmonary Fibrosis there is scarring on the outer parts of my lungs, the alveoli so I don't get oxygen into my blood and that's what really counts at the end of the day. I basically operate on a 1/2 of 1 lung so if you imagine someone removing a lung and half of the other lung that's what I'm left with at 27%.
I have never been offered inhalers as my tubes are clear but I live on oral steroids to keep the inflammation down in my lungs.
Wouldn't it be interesting if we could swap lungs for a day and see how the different conditions effect our body's.
I guess we all suffer with breathlessness at the end of the day and its not a lot of fun is it. .
Looking good as ever Tony and ready for take off. I am not sure what any of the numbers mean but I do know that Pete has good oxygen levels in his blood even with a chest infection. Very wheezy at the moment but I am taking good care of him.
The numbers help the boffins make their decisions but its how you feel that really counts. Sorry that Pete's suffering with a chest infection but I'm sure your doing a great job at looking after him.
He's a very lucky man sassy and I'm sure you will have him ship shape and fighting fit for the spring/summer that's just around the corner.
Doing my best Tony but it has been harder because I also caught the nasty virus that is doing the rounds. Never mind, on the mend now thank goodness. You take care and thanks for the info. xxxx
The question is who cares for the carer when the carer is ill. I remember when the whole family was ill in bed for days with a horrible sickness bug, of coarse I ended up with it longer than the rest as usual. That was a week I hope we never repeat.
Keep up the great work you do Sassy but look after yourself as well.
OMG!!! When I first saw the you in the caption I thought the keep-fit CD has went to his head now he a recording a record, Then I thought to myself I wonder what song it would be, Then I remembered Between Two Lungs by Florence & the Time Machine. go yourself Tony, MC
Maybe I should head off to the recording studios to record an album and play it back to Rob the torturer/technician to get my revenge. It would make him talk pretty quick I think.
Wish I had lungs as strong as Florence, she's got an amazing voice so I would certainly crash and burn if I were to try one of her songs.
You and ya wind bags will still be going at 101 to be sure. It pays not to take to much notice of what the machines say, its how you feel that really counts, trouble with that is I sometimes feel pretty bad oh dear!!! that's not good .
I had one of them done in newcastle. My gas transfer was only 19. I go back up on Monday for my 4 day accessment. Hopefully I will be joining you soon on the list tony x
Your making me look a picture of health Michelle, 19 is pretty low and I see why they want you on the list ASAP.
I'm temporarily off the list again until this dam abscess gets cleared up but hopefully you'll be getting on the list after the tests next week. Good luck.
Thank you hopefully this time next week I will be on the list. I hope you get back on the list very soon tony. I will let you know how I go on. I'm only there monday and come home on thursday.
Very true about gas exchange. Although I have an FEV1 of 24% I only need 1/2l/min oxygen, as and when. As FEV1 is how much you can blo0w out in one second I can't really see how it affects the actual exchange, only by how much air you can breathe in and CO2 out,
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