Yay! turns out i'm not crazy!

Had my lung function test today, I was a little worried that while i'm on pred, and so many other meds and was actually feeling pretty good (chest clear as you would expect for lungs which know they're going to see a doctor) i might not show much reversibility at all. so i was pretty reluctant and part of me wanted to not go coz I dont want my lungs to look so great on paper when i feel so rubbish. I wasn't at all surprised when the guy doing the test said my lungs seemed to be ok, only slightly below predicted (all around 80% of prediction values) but after 6 puffs of ventolin and a 20min wait my peak flow had increased by 66%, and fev1 by 27%. The result was so significant my mannitol challenge has been cancelled, as I clearly have a high degree of reactivity and reversibility in my airways. As much as I want my lungs to be etter than they are, i am just so relieved to have something that SHOWS how i feel! all my lung volumes were lower percentages of predictd, i got the impression that was a good thing in asthma as it means i am still getting rid of the air, even if its not easy! one thing that did confuse me was that my lungs dont seem very good at diffusion. 65% of predicted? that doesnt sound good! but not sure what causes that? could it be inflammation in my lungs making the diffusion pathways larger? i dont really understand this stuff! Also, the guy looked up my Hb to see if that was causing my poor diffusion (it wasnt) and he mentioned that i had a high level of 'allergicness' in my blood (ok..he might not have said allergicness but that was the implication) so hopefully this will help them understand whats going on a bit better, maybe we can actually find something thats going to make a difference now! fingers crossed! but yeah...wanted to share the good-ish news! :-) hope everyones well!

8 Replies

  • yay! I really do know how you feel as I've had the same. Maybe not so clear on LF tests (I hate them and I'm bad at doing them from a technique POV so sometimes I have to have reliever just to get a sensible set of results). But like you I have been really pleased when I finally get something on paper that shows it's not just in my head, because my first two consultants basically said that it was and I do worry when on meds as they don't always seem to take that into account even if the person doing the tests does. So really glad you have a result and no challenge yay.

    I was really unhappy during my histamine challenge because it just wasn't doing anything, and the physiologist doing it clearly thought I was really screwed up for wanting a positive result, so I had to explain (I think it was maybe because I hadn't stopped meds for that long so I still had some Symbicort doing its work, and had been allowed my Atrovent the previous night). I *think* she got it because when I showed a good reversibility after a neb and felt AMAZING lungwise, able to walk at a proper speed and not trail behind, she said 'look, you are showing some effect, it's much better after the neb'.)

    Stray, I think I might have said something about the challenge on another thread of yours? But if not feel free to ask me about it as I have had one, though I don't know how similar our lungs are...

    SO true though Soph about 'lungs that know they're going to see a doctor'. Officially I never wheeze and if asked I say this, but I also say 'well, no-one has ever caught me at it but I think I have sometimes.' One cons just wrote in his clinic letter 'difficult to assess as she does not wheeze' which is a major improvement on assuming there's no asthma because no wheeze.

  • Yeah - it is a strange thing to be pleased about, but i figure, we're working in the mindset of ""we ARE feeling rubbish so we might as well BE rubbish"" anyone who says its a strange thing to 'want' has never been in the position. we WANT to be well, but given that we arent well, we might as well have it confirmed that we aren't just making a fuss over nothing.

    for me, by far the best bit was the guys face when i did my first peak flow attempt after the inhalers (i also realised that when you're asymptomatic and take an inhaler it is MUCH easier - so much more must get into your lungs when you can actgually breathe) he just looked so surprised, and basically said, how are they even questioning asthma, you show so much reversibility when you are well! And its true - my peak flow increased by 66% and i couldnt even significantly tell the difference, my body must be so used to compensating by working harder. its also good news coz i am actually managing to empty my lungs, my residual volume was very low, so clearly i am able to get enough air out when i have to!

    stray - much as i'd love to say i'm sorry im not doing the mannitol test to give you feedback, sadly im too relieved to! I really dont like the idea of it! have you had the reversibility testing done? the guy who did my tests today wouldve been doing my mannitol challenge test tommoz, and he said if my lung function tommorrow was lower than today then i wouldnt have actually had to do the test as clearly my airways did 'reverse' which is all these tests show!

    I just feel a lot more confident now - to go and complain about my meds, and side effects, without worrying that theyre just gonna stop them and not replace them. Got a GP appt on monday, and gonna have a chat about my pred, its making me really miserable and i would really like to try to stop them. im also interested in trying an atrovent inhaler. and after a long hard think i've decided to ask to change my consultant at uni, there is another one who has seen me as an inpatient who just seems so much more competent, and actually seems to understand asthma.

    feeling really positive at the moment. and after spending the last 4 months in and out of hospital, and having people be mean and unhelpful, im just really enjoying this feeling! Sending it out to as many people as i can!

  • Just had to make a comment on this. Ive had years on and off of the its all in your head. For me a big problem is that i had a known serious mwntal illness before my body started to mess up. But one doesnt exclude the other. And i just wanted to say gpad youve hopefully got past that problem now soph. Hwever i personally feel somewhat offended by the assumption that anyone with any mental health issue is crazy. Im nt crazy. I have an illness that i dont control just the way i cant control lungs heart etc. Sorry this has turned into a rant :-( am really strugglibg on all levels myself at the mo. But still teally pleased fr you soph ;-)

    Rose xx

  • Soph - so very glad.

  • rose - really sorry i caused offense, i grew up in a household where my mums anitdepressant meds were affectionately called her crazy pills. my sever anxiety issues around food were called my 'crazies', in fact we refer to anything anyone has as there kind of specific thing that they worry about as their 'crazy' and i forget that it is a word with negative connotations for some people. I'm so sorry you're struggling at the moment. I myself have just managed to get my mental health problems under control, and this i am sure has been a factor in some of the negative treatment i have recieved in the past. Actually i myself am of the opinion that mental health is much harder, and more impressive when overcome than physical illness. Somehow the support systems arent in place and it so rarely is 'just a pill' it involves much more time and dedication and internal strength to overcome in many cases. It is not something i would ever knowingly disrespect. i try to make light of the situation (as i do with physical difficulties) but it was never my intention to imply that mental health issues were in any way 'less important'. in my case i had spent so long trying to overcome my breathing difficulties in my head that if it was a mental health issue then im not sure how i would have ever rectified the situation, and it was a real fear that people would deny treatment if they thought it was all in my head, that was the thinking behind the topic name. again sorry for any offense called. it was not my intention. i will see if i can change the topic title to stop anyone else being upset!

  • Sorry i understand all that you say and indeed humour is a very good therapy with depression etc. Unfortunately right now im really struggling with my issues so its more an over reaction on my part. So not to worry. Probably im more to blake than you. Maybe i should just not post since ky mindset is basically making everything seem like a bad news rather than good. Sorry no worries i apologise for worrying you.

    Rose xxx

  • dont stress, it was insensitive on my part - like i say, i just dont think of these things, and i should! i saw your post on the all nighters one, i totally understand! and id rather know if ive upset someone so i can explain, id like to hope you feel better about it now ive explained, and if so its better this way!

    laughter is the best medicine, but unfortunately it is contraindicated in the treatment of asthma! sigh! chocolate on the other hand....highly beneficial, and i maintain its as important as my theophylinne tabs!

    just realised, the other benefit of not having the mannitol test in the morning is that im back on my meds that i had to stop, i wasnt looking forward to a night without my seretide!!!

  • Ive downloaded most of mark steel lectures onto my smartphone music great entertainment plus somewhat educational. Also a couple of dvds of a french comedian i love gad elmaleh. So ill give those a shot ;-)

    Goad you can get back on meds and hopefully the lf tests will help target the exact keds best for you. Take care.

    Rose xx

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