madonbrew

Well now you mention, I was wondering what planet you were from 😂😂😂

Aww hun, sorry you’re not feeling well again! It’s so tricky with the pred isn’t it! Hmm, I have no idea about your results but I’m sure someone will be able to help! You don’t need to apologise too...everyone just has different lung problems!

You know what’s strange tho...I slept nearly all day yesterday too! Felt so rough!

Sending love ❤️ and hugs 🤗

Dee xxx 😘

mylungshateme in reply to madonbrew

Yea I also wonder which planet I'm from but more importantly I'm trying to figure out which one has a protective zone layer around it from covid and actually any allergies or illness and maybe relocate 🤣😂 fancy it Dee?! 😂🤣😂🤣 hope your feeling better today. X

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madonbrew in reply to mylungshateme

Sounds like a great idea 💡 I think!!! When we going? Not sure about all this rocket 🚀 travel though, but if it’s all there is, it will have to do!!

Still more nausea, but my GP just rang. She’s going to get in touch with my consultant for CT results ( different county hospitals) and will ring me in 2 weeks. Depending on CT results...in the event they don’t shed light on what’s happening, she’ll refer for more tests...an endoscopy I think 🤔 but dunno yet. But I’m glad they are listening and taking me seriously!

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mylungshateme in reply to madonbrew

Aww are the antiemetics not really helping? Its awful feeling nauseous all the time it's so draining as you know. Have you had endoscopy before. It's not that bad I mean , it's not something you'd opt for every day for a day out but it's ok. 🤣😂🤣😂

That's good they're chasing results though fingers crossed. You almost hope there is something so they can fix it, rather than having to just keep plodding along!

My respiratory nurse just rang supply problem with mannitol (just my luck isnt it) but cons said to stay off pred if I go to 75% for more than 48hrs ring gp asap who will send me to HOT clinic for urgent tests. But hopefully have mannitol test within 2 wks I'm priority 🙂. Also she said now off pred they should be able to find cause within next few weeks! This makes me soooooo happy!!! 😁😁😁😁💪♥️🥰x

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madonbrew in reply to mylungshateme

Yay!!!! That will be so helpful if they can figure it out while you’re off the pred! I’ll pray you stay off it& that they manage to finally figure what’s really happening for you!!! And that mannitol test is definitely within 2 weeks!!!! 😘🥰❤️

I’ll reply to your message so I don’t sabotage your post!

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Bkin in reply to mylungshateme

Sounds like you have your answer well done for making contact with your respiratory nurse for ongoing advice

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Charlie_G

With the usual caveat that I’m not remotely medically qualified....

As a general rule of thumb, anything above 80% for fev1 and fvc is considered ‘normal’. Similar applies for the fev1/fvc ratio, where below 80 is indicative of an obstructive airway problem, although the value does vary slightly with the natural decline due to age: older people will have a normal of about 70%. However, along with indicating the ratio is normal, a value of 80 or above can be present with a restrictive lung problem, so although the ratio is a really useful measure for diagnosing obstructive problems like COPD and emphysema, it’s not quite as clear cut with figures of normal or higher. Pneumonia can often lead to spirometry results suggestive of restriction. I believe I’m right in saying that anything above 50% is considered normal for fef 25-75. Some of your gas transfer figures (TLCO and KCO) were a little bit on the wonky side based on my layman’s understanding, as was your RV (the amount of air left in your lungs after finishing the blow) but what relevance there was to that would have to come from a doctor looking after you and aware of what was going on at the time.

It’s always worth remembering that spirometry figures are a snapshot in time and can vary dramatically based on what’s going on both physically and mentally, so these numbers aren’t actually a huge help to you now without another set for comparison, particularly when proper spirometry technique is a skill that improves with regular, repeated practice. Hope that helps a little, though!

mylungshateme in reply to Charlie_G

Ahh I see, thank you so much for that info it makes sense. Yes I kinda thought only a snapshot of the moment hence why not really looked into results until now! I knew nothing major so wasn't worried but it's been bugging me that i actually just didn't really understand it!

I wish they did these tests on the days where your really not right in any way, shape or form. The days where you can barely walk or talk due to being so SOB. X

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Parliament53

Hello,Firstly, it is terrible that you feel that you are an alien. YOU ARE NOT!!

It is just wrong that, apparently, you have been left feeling so neglected and in need of EFFECTIVE treatment (be it physical, psychological or, possibly, both).

The impression that you give is that you are well aware of your condition, currently feel much worse than you should be and are in need of being afforded a respectful consultation which is acted upon.

If you have been under the care of the same consultant for some while, he/she will have built up a history and SHOULD be in a good position to advise in your best interests. If you haven't asked for this, you would advised to do so, otherwise, you have a right to request a second opinion.

You know your body better than anyone so don't be put off getting the treatment you feel you need.

Wishing you better 😷

mylungshateme in reply to Parliament53

Hi, thanks for reply it's a long story been going on for over a year now! Different Drs, nurses, Reg's, consultant's and teams! This latest consultant I've had since his reg really upset me in September following hospital admission (actually traumatised me worst appointment ever) I'd been moved from respiratory team who were fab, but felt out of their depth to severe asthma team.

First appointment with reg... part of severe asthma clinic is your part of mdt so respiratory physiotherapy, clinical psychologist and consultant. 1st appointment with psychologist - was shocked at my appointment with reg and agreed that was the only thing stressing me!! So he spoke to respiratory lead who happens to be lead consultant who then rang me to apologise dec.

Met him first time last month for appointment after waiting 2hrs!! Seeing him again 6 wks.

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