Lung Function Test

[Suzie42]

In June I had my 4th lung function test since my IPF diagnosis back in 2020. My first test was 79% total lung capacity which made me a candidate for anti fibrosis treatment. Last year after a bad chest infection it reduce to 78%. After pulmonary rehab and face to face sessions with a breathing physio (I was breathing incorrectly) My lung function is now 81% !!! I had video call with the Brompton yesterday, who gave me this news. He was so delighted with me, I think I had one of the best days for a long while, feeding off his elation. It proves that Nintedanib and Pirefidone (which I'm on) has worked to help the progression of this nasty disease. Ofcourse this medication has nasty side effects which are currently really getting to me. Indigestion and lots of pain. Dr agreed that I should take a 4 week break from my meds while on holiday to Greece in September this will rule out meds if symptoms persist, so fingers crossed that symptoms will disappear otherwise will probably need further investigations.

Sorry for such a long message, but wanted to share x

[sassy59]

That’s fantastic news Suzie and I wish you a wonderful, pain free holiday in Greece. Wishing you well. Xxx❤️🩷

[Suzie42 in reply to sassy59]

Thank you Carole, it's nice to get good news sometimes. Jill xx

[leo60]

Hi Suzie I'm not surprised you wanted to share!! Well done you!

Have a wonderful holiday, should be a little cooler by then xx

[Suzie42 in reply to leo60]

Thank you. Yes will be cooler then. This will be our 32nd year to the Greek islands and always go Sept/Oct. the sea is warm for swimming, cannot wait xx

[leo60 in reply to Suzie42]

Sounds amazing 😁 have a lovely time ☀️🌞🌻😊☀️ xx

[Suzie42 in reply to leo60]

I will do my very best 🥂☀️🇬🇷🤞xx

[Patk1]

Have they tried u on some ppi meds eg omeprazole .Great to read Yr positive post x

[Suzie42 in reply to Patk1]

Yes have been on Omeprazole for 3 years, changed me to Lansoprazole one month ago, no change though. Thanks though x

[Sara_2611 in reply to Suzie42]

Im on that now as well

[Suzie42 in reply to Sara_2611]

Have you had any problems with it?

[Sara_2611 in reply to Suzie42]

No it's been ok + they're gastro resistant aren't they? I've had no side effects at all what sort of issues have u had

[Suzie42 in reply to Sara_2611]

I have been getting indigestion, burping and a stitch like pain in my left side near my waist

[Seaairlover in reply to Suzie42]

I was on lansoprazole a few years ago. It worked well but after a year my joints were really stiff and I had difficulty getting up and starting to move. My hair also fell out. Luckily after coming off everything returned to normal. I’m now on esomeprazole, I’ve been on it for several years with no side effects.

[Suzie42 in reply to Seaairlover]

Gosh that was grim....perhaps I should change

[Nicholatracy]

wonderful news 🐞

[Suzie42 in reply to Nicholatracy]

Thank you

[Germantara]

Pleased for you good news

[Suzie42]

Thanks

[Hazel-mary]

that’s brilliant news Jill. Xx

[Suzie42]

Thanks Hazel, yes I was chuffed 🤣xx

[Tawny10]

great news

[Suzie42 in reply to Tawny10]

Thank you

[Bonchops10]

That’s such brilliant positive news, I’m so pleased for you. Have a fab holiday and hope you feel good throughout. It’ll be great to have a reduction in medication for a while! Have fun. X

[Suzie42 in reply to Bonchops10]

Thank you very much, yes hoping the reduction of meds also brings my appetite back ! x

[Mellywelly]

Hope you enjoy your holiday chook, you deserve it. 😉

[Suzie42 in reply to Mellywelly]

Thank you 😊

[Souielouie]

Brilliant news 😃 Enjoy your holiday that is medicine in it’s self 🥰🕶️☀️🇬🇷 xx

[Suzie42 in reply to Souielouie]

Thank you 😊🤞

[Alberta56]

It's good to hear good news- cheers me up. Hope you have a lovely holiday in Greece and that the pains go away. xxx

[Suzie42 in reply to Alberta56]

🤞Hopefully it all goes well, thank you xx

[suef]

Fantastic news Suzie. Have a brill time on your hols. Xx

[Suzie42 in reply to suef]

Thank you so much xx

[Hidden]

Great news enjoy your holiday

[Suzie42 in reply to Hidden]

Thank you

[Izb1]

Its so nice to read good news and what fabulous news this is for you Suzie. Have a great holiday and hope you feel even better when you return x

[Suzie42 in reply to Izb1]

Thank you. So many lovely comments. I haven't put anything on for ages as been feeling low, so onwards and upwards now 😊👍x

[Izb1 in reply to Suzie42]

Sorry you have been feeling low Suzie but am sure you will feel on top of the world when on holiday, it will do you the world of good. My daughter did a slot in Cyprus and I spent a couple of weeks over there in late September one year and it was still blinking hot but a lovely dry heat. Have fun x

[Suzie42 in reply to Izb1]

Thank you so much. The holiday will certainly give me a boost I'm sure xx

[BreatheasyBe]

Hi that’s great news have a fab holiday and try to relax and not worry as I’m sure any additional stress doesn’t help with the lungs.

[Suzie42 in reply to BreatheasyBe]

Thank you and I'm sure your right with stress 😊

[Musicalways]

Wow Suzie42 what fantastic news for you and for us. When one is happy we are all happy. Enjoy uour break 🙂

[Suzie42 in reply to Musicalways]

Thank you very much 😊

[Karenanne61]

Great news!

[Suzie42 in reply to Karenanne61]

👍Thank you

[Numptybrain]

That’s brilliant, shame about horrible side effects, but if it’s helping lung function that’s definitely a plus.

[Suzie42 in reply to Numptybrain]

Yes, I'm hoping it's the side effects and not something else, but shall stay positive for now 😊

[Sara_2611]

Hi Suzie im on Nintedanib too & all my lung function tests have slwsys been very low I have 2 sprays Ventolin & serevennt. When going to a lung function test i have to have the smallest blower they have because the bigger onenmaked me gag so i dont like doing them

[Suzie42 in reply to Sara_2611]

Hi, I am now on Pirefidone as Nintedanib gave me horrid side effects. I think when my consultant changed me from Fostair to Trimbow last summer my breathing improved asthma wise. I used to get peak flow of 300 max but now get 390.I hate the lung function test but luckily doesnt make me gag

[Timberman]

I have COPD (Emphysema) and my lung function is 32%! So be happy and confident!

[Suzie42 in reply to Timberman]

Thank you and poor you, are you on oxygen? I hopefully will be ok for a few more years, but it will worsen eventually

[Maverick77]

Hi suzie42 so glad you shared this as I recently had a lung function test and I haven’t had results yet so I don’t know what to expect. This gives me something to think about. I’m so glad you got good results. xx

[Suzie42 in reply to Maverick77]

I hope you have good news, always anxious to wait. Xx

[Deep-Purple]

Excellent news!

[Suzie42 in reply to Deep-Purple]

Thanks