Pulmonary Fibrosis
colinone
Member Posts: 1,039
Have any of you guys developed PF i was diagnosed with it last month any positive feedback woulod be most welcome.
Colinone
Colinone
0
Comments
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Sorry colin i cant help with this but saw your post and just wanted to say hi and wish you all the best.
hope someone else can help0 -
I have Colin, how can I help?
Dolittle0 -
Hello dolittle, tell me as much as you can please
How long have you had it
what stage is it at
have you found anything that helps
do you sleep ok
do you need to use 0xygen
did you get it through the arthritis or medication or what
Thanks
Colin0 -
Hi Colin,
Have got your message. Will post about it later today - have to go sort my ma out with some pipe lagging! That's got you thinking, I sure!
Dolittle0 -
Hi Colin,
Got a bit more time now.
I have RA. I’d been on my meds for 6 years with no checks other than bloods. Two years ago I rang my rheumy nurse and said I had breathing problems. Did wonder whether it was the ‘flu – it was February and everyone had colds. She told me to stop my meds. but that I would only be off them for a few weeks. I think they did a chest X-ray, but nobody discussed results. I was off meds. for 22 months. They gave me another med. which knocked me flat so they were stopped. GP put me on steroids which I still take. I’ve had no inhibitor meds. since, but started Humira 5 weeks ago, after changing to another consultant. I don’t need to use oxygen. That’s the background.
My GP gave me an inhaler and arranged for an LFT at the surgery. Result was I didn’t need the inhaler. Saw a chest physician had chest X-Rays. They found some fibrosis. Due to appraisal for Humira had an intense CT scan for TB because of past contact and TA/BT jabs given for my job. Have now had two LFTs 9 months apart, the results of which have been the same. They are not ‘normal’ but didn’t cause panic, so I presume that it’s not all that aggressive at the moment. They say if treatment should be necessary it will be with an increase in my steroids. I will be seen again in 3 months.
My chest felt a bit ‘tight’ the other day, so I went to GP to ensure I didn’t have a chest infection. He gave me an LFT and said if I blew 150 he would be pleased. I recorded 340, so I was pleased. I wheeze a bit sometimes and tend to gasp now and again, something like asthma (but I must also bear in mind that I have a leaking heart valve, so that could be the cause of the gasps). He said the PF could have been caused by irritants I may have worked with (aircraft fumes etc), RA or other things. He also said idiopathic means ‘undetermined’. I have a productive cough but the sputum is not green.
So in a nutshell: I’ve had it about 2 years. I don’t use oxygen. I sleep OK now since I bought a memory foam pillow. I have asked whether it is the meds. or the RA but nobody will give a straight answer. I find a particular oil with a very pungent aroma helps to clear my ‘tubes’ (don’t think I’m allowed to name it here but will PM you if you want to know – it works for ME). I could sing with the baritones first thing in the morning but this eases off during the day. Strangely I have found chewing gum helps! I was very upset and worried when they first found it but have decided to just accept it as part of things. I found the people at the British Lung Foundation reassuringly helpful.
Don’t know whether any of this is useful or reassuring, and I’m sorry it’s turned into an epistle. If there is anything else I can tell you, please do say so.
Best wishes
Dolittle0 -
dolittle thank you so much it must have taken an age for you to write out your a real help.
yes please PM me with the names of anything you can anything is worth a try.
Simula story to yours RA and Pa for some years now gone through all the drugs including the anti TNFs starting on Rituximab in March. I got Pneumonia begining of July last year, Heart attack 18 July had one stent in August and another December just gone.
Notised problem with my breathing on recovery about August last year but its now gone worse. Get out of breath very easy just getting dressed or shower, No cough yet but hey i'm sure i'll get it.
I was Diagnosed two weeks ago and told it was 40% damage only realised this week how bad it can get so like you at the moment scared but hope to get past that soon. I had to stop Cardiac Rehab because it became to much for me but i'm doing ok not all doom and gloom and plenty of stuff to accupy my mind.
You have been a real help thanks so much take care and hop-e mums pipes turned out OK
Colin0 -
Now THAT was a good reply eh Colin?
Toni x0 -
Hi Toni
Yes thats what you call a reply, I'm really scared at the moment so it was a great help. Take Care
Colin0
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