PF ????

[longlungs]

Hidehi peeps just a quickie from me

As I sit here and wait for my tea

I do read your posts everyday

Im in a dark place and have had little to say

When the gloom does knock my door

I retreat inside,quiet,as many times before

Many of you I know feel the same

Now what and who can we say we blame

I first blame the weather

Cos its nice & I wanna go hell for leather

But the bits in the air set off a tickle

Making me cough until my tears trickle

My brain just loves the warmth of the sun

But not my lungs they struggle so no longer fun

No energy to clean

On the sides I do lean

Back to my table

Where I sit and feel able

So I answered my phone

My daughter,something is wrong could tell by her tone

"My doctor has told me I have PF!!!!??

WHAT,OMG FFF !!!

Wake up Jane reassurance needed

She's only 30 advice needs to be heeded

So Im reaching out for that chink of light

Positive thoughts now in my sight

I find out its the GP thats diagnosed and had his say

Can this be done by just an exerray (xray oops sorry)

Ive told her to wait until shes seen the consultant

I'm furious,angry, sad and need to rant!!!

So Ive come here with my tale of woe

Hoping that all you can help me for a mo

With any information re pulmonary fibrosis

So I can help my darling girl with this bliddy diagnosis !

Well thats all for now folks

A smile a day helps you work rest and play and so do Mars bars

Breathe easy now

Janexxx

[eightyplus]

Hi longlungs!

You have summed the way most of us feel quite neatly, but so sad when we see our children suffering similar illnesses and still not learning from our ravaged bodies.

Hope your daughter gets well soon.

[longlungs in reply to eightyplus]

Hi eightyplus thank-you for your reply.Yes hearing what the doctor said to her blew me right out of the water was not expecting that at all have never been concerned with her chest in particular,she has suffered sob for sometime but this we were told was due to her anemia that she suffers with.I suggested she ask her doctor to refer her to the Brompton hospital as her local one is not all that.I guess we play the waiting game now.Hope your keeping well Janexx

[pergola1]

Feel for you, L.L. but I see a sense of humour lurks with you. My chest infections have been scared off by the sea air of Hampshire and the azithromyci. Just as well because my best friend and husband is so ill - this is why I dont post so much. xx

[longlungs in reply to pergola1]

Ah thanks pergola,Im glad your feeling lots better thats brilliant,but sorry to hear about your Brian,enjoy every moment you can the two of you. Janexx

[scrobbitty]

Oh bummocks, feel for ya girl xx Don't get in a tizzy though, that never solves anything. I know there are some peeps on here with PF who will be a mine of information for you and of course, if in doubt give the BLF Helpline a buzz; they are excellent.

In the meantime, grab a Mars, put your feet up and reward yourself with chill time. xxx

[longlungs in reply to scrobbitty]

Hi scrobbitty yes I shall give them a tinkle next week.Just a bit shocked about it all to be honest.Its the one time im hoping for a mis diagnosis.Do hope the wait for cons appt is not long,coz our imaginations run riot in the mean time.Are you well at the min scrobbs? Janexx

[scrobbitty in reply to longlungs]

I can well imagine the shock, chuck, the not knowing is far worse but ever the pragmatist, try very hard (Bailey and Baileys will help a little) not too worry too much.

I'm really quite okay at the moment, exasperated cos of broken toes which hurt far more than I'd bargained for (whisky coffees are far more effective than paracetamol to be honest) but otherwise doing fine.

Chin up lovely, we're all thinking of you xx

[Hidden]

Hi Jane so sorry to hear about your daughter. I agree - call the helpline. I know nothing about PF but am sure others will be on tomorrow who do. I really hope you start feeling better soon coz I miss you xx

[longlungs in reply to Hidden]

Hi coughalot Im the same know nothing about the condition so will speak with blf next week.Im ok Im a survivor but the lows are a blimming nuisance for sure.What about yourself ? Janexx

[Toci]

Jane I am so sorry to hear of your troubles, both your own health and your daughters. I know little about PF but I am sure others will help. Love and thoughts. x

[longlungs in reply to Toci]

Hello Toci nice to hear from you thank-you.Its early days with my girl takes a while to sink in will feel better once she has seen consultant and go from there.My health is not bad just low moods which can be difficult but I do know that it will improve at some point. Hope you are keeping well yourself ? Janexx

[qbjb]

All of the above from me too. x

[longlungs in reply to qbjb]

Hi qbjb thank-you we will get there its the shock at the min as lung problems were never an option or so we thought.Thanx for caring. Keep well Janexx

[qbjb in reply to longlungs]

Thank you. What a life ... take care, Jude xx

[junespoon]

Yes really feel for you and your daughter Jane. we only want health and happiness for our children,Sure the BLF will answer your questions, thinking of you both xx

[longlungs in reply to junespoon]

Hi Junespoon your right when she told me my stomach did a triple sulco,lifes a biatch sometimes eh.Oh well we will get there for sure.Hows you keeping at the moment? Janexx

[dall05]

Hi Jane, I do hope that dark place your in brightens up soon and fires up those rays of humor your so good with.

I have Pulmonary Fibrosis which their pretty sure now has been caused by a thing called Anti jo-1 positive, some weird immune system problem where I started attacking myself. Dum eh' . It seems PF has many causes but it will help your daughter if they can identify the cause and then give the correct treatment. The quicker this is done the better as there are many different treatments. I'm on Mycophenolate and Prednisolone with a good dose of exercise thrown in which seems to be keeping things stable.

Tony xxxx Hope you enjoyed your Mars bar King Size with a bit of luck

[longlungs in reply to dall05]

Hi Tony nice to see you, Im a survivor and know my depression will improve at some point a right pain when its with me though.Yes I did read there are 200 variations of PF and their causes.yes I hope she doesnt have to wait to long for an appt at the Brompton.Does PF have a long life span like copd?Glad all things are stable with yourself Tony you keep yourself that way. Janexx

[hufferpuffer]

I hope you start feeling brighter soon, you must be so worried about your daughter, but you are right about keeping positive and I hope the consultant will be able to explain a bit more about the PF than the GP. Thinking of you both and sending hugs , huff xxxx

[longlungs in reply to hufferpuffer]

Hi Huff thank-you.Yes although the news is nasty its woken me right up need to try and be as positive as I can cos thats what is needed takes my mind off me which is a good thing.Loving the hugs Huff hope your well Janexx

[Suzy6]

Oh so sorry Jane. We never want anything to happen to our children and would go to any lengths to protect them. I'm absolutely sure you will be able to support your daughter in your usual steadfast way. Us Mums are like those toys when you push them over they bounce back. You will both be in my thoughts and prayers. xxx