I’ve lost all independence

Christine talks about how her life has changed since feeling breathless 8 years ago.

Tweety had been part of my family for 20 years before I had to give her away.

I first noticed I was very breathless about 8 years ago. I’d been unwell and wasn’t recovering at all. My GP just told me to ‘go home and rest’. That wasn’t good enough for me. I saw another respiratory doctor, who sent me for a bronchoscopy test the next day.

Tweety

My bird, Tweety

The results showed that I had an allergy to birds. I was hospitalised for 10 days and was only allowed home on the clear understanding that my husband removed our pet bird, Tweety.

Because we’d owned him for so long, I found it really difficult to believe he was the cause of my ill health. But we donated him to a bird sanctuary - and after 3 months of sickness, I returned to work feeling much better.

I could walk up 3 flights of stairs to the office without having to catch my breath.

I didn’t really appreciate how ill I had been, but was just grateful that it was being sorted at last. I certainly didn’t realise the implications it could have on my health in the future.

My symptoms returned

About 5 years later, I started to feel the same again. I put it down to being overweight, and it took me 3 months to see my GP.

I insisted on an X-ray. It showed severe worsening inflammation and scarring in my lungs. I was referred to a respiratory specialist at hospital, who told me the inflammation could be treated – but the scarring was irreversible.

My lungs are only functioning at 27% of what’s normal for my age.

I was diagnosed with a type of pulmonary fibrosis called hypersensitivity pneumonitis. It’s an inflammation of my lung tissue which also causes scarring. Because of this, my lungs got stiff and less able to take in oxygen when I breathe.

It means there’s a build-up of scar tissue in my lungs, which makes them stiff and less able to take in oxygen.

My lungs are only functioning at 27% of what’s normal for my age. And I have to return every 3 months to check if my disease is stable, or if it’s getting worse.

My consultant thinks that although we gave Tweety away, my immune system still thinks I’m under threat from the bird allergy.

Everything is different now

Christine Scott PF

Me, earlier this year

Life has changed dramatically.

When I go out, I have to plan all my journeys out very carefully. I need to make sure I have enough oxygen with me – and some spare in case I run out. And I get really breathless walking up the slightest of inclines – even with my oxygen to help.

I can’t go out by myself, because I can’t manage on public transport with the oxygen I’m using and the spare too. But if I see friends and family, I need to check if anyone has a cough or cold. For me, a cold could easily turn into a chest infection with the risk of further loss of lung function which would be very serious for me.

I struggle around the house too. I have to rely on someone else to help me cook food - moving my oxygen cylinder around while handing hot pans and trays is too dangerous. Housework is out of the question, because stirring up dust affects my lungs. I’ve had to remove all my carpets for similar reasons.

A different future than planned

When I think about my future, I feel depressed.

I thought I’d live into my 80s like my friends and family. But now even if I’m lucky enough to get a transplant, I’ll be lucky to see 70.

Having this awful disease has meant I’ve lost my independence.

Everything I do is either a struggle because of how little lung function I have, or difficult because I need to make sure I’m not losing any more.

So I am hoping that I will be fortunate enough to get a lung transplant. This may not lengthen my life but would definitely give me a much better quality of life.

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Comments

Christine says: "I have to rely on someone else to help me cook food - moving my oxygen cylinder around while handing hot pans and trays is too dangerous. " Christine could have an oxygen concentrator supplied by her NHS oxygen supplier, which uses electricity to filter the oxygen from the air and sits on the floor in another room with a 30ft long oxygen tube. I have a concentrator and can move anywhere in the house with no trouble and easily do the cooking.
My husband diagnosed with C.O.P.D.12years ago with 27pc use of lungs he found diaphragm breathing helpful and lived a good life till heart affected don't give up. Join B.E.group.
I have such empathy  for Christine,having a similar  condition myself.    It is very difficult  not to get very depressed  on occasions when you realise  that physically  it's  impossible  to do even the simplest household chore,enjoy a walk,or meet up with friends and enjoy the freedom and independence  that you once had. Quality not quantity of life is my belief,I hope in the future that I can make that choice. 
All that I can say to this brave and unfortunate lady is keep faith and live your life as fully as you can.

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2 September 2016