Pulmonary Fibrosis Patient to Patient - Lung Conditions C...

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Pulmonary Fibrosis Patient to Patient

lungho•

12 years ago•9 Replies

Any PFI patients out there. Lost two lobes (Bi Lobectomy) and high dose radiotherapy on remaining lobe.

I need to talk to real people and give the doctors and consultants a break.

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lungho

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Radiotherapy

9 Replies

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Puffthemagicdragon12 years ago

Hi Lungho. Great username !

I don't have PFI but there are a few with your problem on here. I'm sure they'll be along to chat soon.

tanyamarie12 years ago

Hi my dad had IPF, sadly passed away after Christmas but if i can help in any way, just ask xx

Gidge12 years ago

My husband has what is thought to be familial PF. Chat away.

maggie4412 years ago

I have lung fibrosis, caused by an auto-immune prblem.

Maggie

sandmartin• in reply tomaggie4412 years ago

HI - I too have pulmonary fibrosis due of Sjogrens Syndrome - seem to cough a lot too! Ah well always someone else worse off,

maggie44• in reply tosandmartin12 years ago

Hi sandmartin

The autom-immune problem causing my lung fibrosis and pulmonary htpertension is Sjogren's syndrome. This is first time I have 'met' anyone with sjogren's as cause.

Maggie

sandmartin• in reply tomaggie4412 years ago

I am not too sure how many of us there are, but it is nice to know someone else has it! Not too pleasant at the moment but like everything there are always highs and lows and the best thing to do is keep smiling! I joined the BSSA but they never seem to mention the lung problems. Anyway keep smiling Maggie

12 years ago

I too have pulmonary fibrosis and saw the X rays for the first time last Wednesday. Had to giggle at my husband when he said 'that doesn't look too bad, I can see both lungs very clearly.' Both black. I'm on the chemo route, cyclophosphamide (finished) and now waiting to begin cycle of retuximab. Lots of steroids etc. Also on oxygen 24/7 high concentrations and flows. I have stamped my foot and will not be put out for any treatment. I refuse to be ventilated. You can talk to me anytime as well. I am real stubborn and do no feel unwell most of the time.

mary1956• in reply to11 years ago

Hi How long have you had IPF for? I've just ben diagnosed and have no idea what lies ahead. I'm on prednisolone and waiting to see Consultant regarding possible other treatment.