pulmonary fibrosis

[crilleyjp]

I have recently been diagnosed with the above after being in hospital with pneumonia and chest sepsis. I was treat with intervenous antibiotics three times a day, then discharged after five days with no advice help or support, is this usual. I have lost a stone in the last year the hospital did not weigh me on the way out I was discharged in pain and told it was probably caused by the way I was sitting. I am 57 years old unemployed and feel as if I am fading fast.

[Pantani]

You need to see your GP and get a referral for xrays and a Ct scan and an appointment with a consultant so you can establish what stage you are at. You will also get medication to help you cope. Also a referral for pulmonary rehabilitation which will teach you about exercise and diet. If you are really struggling cale the British lung foundation helpline as they can give you support.

[Helen6]

Hi Crilleyip, I have idiopathic pulmonary fibrosis. With this condition you are normally under the care of a consultant, with regular (3 or 6 monthly) appointments. It is important that you are in this process as you may be eligible for drugs aimed at slowing the progress of the disease and you are also checked to see if you require oxygen. Presumably the hospital will communicate with your GP. I would make an appointment to find out if the hospital have set this process up. To be diagnosed with PF, you must have seen a consultant whilst in hospital. Unlike other lung conditions, ongoing steroids or inhalers are not used but it is important that chest infections are treated promptly so as to avoid further lung damage. For this reason, it is usual for your GP to prescribe 'rescue melds' to keep at home and take at the first sign of infection. I would mention the weight loss to your GP as they may be able to help with that.

Take Care,

Helen

[Sonny22]

Hi crilleyjp

Like Helen i have IPF and PAH the best advice i can give is what Helen and others gave to me, keep positive no negitive thoughts, eat well, exercise, live well and live long, i was first diagnosed last May and have just received a letter from my consultant to say i start my clinic trials for Perfenidone/Nintedanib at Nottingham University Hospital January 11th, so keep the spirit up mate and you will be OK,

sonny22

[Adrie1945]

Good morning. I too have PF. MY recommendation is to maintain as healthy and active lifestyle as YOU can manage. Do NOT be afraid of pushing yourself out of your comfort zone. Treatment does seem to be so variable. I have had this awful disease for about eight years, see my Consultant regularly, either two or four months but always have a pathway of contact if I need her advice. Take Mucodyne, Prednisolone daily and use a nebuliser. I have to say the breathing is now deteriorating but not low enough for me to be eligible for Perfenidone. It would appear that, that help is only available when one is beyond all the advice I have just quoted!! Hope this was of interest.

[Maureenpearl]

HI, I have Lupus which has caused Pulmonary Fibrosis. I was told this in 2007 and I lead a fairly normal life with ambulatory oxygen since 2013.

I have a Rheumatologist and a Pulmonary consultant. I see both together at one clinic. I have regular CT scans, Lung function test and chest X-rays along with all the other blood test for the lupus.

Please do not feel down hearted and I'm sure your GP will arrange for you to see the right consultant if the hospital hasn't already done so for your follow up appointment.

At the moment I am attending Pulmonary Rehab to help keep my muscles and heart strong.

All the best.

Maureen 🙏🏽