3+ months in hospital, Organising Pneumonia with fibrosis, and umbrella ILD diagnosis, non smoker, previously healthy, future outlook? Sharing my dad's story. In England.
Hi community,
I'm sharing my dad's story here in hope someone can offer some hope, words of wisdom, or share their own experience. We are in the UK.
Summary:
Diagnosis: Organising Pneumonia, ILD umbrella, with fibrosis.
Dad's age: 68
Before illness: Incredibly healthy, never smoked, no risk factors, previously would go on 10 mile hikes.
Time in hospital: 3 months
Time in ICU: 17 days
Weight lost in hospital: 16kg
Drug Treatment: The Drug Infusions: Cyclophosphamide. The Steroid Tablets: Prednisolone. The Lung Scarring Prevention: Pirfenidone.
Dad's Story
3 months ago my dad was sick with a cough, exhaustion and fever and was sent to the hospital by his local doctor as they believed he had a nasty bacterial pneumonia and his oxygen saturation was alarmingly low. They tried over 4 different antibiotics but his breathing was not improving and after 2 weeks in hospital he was admitted to intensive care and put on a ventilator for 7 days. When on the ventilator, the doctors pivoted strategy, diagnosing him with Organising Pneumonia and administering industrial level steroids via injection, alongside proning him on his front for 12 hours at a time. He responded to the steroids and proning, and was able to come off the ventilator and onto high flow, and was then given a tablet form steroid called Prednisolone.
10 days after he came off the ventilator, he got moved from icu to the respiratory ward for 3 weeks, before being discharged with oxygen. When he came home he was extremely immobile and weak, needing oxygen and a walking frame to move between rooms. Climbing up stairs could take 10 minutes as he had to have breaks to catch his breath.
After 10 days at home, an ambulance was called as his oxygen sats dropped really low. This was after the doctors told us to reduce the number of Prednisolone tablets he was taking from 6 to 5. I have read that it is common to see a relapse in OP recovery when tapering steroids too early.
He went back to hospital 7 weeks ago, and he is still in hospital today (29/06/26). The doctors believe he has an ILD, with fibrosis, as the CT scans are showing ongoing inflammation, and scarring, which he didn't have when he was discharged from hospital the first time. We are told this is a 10 in a million illness, and my dad has an incredibly rare form of it.
He is now being given two specialist drugs: Pirfenidone, which should halt and prevent further lung scarring, and an immunosuppressant called Cyclophosphamide.
Where we are today
Opinion varies greatly regarding dad's prognosis. The latest CT scan is showing no change since before he was given both specialist drugs, which is a positive sign as it shows the drugs have halted the progression of inflammation and scarring. One doctor actually believes there is a small improvement on the scan.
When he was first readmitted to hospital we were told there's a "50% chance" he has an aggressive pulmonary fibrosis, that he may deteriorate rapidly and the only option would be end of life care. That was 5 weeks ago, and since then, Dad's requirement for oxygen has reduced and he is being weaned off high flow onto a face mask. He is getting into a chair for a few hours every day too. We feel we have beaten the 50% chance odds of rapid deterioration, but what next?
Some doctors feel he may always need oxygen, some feel he will need oxygen but only in the medium term, some feel he could be housebound, some tell us that people with lung scarring can still play tennis, the spectrum of recovery feels incredibly wide. He will need months of rehabilitation to be able to build up his strength again and put the weight back on.
It is also hard to put his breathlessness down to his lung damage vs his extreme muscle wasting and deconditioning as a result of being bed bound for 3+ months.
Please share any words of wisdom
Has anyone experienced something similar, do you have insights to share?