Wendy Dirks

Hi, Marilyn – Starting antifibrotics earlier is something for which the UK charity Action For Pulmonary Fibrosis has been advocating for some time. I don’t know why the guidelines were set up as they are. Maybe David knows. Best wishes, Wendy

Hi, Charlene –

I think almost everyone who has a form of PF has experienced trauma on some level. I feel extremely lucky to have an amazing counsellor as part of my palliative care team. In fact, all of my palliative care team are wonderful, but having counselling has been particularly helpful. We meet for an online session every week and she…[Read more]

Thank you, Ann, for responding. The disease is incredibly unfair.

Hi, Charlene –

My illness is progressing and I spent a lot of the holidays contemplating whether 2022 will be the last year of my life. I was born in 1952 so it has a nice rounded ring to it. My first resolution is to make sure that I have everything covered in terms of end of life practicalities. Next week I will be ringing up the natural burial…[Read more]

Hello, All –

I had an appointment with my consultant yesterday and I am one of the patients who will be eligible for Ofev as soon as it it rolled out for people with non-IPF interstitial lung disease next month. He told me that there are so many patients in need of it that they are still working out the logistics of getting everyone started and…[Read more]

Interesting! It was, however, precisely because I am already immunosuppressed that my consultant didn’t want me to use a steroid inhaler. This may not hold for every form of PF however.

Hi, Christie –

I am an animal lover and have had pets all of my life. When I moved to England in 2006 from the USA, I had to bring my two young cats with me, particularly as the quarantine laws had dropped to meet EU regulations. They adapted beautifully to becoming British kitties and lived to ripe old age. I have their ashes and intend to have…[Read more]

Hi, Liz – My consultant told me to stop using mine. I was misdiagnosed with asthma and used them for years but they never really helped. I have hypersensitivity pneumonitis so I can’t speak for other kinds of PF.

Dear Lori –

I am so sorry to hear how you are suffering after your own diagnosis and so much loss. My father died in 1989 of IPF, just three years after he was diagnosed. My son, who died last year at age 43, had multiple sclerosis, along with other issues that affected his health. I was diagnosed with a different form of PF, chronic…[Read more]

Thank you, Marianne! I haven’t tried any over the counter nasal sprays. My main problem is postnasal drip which aggravates my cough terribly. So the steroid in the spray is to stop the inflammation in my nose rather than the dryness. Apparently sore throats are the most common side effect from mometasone spray. Knowing it doesn’t help!

I hope if…[Read more]

I should be clear that the study (referenced above in the original post) was in transplant patients taking mycophenalate so if you aren’t taking it, you may be protected as Mike is – congratulations, Mike @mikemoses

Hi, Mary @blessed and Christie @christie-patient –

I did have some issues after the second dose of the Pfizer vaccine. My oxygen saturation dropped and I had a routine appointment 5 days later. The nurse was very concerned about my breathing and I had lung function tests that indicated a decline. However, I felt better after a few weeks and a…[Read more]

Hi, Alejandro –

It’s difficult to answer the question of whether any particular form of oxygen is “good.” They are all good depending on the circumstances, in my experience. I began using oxygen cylinders and they met my needs at first when all I needed was oxygen for going out. But eventually I was using more and more oxygen and had to have…[Read more]

Okay, that worked, fingers crossed this will too. Char, thank you so much for sharing your experience and Christie, thank you for your concern. I’m better mentally today and the oxygen nurse is coming tomorrow so fingers crossed I will get a change in prescription.

I have not been formally diagnosed with an AE as I am waiting for a CT scan but m…[Read more]

Hi, Char and Christie – I have not been able to post for two days – I just get an error message. This is a test.

Thank you, Sue – This is the first exacerbation I have had like this so it’s really been a shock. My lung function had been declining, then stabilised and then suddenly, almost over night, my condition completely deteriorated. It’s been a complete shock and really difficult to get my head around the fact that even if they manage to get it to…[Read more]

Thank you, Christie, and for checking out the blog! Yes, it is definitely a labour of love. 🙂

I got my second dose of the Pfizer covid-19 vaccine on Sunday and I also have been listening to my body. I cancelled my physiotherapy session yesterday and my yoga class today due to fatigue. I feel as if I need a self care “re-boot” and today I plan on doing that by resting, showering, meditating, and maybe doing some yoga on my own. My other big…[Read more]