Wendy Dirks

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]

Hi, Christie – This is my blog with all my dolls, dioramas, and stories. Best wishes, Wendy

I finished building the playscale (1:6 scale) pizzeria in my doll room today and it looks fabulous!

Thank you everyone for your responses! It’s so wonderful – and so important – to have this space where we can share our thoughts with people who understand. And I have heard about the book you mention, Steven – I may have to give it a read one of these days!

I am not religious although I meditate regularly, which helps me keep focussed on the present instead of worrying about the future. To be honest, my palliative care team and my yoga teacher really help me a lot. My son died in 2020 and my physiotherapist referred me to the bereavement counsellor at the hospice. Because of the pandemic, we talked…[Read more]

Hi, Augusta – I have a different form of PF (CHP), but the symptoms are similar. My coughing has been steadily getting worse over the last couple of years and is worse when I get up and just before I go to bed. I also cough when I laugh or sometimes when eating. At this point, the coughing can rapidly turn into convulsive, gut wrenching episodes…[Read more]

Hi, Christie – I bought Dr Porges’ “big book” but I haven’t read it yet. Over Christmas I read “The Pocket Guide to Polyvagal Theory: The Transformative Power of Feeling Safe” and it was absolutely life transforming. I highly recommend it!

Hi, Christie – I have done yoga all of my adult life so adjusting my practice as my illness has progressed has been an ongoing process. I found my current teacher before the pandemic and attended in person gentle chair yoga classes. After the pandemic started, she (Sally Roach, here in the UK) began teaching Trauma Sensitive Yoga via Zoom. I’m a…[Read more]