My favourite moments this year are hard to define as almost the entire year was spent in hospital or hospice care. I guess I have to say the last two months when I was at home and refused to go back into hospital. I’m now in hospice care and being treated to make me comfortable as I am now dying and the consultant thinks that time is short. I… Read more

There is a grief support counsellor at the hospice where I receive palliative care. She helped me immensely in dealing with the death of my son, my only child, at age 43. Afterward, I started CBT with her for managing my own grief as I have moved closer to my own death. The one thing she said to me about my own death was asking what it was… Read more

I feel I belong here and am supported although my form of ILD, chronic hypersensitivity pneumonitis, is also rarer than IPF. There are a few other members here with CHP so I’m not the only one and my dad had IPF so I know what we have in common and what is different. I’m sorry that anyone feels unsupported and wonder if anyone has found more… Read more

My happy place remains my doll room, the 1:6 scale village in our loft. My blog continues at https://dirksdolls.wordpress.com/blog/ but I’m no longer able to build complex dioramas. Some of my dolls celebrated the Queen’s Jubilee while I was whisked off to hospital with the blue lights going and sirens blaring with what they considered life… Read more

I loved pulmonary rehabilitation and was actually in a promotional video distributed to GP surgeries to encourage participation. The lockdown during the pandemic closed our class down. It was so much fun to exercise with others in the same boat. During lockdown I continued working with a physiotherapist one to one as part of my palliative… Read more

Hi, Chris – I’m so glad to hear you have good days and hospice care. I understand the frustration of not being able to do what we could once do and also the relief of being able to express it. My family, colleagues, and friends do not want to hear about it when I talk about my death while I find it empowering to talk about it. I wish I could… Read more

And the sound of Mr Blackbird singing outside my window!

Let me add to this conversation that 3 months ago I was admitted to hospital and during the first 24 hours it wasn’t clear that I would recover or leave alive. I did and that alone is enough to make me enjoy every breath I take. My loving husband, my cuddly cat, my devoted friends – I have so much for which to live and be grateful.

I know it’s not for everyone, but I meditate daily and do gentle chair yoga, both of which help enormously to keep me positive. I keep a gratitude journal as well. Through my palliative care team, I’m getting online cognitive behavioural therapy (CBT), which is great for dealing with unhelpful thoughts and self compassion. I don’t know if any… Read more

Hi, Linda – Just saw your husband is getting palliative care too. Wonderful!

Chris, are you able to access palliative care? I’m only able to get from chair to bed to chair now but am in the process of sorting a wheelchair. Palliative care has changed my life!

Hi, Linda – My husband is my carer and I know how hard this must be for you. I am now using 5 lpm at rest and 10 lpm when moving. I have two oxygen concentrators downstairs and two upstairs so that it is relatively easy to adjust the flow rate. I’m in the process of getting a wheelchair set up. Yesterday my husband and I went for a walk with a… Read more

I’m so sorry you have had to deal with this, Char. It sounds incredibly difficult. While I was in hospital with pneumonia in March, my sister-in-law was in hospital with lung cancer. She died and I didn’t and  I realised I felt some survivor’s guilt. I couldn’t go to the funeral to support my husband because I don’t have enough portable oxygen… Read more

Dear All –

Thank you for your concern and kindness. I really appreciate it. I was in hospital for two weeks this time and once again feel very grateful to have been there. I didn’t wait as long this time as I did in March to realise I needed help. I learned some interesting things about my illness and my oxygen needs are finally being… Read more

Hi, Christie –

One of the consequences of my illness has been putting on a tremendous amount of weight as my ability to move decreased. I grew up in a culture that despises fat people and I had to spend a lot of time learning to love and accept myself as a fat woman after being thin and fit all my adult life. I discovered Heath at Every Size… Read more

Hello, Friends –

Once again I am in one of the respiratory wards at the RVI and am being treated with antibiotics and steroids. Unfortunately, my oxygen saturation began to plummet again and my fatigue came back as my steroids tapered off. I don’t know whether to call this my second AE in 2 months or consider it the same event popping up like a… Read more

Hi, Michael – That’s a tough one. I put off telling my adult son immediately but after a couple of months I realised I had to do it. Since my dad died of IPF, my son knew immediately what the outcome would be. Unfortunately, he died before he got the chance to see me while I was still alive. Neither of us expected that. I think it’s best to… Read more

Hi, Karen – It was levofloxacin, first via drip, then orally.

That’s wonderful to hear! I hope he continues to improve.

How wonderful that you got your transplant so quickly! I’m not a candidate for one but it’s wonderful to hear others are benefiting. I hope you continue to improve and do well.

I’m so glad Esbriet is working for you. I have CHP (chronic hypersensitivity pneumonitis) rather than IPF and Ofev has only recently been approved for use for CHP here in the UK. I hope I’m able to manage it. Fingers crossed!

Thank you, Jerry! I’ve been on oxygen support of some sort for two years now and because I live in England, all my health care is “free.” I need oxygen 24/7 now and have a concentrator at home with tubing that reaches all over the house, even upstairs. I hope your pneumonia has cleared up and you continue to enjoy life!

Hello, everyone!

I just want to let you know that I am home, feeling better than I have in months, and my biggest challenge at the moment is not to overdo it, at which I am dismally failing. I’m exhausted today after tidying up my bedroom yesterday, which had a collection of clutter driving me crazy when I was relying completely on others to… Read more

Thank you, Char! I feel better every day and am able to get around more as well on less oxygen so I’m feeling very optimistic. A week ago I could barely move at all and today I achieved my mini goal of walking myself unaided to the bathroom dragging a big oxygen tank on 12 lpm. The simple joy of being able to wash my hands in soap and water… Read more

Thank you so much for the kind words and encouragement, Christie. I feel better and can do more every day. It’s good to know AE outcomes are more variable than the gloomy literature I’ve read, but I am sorry to hear about your mother.

Greetings from the Royal Victoria Infirmary Respiratory Ward, where I am hospitalised with an AE and pneumonia. Apparently it is a type of pneumonia that goes along with an AE in ILDs.

Last week at home, I felt so awful that I thought it had to be the beginning of the end and if being alive meant feeling so awful, why prolong it. I went… Read more

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… 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… 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… 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… 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,… 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… Read more

Hello, all –

I haven’t been very active here over the summer as I have been dealing with a lot of medical issues and haven’t been very well. But I am here now and curious about how people deal with side effects. I have CHP, a somewhat different form of PF than many of you, and take mycophenolate mofetil. I think a few people here have been… 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… 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… 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… 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… Read more

Hello friends –

I had a routine hospital appointment last week for a blood draw that ended up being bad news. I had suddenly become very breathless, low oxygen saturation, and was coughing really badly for a week or so beforehand and I thought it was just a minor blip. However, the nurses were alarmed at my breathlessness as soon as I arrived… Read more

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… 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… Read more

Hello, friends –

I know this topic has probably been discussed here before but for the last couple of days, my symptoms of fatigue have increased dramatically. I know from past experience that episodes of fatigue come and go but this particular episode is really debilitating. Does anyone have any advice on how to get through an episode… 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… Read more