Wendy Dirks

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 gen…[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 thr…[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 care.…[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 help…[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 o…[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 l…[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 to…[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 addressed…[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 and…[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 w…[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 tel…[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!