Wendy Dirks

Hi, Bob – I’d like to know the answer to this as well. I’m having a major battle with the local community oxygen team who refuse to give me a second flask so I can have one ready to go when the one I’m using runs out. They don’t believe I can be active enough at home to need one and it’s infuriating. Once we get out of shielding and lockdown, I’d…[Read more]

Hi, Marianne – Just to offer a bit of reassurance, I had an echocardiogram last week. When my consultant told me she was ordering one, I had a moment of panic, thinking that something must be wrong with my heart, but she reassured me that this is just standard practice for people with lung disease. It’s just their way of taking good care of us.…[Read more]

Hi, Marianne – When I started on oxygen I only used it during exertion – my pulmonary rehab class and gardening. However, as lockdown progressed here, my lung function declined quite rapidly and my oxygen sats were going down into the 70s. I started on MMF (Cellcept) and increased oxygen around the same time – 4/5 months ago and by Christmas both…[Read more]

Hi, Marianne –

I began using supplemental oxygen about a year ago, using gas cylinders at 2 lpm. It wasn’t enough and I was reassessed and changed to 4 lpm. A small cylinder lasted about an hour. I began getting physiotherapy, taking online yoga zoom classes and getting fitter which meant I began using more and more oxygen, running out quickly,…[Read more]

Dear Sunder,

I also have chronic hypersensitivity pneumonitis. I wouldn’t say it’s less severe than IPF, rather that the progression is slower. Many of the symptoms and medications are very similar and I’ve found lots of good advice here from people with IPF. I was diagnosed about two years ago but it had been clear for the several years prior to…[Read more]

Thanks, Char – These kinds of discussions are extremely difficult but also important. I’ve been getting palliative care. I noticed another post about it elsewhere but the first thing we did was discuss my wishes. I’m getting wonderful care including physiotherapy and counselling and it’s so helpful. It’s funny thing – I am at the point that my…[Read more]

Hi, Charlene – I think the only resolution I can make is to save money for my natural burial site. I’m hoping to be buried in a biodegradable straw coffin without embalming along with my son’s ashes and the ashes of the two beloved kitties who came to the UK with me 14 years ago. I want a tree to be planted above us. I have looked into the cos…[Read more]

Hello, Vishal – My dad had IPF 30 years ago and now I have another form called hypersensitivity pneumonitis. My symptoms got a lot worse during the first months of the pandemic and when I told my consultant that I was depressed and worrying about my own death she referred me for palliative care. It has been life changing. I go for physiotherapy,…[Read more]

Hi, James – I don’t have IPF, but a different form of PF – hypersensitivity pneumonitis and I also cough for some time after I wake up in the morning. I occasionally have horrendous coughing fits during the day and then when I lie down at night as well. I use ambulatory oxygen only. I am receiving palliative care along with my care from the…[Read more]

Hi, Mark –

Interesting question about fevers! For many years I have avoided anything that reduces a fever as our immune systems work better at higher body temperatures than normal. Only if I am desperately ill or my body temperature has reached dangerous levels will I take anything or if the fever is accompanied by unbearable headaches or other…[Read more]

Thanks, Mark! I’ve been practicing yoga for almost all of my adult life and as my illness began to interfere with my ability to exercise, I was afraid I would have to give it up. It’s wonderful to have a modified practice.

PS I was supposed to begin physiotherapy this week as part of palliative care but the covid-19 cases in England and especially where I live are out of control again. I’m pretty disappointed.

I am doing a “Trauma Sensitive Yoga” class 2x a week via Zoom. It’s perfect because it deals with emotional issues and techniques for dealing with them as well as gentle movement.  I highly recommend online gentle or chair yoga classes with teachers trained in accessible yoga or trauma sensitive/informed. Great stuff! And singing!

Hi, Marsha –

This isn’t particularly helpful, but I wanted to share with you that I have really painful muscle spasms under by breasts fairly frequently. I have never had any surgery of any kind there although I broke my ribs several years ago. I also get terrible spasms starting in my mid-back that radiate around under my arm and end under my…[Read more]

Karen, I never feel guilty when I eat chocolate! It’s just a pleasure!

On a more serious note, that’s one of the nice things about intuitive eating – if you give yourself permission to eat whatever you want, after a while you discover that you don’t really want to overindulge in anything. I used to avoid buying ice cream and then occasionally buy…[Read more]

Hi, Rene – I have hypersensitivity pneumonitis and my appetite has been diminishing steadily as the disease progresses. I think it is probably due to the oxygen required for digestion rather than any medication as I have only recently (3 weeks ago) started any medication for my illness. The food aversions did start after I started CellCept (MMF).…[Read more]