@wendy-dirks
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Wendy Dirks replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 23 hours, 5 minutes ago
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]
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Wendy Dirks replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 23 hours, 7 minutes ago
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]
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Wendy Dirks replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 week, 1 day ago
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]
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Wendy Dirks changed their profile picture 1 week, 1 day ago
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Wendy Dirks replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 week, 1 day ago
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]
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Wendy Dirks posted a new activity comment 1 week, 2 days ago
A good day is one in which my coughing isn’t too bad and I’m able to enjoy my hobby, go for a walk, do a zoom yoga class and feel like life is fun and enjoyable. I find that I often have days like that. Having supplemental oxygen makes it possible and some days I hardly know I’m ill while the oxygen is flowing.
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Wendy Dirks replied to the topic Hypersensitivity Pneumonitis (a variant of ILD similar to IPF but less severe) in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 weeks, 4 days ago
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]
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Wendy Dirks replied to the topic What Are Your New Years Resolutions? in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 2 weeks ago
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]
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Wendy Dirks replied to the topic What Are Your New Years Resolutions? in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 3 weeks ago
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]
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Wendy Dirks replied to the topic Dad was diagnosed with IPF in the forum Canadians Living with Pulmonary Fibrosis 3 months ago
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]
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Wendy Dirks replied to the topic Do others with IPF cough for 20 minutes every morning? in the forum Living with Pulmonary Fibrosis: 50+ 3 months, 2 weeks ago
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]
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Allan Byron and
Wendy Dirks are now friends 4 months, 2 weeks ago
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Wendy Dirks replied to the topic We Should Be taking Precautionary Measures to Avoid the Flu in the forum Pulmonary Fibrosis Awareness & Advocacy 4 months, 2 weeks ago
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]
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Wendy Dirks posted an update 4 months, 3 weeks ago
Once again, I am unable to post or reply to comments in the forums, even when I sign in.
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Wendy Dirks replied to the topic Making Exercise Easier: Tips From a Pulmonary Fibrosis Patient in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 months, 4 weeks ago
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.
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Wendy Dirks replied to the topic Making Exercise Easier: Tips From a Pulmonary Fibrosis Patient in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 months, 4 weeks ago
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.
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Wendy Dirks replied to the topic Making Exercise Easier: Tips From a Pulmonary Fibrosis Patient in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 months, 4 weeks ago
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!
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Wendy Dirks replied to the topic Post thoracotomy intermittent painful muscle spasm. in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months, 1 week ago
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]
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Wendy Dirks replied to the topic Food aversions & loss of appetite in the forum Diagnosis Information and General Questions 6 months, 1 week ago
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]
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Wendy Dirks replied to the topic Food aversions & loss of appetite in the forum Diagnosis Information and General Questions 6 months, 1 week ago
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]
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