Wendy Dirks

This year I found putting up the Christmas tree very stressful. We finally took it off its stand so it was not very tall, and I sat in a chair to decorate it. So here’s a tip – have a small tree! I have to admit that I cried my eyes out but now the tree looks lovely and I’ve already recruited a friend and her small child to help next year. Kno…[Read more]

I’m glad you got a laugh out of that! 🙂

Thank you, Charlene, and especially for the recognition that accepting oxygen is a big step. I know my friends are all trying to be upbeat and positive, but sometimes we need to have someone recognise how traumatic it is to reach the next step in treatment. Everyone keeps telling me how great it is that I’ll be on oxygen so I can do things I…[Read more]

This is all very interesting for me because when I went for my 3 month checkup today, the consultant told me that my lung function was stable enough for her to defer putting me onto MMF and instead she would send me to be assessed for ambulatory oxygen. She told me I wouldn’t need it when I was sitting or resting but it would make it easier for me…[Read more]

Thanks, Mark – I don’t know what I’d do without these forums! I get so much information here and it is really appreciated.

I have my next appointment at the hospital in less than two weeks and one of the things I want to discuss is my cough. I’m not sure what “chronic” means in this context, but I have intermittent spells of coughing that have become so severe that I’m getting muscle spasms afterward around my rib cage. They are very painful. I’ll see what the consultant says.

Wow, Linda – I’m super impressed with your dedication to exercise! I’m afraid I don’t exercise regularly enough at all any more. It feels as if there just aren’t enough hours in the day and I know I should make a greater effort because it’s so important. You’ve inspired me!

Hi, Mark – I don’t think I have any pain associated with my PF but I do have arthritis that bothers me occasionally. I really feel for Linda, who posted earlier. I have had scoliosis all my adult life and kept my back pain under control with yoga, which I practiced regularly for over 20 years. My breathlessness and coughing have meant my yoga…[Read more]

Hi, Nan – I really feel for you. My father died of IPF 30 years ago and at the time his doctor told us to be very vigilant about our lungs because they didn’t really understand the underlying genetics very well. My own case was complicated because I had pulmonary emboli following a DVT after surgery for a broken ankle. I just didn’t recover and…[Read more]

Thank you, Lorraine. Learning about and practicing self-compassion has been a life saver for me, even before my diagnosis. It’s such a blow to learn we have something so debilitating. I’m due to begin immunosuppressant medication soon and when I asked the doctor if it would make me feel better, and she said no, I felt so deflated but she said…[Read more]

Thank you, Lorraine! I will definitely check out that website. I can’t seem to figure out how to upload photos, but if you go to the link in my first post, you can see loads of my photos.

Oh, Lorraine, I really feel for you. I’m glad you’re getting out a bit more and I hope that counselling will help. I feel sure that it will. It’s difficult not to feel grief for ourselves in this situation and I think it’s perfectly normal to do so. There’s a wonderful practice from Dr Kristen Neff, a mindfulness and self compassion advocate and…[Read more]

Thank you, Mark!

I’m struggling a bit right now. I am definitely living my life but I’m feeling very torn. To explain – and since we’re here in hobbies – I have a crazy hobby that I really love. I say crazy but there are literally thousands of us out there doing this. I collect 1:6 scale fashion dolls, like Barbie, but many others as well, and have transformed one…[Read more]

Hello, everyone – I saw one of the team at the Interstitial Lung Disease Clinic yesterday and my hypersensitivity pneumonitis continues to progress so the next step will be treatment with mycophenolate alone, without prednisone. The doctor spent a long time explaining the possible side effects and the need for close monitoring. She also told me…[Read more]

Thanks, Mark – I’m one of the British Lung Foundation’s stars in their pulmonary rehabilitation videos that play in doctors’ offices! 😂 I go to a “Healthy Lungs” followup class but this summer I have been inundated with research deadlines and spent way too much time sitting and staring at computer screens. 🙁

https://youtu.be/LIxfiDcE_L4

Thanks, Mark! I’ve heard that before about prednisone and I will discuss it again if my lung function declines. Over the last year my appetite has decreased remarkably but so has my activity and so my weight remains the same. I’m hoping that my lung function hasn’t declined much over the last three months and I can carry on as usual for now. I fin…[Read more]

My father was on prednisone for some time with IPF 30 years ago. My doctors won’t put me on it because I am fat and they don’t want me to gain any more weight. I’m back at the hospital for lung function tests tomorrow and a meeting with my consultant. I’ve been told that if my lung function declines again, I’ll have another scan and the next step…[Read more]

Hi, Charlene – I don’t use oxygen at all yet but I wonder if it would help me sleep less! At the moment, my medical team thinks my illness is progressing slowly and aren’t doing anything except monitoring me and encouraging me to exercise. I use a steroid inhaler but that’s about it. I hope you manage to find a solution. I can’t imagine how I…[Read more]