Wendy Dirks

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]

Hi, Charlene –

Before I was diagnosed with PF (I have hypersensitivity pneumonitis), I had several clots in both lungs after a history of DVT. I basically slept for two months and was barely awake and sitting up for another month. Afterward, one of the clues that there was something else wrong was the complete change in my sleeping habits a year…[Read more]

I have done pulmonary rehab 3x and now attend a follow up class. It was a life changer for me I can’t recommend it highly enough.

Oh, Susan, I feel for you! We finally had to hire a gardener but I still try to do as much as I can.

I am trying to get as much exercise as I can. I’ve been through a six week pulmonary rehab course 3x now and am now going to a follow up class. My problem is that afterward, I am completely exhausted. I generally come home and take a nap, anywhere from 2.5 to 4 hours! This week I was very active – I did quite a bit of gardening on top of a session…[Read more]

Hi, Daryl – Thanks so much for this tip. I will speak to my consultant about it when I see him in August. I’m always a bit ambivalent about adding yet another medication – I feel like a walking drugstore at times! I’ll see what he says. Best wishes, Wendy

My coughing fits when I laugh are downright scary. Thanks for responding – I’m going to ask my consultant at my next appointment.

I am devastated to read this. I had been thinking about her and wondering about her for weeks since she went for her transplant. Her passing is the second this week – the first lady of Israel, Nechama Rivlin also died this week of PF, also following a transplant a few months ago. I’m so terribly sorry although I know she was a woman of deep faith…[Read more]

Oops, just realised I haven’t shared any positive strategies, just complained… sorry.  I do try and meditate more or less regularly. 🙂

I read the tips from NIH but to be honest, it’s pretty difficult to be told to be active, spend time with friends, etc., when you can’t walk more than a few feet without stopping to catch your breath. I know I need to prioritise exercise more than I do – I can go swimming, or to a follow up class post-pulmonary rehab, or a wonderful chair yoga…[Read more]