Wendy Dirks

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]

Thanks, Mark! Yes, we all need to do what we can and what we enjoy as long as possible.

For me, it is definitely showering. As a result, I shower less frequently than I did and developed a new routine. I try to shower every other day and I don’t use all the products I once used. I try to be quick and efficient. I put a mirror on my desk and sit down there to do my hair and facial skin care. I rarely use makeup since I don’t go out…[Read more]

Most of the time I accept where I am in this process of dealing with my disease. Sometimes I get down thinking that what I’m dealing with is the process of my dying, which is true, but it’s also the process of living, because dying is the normal and natural end to that process. Mostly I am cheerful and happy. I don’t go out much anymore, as…[Read more]