Wendy Dirks

Pulmonary rehab is fabulous and I once was interviewed for a British Lung Foundation video that promotes it in doctor’s offices around the NHS. It’s very clear that my PF has progressed while in lockdown and I just had a series of medical appointments confirming this. I am sure I am also less fit than I was because of not going to my pulmonary…[Read more]

Dear Sita,

You are a very kind and loving person to care for your mother that way. What you say makes a lot of sense and I understand now. I’m sure a social worker can help you all make the appropriate decisions especially if you find one that is aware of the cultural differences. But I agree with Susan Howitt – it doesn’t sound as if she needs…[Read more]

Has your mother’s physician spoken to her? I’m somewhat shocked to think he has had this conversation with you without telling her. I personally would be very upset if my doctor spoke to my husband about hospice care and other end of life issues without speaking to me first. I’m 67, not much younger than your mother. The principle of informed…[Read more]

I should also add that I discovered that having ILD is a risk factor for PE, just as having two prior DVTs is. It still irritates me that nobody could connect the dots, just see a fat person sitting in front of them. I’m not alone in this kind of experience and it is infuriating. And no, I’m not going to diet, which is useless and works in less…[Read more]

It took five years for my diagnosis of hypersensitivity pneumonitis and even that was accidental. I had PE five years ago and that took several weeks to diagnose. First I was told my breathlessness was because I was fat. I went home and went on an exercise binge and a week later I couldn’t walk and my lips were blue. Then I was diagnosed with…[Read more]

Hi, Jon – I also have chronic HP but I am not yet taking Cellcept. I was due to have a CT scan and complete lung function tests last month to determine if I was now a candidate but because of the pandemic, the appointments have been postponed indefinitely. I live in England and here everyone who is considered extremely vulnerable to Covid-19 is…[Read more]

Hi, Michael – Thank you so much for posting this. It sounds really intriguing! I’m also interested in what you say about immunosuppressants. I’ve been very nervous about starting them with this virus raging. I’m considered “extremely vulnerable” here in the UK, which means I am “shielding” at home until the end of June. I’m feeling a bit depressed…[Read more]

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I’m doing great. I’m actually astonished at how calm and safe I feel. I never thought I would feel blessed to have PF but I do.

Part of the reason for this is the UK’s response. It took time to implement, but everyone with interstitial lung disease (among other diseases) are “sheltered.” We are to stay at home in total lockdown for 12 weeks.…[Read more]

Hi, Susan – I have tanks delivered to me that fit into a backpack or a little trolley. I’m barely using oxygen at the moment, however, as my husband and I have been self isolating for over a week and I don’t need it a lot at home. We are now in total lockdown in England. I am spending my days organising food and medicine deliveries. Good luck!

Thanks, Mark! I am less worried now as we enter day 5 of self isolation and neither my husband and I have any symptoms. Now it’s all about hunkering down and dealing with life at home only for a minimum of 3 months, according to our PM, who frankly, is not the most reliable source in my opinion. I’ve been super busy organising grocery deliveries,…[Read more]

These are extraordinary times we are living in. I don’t think any of us could have predicted this back at the beginning of January. I hope that you remain safe and indeed, everyone in our community remains safe. My husband is 74 and both he and I have begun self isolation in advance of an expected directive from the government for us to do so in…[Read more]

Hi, Mike – I do hope that you are a candidate for a transplant. That would be a very positive step.  It sounds as if you made a sensible choice about coming home early. Best wishes, Wendy

And as to not touching my face – ack, forget about it! My nasal cannula always needs adjusting and because of my extreme allergies to the entire world (I have hypersensitivity pneumonitis), my eyes are always weepy and crusty – I have some sort of chronic allergic conjunctivitis and although I use prescription eyedrops, they don’t always prevent…[Read more]

I am engaging in social distancing by not going out – but I hardly go out anymore anyway. My husband is 74 and in reasonably good health and acts as my carer. He plays bridge every week and I am really nervous about it. They are supposed to get hand sanitiser for every table by the end of the week. It’s his only respite as a carer and I don’t want…[Read more]

Hi, Char – Sorry I wasn’t very clear. I’m going to go ahead and get my CT scan and attend all my hospital appointments as I normally would until the Chief Medical Officer tells us differently. I told my consultant that I didn’t want to start on MMF (CellCept) until there was a vaccine and she simply concurred. I think further discussion will come…[Read more]

Hi, Muhammad and others on this thread – Coughing fits are so annoying! I tend to get them at bedtime for some reason and sometimes cough until I have muscle spasms around my ribs. Strangely enough, the only thing that helps is honey. I keep a bottle of honey next to the bed now. I take a teaspoonful to start and hold my head back so it goes down…[Read more]

One more thing – I have washed my hands until they are raw! I have a thick cream that is prescribed for my legs – I have post-thrombotic syndrome on one leg and require thick paraffin based cream and a support stocking. But I have only recently started oxygen and was told to be very careful about flammable substances on my hands – like paraffin -…[Read more]