Wendy Dirks

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]

💚💚💚

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]

These are all excellent suggestions. We have our first case in the city where I live and I am worried. I expected it, to be honest. Great Britain is a relatively small island when it comes down to it. I have a CT scan scheduled at the same hospital where the patients are being treated in a special unit. I saw my consultant a week ago and raised…[Read more]

Thanks, Charlene – I seem to be able to post now for some reason. And I’m happy to hear you’ve been travelling – that’s so important for you, I seem to recall from some of your posts.

Sadly, I think cutting down on outings is the only thing we can do. I haven’t worried too much about stocking up on things as I figure if I get it, I will almost immediately be hospitalised. The survival rate for people with chronic respiratory disease is 92% but I wonder if my lungs will be so damaged that even if I survived it, I’d be far more…[Read more]

I am so sorry this has happened to you. I don’t know where you live, but here in the UK, an Asian man was set on yesterday and beaten in the street while people shouted “We don’t want your coronavirus here.” This ridiculous anger and fear is completely unwarranted. I would definitely contact the shop where it happened and speak to the manager.…[Read more]

Reply To: Corona virus
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