I have had 2 attacks of Recurrent Cryptogenic Organising Pneumonia COP in the last few years. My lungs are OK at the moment, but I know if it recurs I will need high doses of steroids to treat it. I know need to take great care because of my likelihood of suffering severely if I develop Covid19 but I have not received a letter indicating I am a vulnerable patient.
I am a retired doctor with a family history of pulmonary fibrosis so I know the risks.
Clearly this is a rare condition and not recognised by computer algorithms. I have practiced scrupulous social distancing and have not been shopping for groceries. I managed to get a couple of supermarket deliveries at the beginning of this crisis but now nothing. I have tried to register with the Government, with Sainsburys, with my GP. None can help. I don’t want to bother the specialist at the hospital.
How can I get groceries delivered? I don’t want to put other people at risk by getting my shopping.
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Dewbuc
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Hi Dewbuc, there is a new hub starting that can help people with difficulties, give them a call 08002346123 I think it is worth trying, if not please ask a neighbour for help with food shopping as you really dont want to be going out, try to take care of yourself and dont be afraid of asking for help x
Thanks. I just phoned the number. It said it was Manchester City Council, not an emergency helpline, does that sound right to you? It is only open office hours Monday to Friday so I can’t get a response today. Thanks anyway.
Sorry Dewbuc the email came in from Manchester City Council, I would imagine that all councils are bringjng this in, you could either check on gov.uk site for your area or phone the number on monday and ask them for a contact number x
I’m so sorry to hear that you’re struggling to get supplies.
I too have had COP and have been in remission for 2 months, believe that my lungs are clear currently but was warned that chances of recurrence are fairly high and have SOS arrangement to contact consultant if any symptoms return as would then need high dose of extended steroids. I have some lung damage including mild bronchiectasis as a result.
Have been told by GP this week that I’m very vulnerable but appear not to be on the list. I too am by myself. I’m not interested in ‘the badge’ of being on the list but feel more vulnerable about support if I do become ill.
I am shielding anyway.
I am fortunate to have a couple of friends able to get supplies for me (at the moment) and a nearby local farm shop put up a box for me each week that someone collects and leaves outside my house.
I realise that may seem like putting them at extra risk but people want to help and are still shopping themselves too ,,, now that stores are only letting in small numbers of customers at a time it has reduced the risk somewhat between people at least and the stores are now quite well stocked.
Suggestions for other support for you:
- call consultant’s PA to make them aware of situation and concerns
- any contacts or neighbours at all who could either collect supplies for you or who may know of any other local arrangements
- contact Age Co. uk .. they have telephone lines to offer and find local support
- contact local authority to see if local volunteers scheme set up
- search online for smaller farm shops or smaller local stores deliveries as there are some setting up deliveries that don’t normally deliver
- online health supply shops can deliver quite a lot or dry stores although not fresh and veg
- phone local butchers / local greengrocers and explain predicament as they may deliver too.
I’m sure that you will already have tried some of these avenues but hope my response helps a bit.
Thank you so much for your kindness. I think we probably have enough support around if I’m unable to manage with the practical day to day issues.
I’m really sorry to hear you’ve only recently recovered.
Was this your first episode? When did it start? I only ask because some cases of coronavirus have presented as COP and there is some thought that the virus has been around much longer than we think. It would be great news if you had in fact had it already and recovered. When the antibody test becomes available you could find out. Once you’ve had the virus you could be a little more relaxed and just have to worry about the COP recurring.
On that score, I have had two episodes one four years ago and one two years ago and my lungs and lung function returned pretty much to normal although I have a cough, shortness of breath and wheezing very regularly. I’ve been told that it is very likely to recur again and that I should have a high resolution CT scan as soon as I think it’s starting again and to start high dose steroids ASAP if the CT shows COP.
I hope you get through this nightmare. Your message has been very helpful to me.
I originally was diagnosed with pneumonia after being taken in to a&e last June. Had 5 antibiotics over 4 mths not getting better and still with shadows. GP / radiographer decided not to retest as I hadn’t been a smoker .. was told I had post pneumonia exhaustion. In Sept I insisted on a further chest X-ray which indicated COP.
Oct I saw resp consultant, COP confirmed and put on steroids ... realised in retrospect and new knowledge that I’d had symptoms much earlier than June and that it had appeared to ‘start’ all over again in Aug with chills and fever. I’d even said this to emergency GP at that time! Consultant thought I’d probably had it twice over the period.
It cleared quite quickly and apparently fully over a 3 month course.
I still have a cough sometimes, discomfort under right breastbone and some breathlessness .. have been put on a preventer inhaler since due to low peak flow.
That’s a very interesting piece of information about COP and COVID.....
interesting too that I have worried that the COP returning now would be diagnosed as COVID as so many similar symptoms! I never had an extended very high fever last time ... more the chills and night sweats.
Sorry I just lost a very long reply. I will try again.
First instalment in case I lose it again!
My first attack started in the Autumn 4 years ago. I was breathless, wheezing and coughing especially when I laughed! I thought it was late onset asthma.
It became much more severe and I finally went to the GP. Respiratory function tests suggested pulmonary fibrosis. (My sister has pulmonary fibrosis and is bedridden as a result.)
He started me on a salbutamol inhaler which didn’t do much to help. By Christmas I was really unwell my oxygen was down to 92 % and he started me on an antibiotic and oral steroids. I stayed at home because my husband is a doctor and could manage the situation until the hospitals were back to normal after Christmas.
Because I had breast cancer 12 years ago there was a fear I had diffuse metastases in my lungs so I saw a respiratory physician and had a high definition CT scan that confirmed a diagnosis of COP. It responded rapidly to high dose steroids which I took for 6 months on a reducing schedule.
I had been exposed to Red Tide on a holiday in Florida just before the symptoms started and it was thought likely that triggered an abnormal immune response and caused it.
The second attack occurred two years ago just before Easter. There were lots of tree pollens at the time - a pollen bomb. I have had slight wheezing for some years for about two weeks when some trees are flowering. We were due to go on holiday to a Jersey and thought the sea air would be helpful. I discovered a lot of pollen blows there from France so my symptoms got much worse. I couldn’t stop coughing and literally though I might die.
I took hay fever medication and used a steroid and salbutamol inhaler to no effect. We phoned the consultant and I saw him within a few days. A high definition CT scan confirmed the diagnosis and once again it started to improve dramatically with high dose steroids.
I was prescribed Fostair and took the high dose oral steroids by mouth for a month or two. I then had a very nasty fall, tripping on a raised pavement slab and had dreadful face wounds and massive bruising on my legs. The steroids have thinned my skin and the healing was slowed by them. I was advised by the plastic surgeon to see if I could stop steroids.
I discovered a research article for a French Orphan Disease organisation which reviewed COP patients across Europe who had to discontinue steroids prematurely for health reasons. The COP sometimes recurred but quickly subsided if the steroids were restarted so I stopped them over a few days with no problems and no recurrence.
I have been prescribed a month’s course of high dose steroids and advised to have an immediate high definition CT scan and start them immediately if I can’t be seen by my specialist. It’s hoped that by treating quickly a shorter course of steroids will be sufficient.
I use Fostair on a when necessary basis but otherwise have no treatment now.
The fear is that because we don’t know what causes it, nobody really knows how to avoid a recurrence. Certainly Covid19 wouldn’t be helpful!
I’ve only just seen your post. I am still a hospital patient and received my shielding letter from the hospital, which put me on the council register, who phoned me the day after I received the letter
I had already registered myself on the government website, if you think you are vulnerable even though you don’t seem to fit the criteria, and of course COP isn’t mentioned as it is so rare
My husband has received a similar letter which came from the GP surgery and he’s registered on the government website too
So you could register, there’s no penalty for getting it wrong! and I might help with shopping slots
Not sure if this is any help. I
I’ve been ill for a year now, and on steroids for about 10 months. I am currently taking 7 mg prednisolone, and am supposed to get an X-ray at the end of May, for the next plan, but I’m guessing I might not have the X-ray now, so will just have to wait and see what my consultant says
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