Covid Lungs week 8 plus plus

[AndsLee]

Hope this has worked... Welcome all.

It was a most odd collection of symptoms. First symptom tickly throat (and I kept running out of air when talking so took an involuntary gasp). I sound like a complete weirdo but can’t describe it very well.

It all came on exactly 7 days after mixing with a lot of Chinese students (in MacDonald’s!) in a university city well known for foreign students. Everyone was coughing - well it was January so I thought nothing of it.

Like someone had removed my lungs. That's a good description of my second week in.

Odd is certainly the word for it.

There was nothing to inflate when I breathed in. Halfway down my windpipe was a “closed” sign. It was the weirdest thing. Had to stay awake to focus on breathing, really concentrating - truly thought if I nodded off my body would forget I had to inhale.

This bit was short lived admittedly.

And the throat noises - like the morning after an extreme night on the fags. Could have called bats with the high pitched noises emitting from me.

Oh and the rattling windpipe - like a 1890’s ancient bit of plumbing

@kitcat122 I think a swab test is unlikely to be positive after so many months. You could try an antibody test but they are coming back negative for many/most people with prolonged symptoms. Did anyone else you know catch it from you or the students, out of interest?

Thank you for all the kind messages - I am just home from hospital with lots of anticoagulants and several clinic appointments to come.

To those who asked about diagnosis, I initially had an upright chest x-ray which showed a pleural effusion. In order to identify whether that was due to pleurisy or pulmonary embolism I then had a CT pulmonary angiogram (CTPA) which uses IV contrast to obtain a clear image of the pulmonary blood vessels.

@MillStone the left-sided clot is new (acute) and the right-sided one is further along in the healing process and thought to be a couple of months old. I will be on anticoagulants for at least 6 months, maybe much longer. The lung changes noted are ground glass opacities and areas of consolidation - which as I understand it are very often seen in Covid but which can also be caused by other lung diseases, including the emboli themselves.

@Egghead68 I can’t remember if anyone else in the family had cold symptoms at the same time. No one mentioned they felt odd. Winter is just one cold after the other for us though so I wouldn’t have thought anything of it.

Hi
I thought I would pop in and update. This week did a full weeks work three days at home on line and 2 days looking after key worker children. Tonight I am exhausted and I hope that this does not mean another dip. All week arms and wrists and back have ached, My back is underneath my shoulder blades very occasional SOB and some stabbing pains around my sternum. Still have the brain fog especially with peoples names for some reason. I also get a sore throat which comes on and then goes and the intermittent cough is still there. I am going to spend the weekend resting. So I am further forward than I was but still not myself. Glad to hear some of you are improving and really feel for those of you still suffering,

Really good it was diagnosed and you are now getting the right treatment @LarkDescending.

Wow that is exhausting to read @Meercatmama. Fingers crossed you don’t dip and you can catch up on rest for a couple of days.

I was going to write a longer post today as it’s been really good to hear others’ experiences coming in, but had a really bad couple of days for me, mostly in bed with sore chest and bad fatigue. Now awake with arm and shoulder pain

Wanted to post this though which has just come out. A Chinese study showing rapid decline in antibodies in recovering/recovered Covid patients.

www.cidrap.umn.edu/news-perspective/2020/06/chinese-study-antibodies-covid-19-patients-fade-quickly

Sorry about your bad days @Whatapickle78. Thanks very much for the interesting article.

@LarkDescending gosh, hope you're feeling okay. Great that you're getting some thorough and continued support and thanks for the info.

@Meercatmama wow!

@Whatapickle78 sorry, hope you're feeling better this morning. Thanks for the article.

@LarkDescending, thank you for updating us and so glad that you're getting the right treatment and follow up. I'm also worried about pleural effusion but have had two chest X-rays which have been clear - I have a nagging feeling something has been missed though as my upper back pain on breathing is so searing. Could be neurological though also.

@Meercatmama, good you have been working this week but be careful - I know it's difficult with teaching but can you go on shorter hours until the end of term?

Hello everyone, end of week 12/14.
I managed 700 steps yesterday.
I am able to lie on my sides and front for a little while comfortably now.
I am always hungry
I think things are beginning to move very slowly in the right direction. I think my systems are all on high alert still.
I’ve had one of my blood tests back, my heart doesn’t appear to be stressed. I still have to have the echo and the recording thing, just in case, but hopefully there will be no lasting damage.
My immune system is still screwed though, I discovered a verruca on my foot last night! I haven’t had one of those since my teens.

An itu dr who had long covid write a letter to Natalie Bennett.

https://lookaside.fbsbx.com/file/Long-term%20COVID%20Letter%20to%20Baroness%20Bennett.pdf?token=AWz0nDl6C33wW-DxrVDT4PVZBRuMe9j7sLOl8ZWjwcZtzn5wKLaB9i1jhq7n2GA7ULtW0MVfmhZWd--Q6F7tWP5dme5gzJxQZ1YHH8vtBuDMfLFPCAEo8KHET4WrMVVFXT5YtR1tlg8UaSQlEPzFhG51l5LbYK0CUczkK3Bj6C5HquG6ErcLA-qq9VTTiwhD59icWW6oOl9EfamAXJcqP_

Hello everyone. It's taken me a long time to think about whether I want to discuss this issue in public, and yesterday I decided that I do. Some of you will know that I have been unwell for nearly 13 weeks now. I am an intensive care doctor who was working in ITU in March. It has been a very difficult time. I have certainly improved a great deal from where I was 3 months ago, but I am still finding normal daily life a challenge and am unable to work still. Slowly, I have realised that I have not been alone in this struggle. There are many people suffering in a similar way. As a doctor, I feel that I have a responsibility to help bring this to the attention of politicians and the medical and scientific communities.
Baroness Natalie Bennett, Former Leader of the Green Party and Member of the House of Lords, asked written questions in parliament about this issue on 18th June 2020 and I am hugely grateful to her. My MP, James Wild MP for West Norfolk, has also raised the issue with Public Health England and the Department of Health. I am posting a PDF of the letter I sent to Baroness Bennett, which sets out my thoughts on the situation, in case it should assist her in raising the issue in parliament.
I would like to share it with you all here so that you may send it on to your MPs or other politicians, or to anyone else that you think might benefit from reading it, including employers, family and healthcare professionals. I feel that a PDF of a letter to a Baroness from a doctor may help you avoid the “facebook says” trap.
I think it’s really important that we all write to our MPs as soon as possible. Momentum is starting to build, and many people here are doing great work to raise awareness. This is something that can be done in 5 or 10 mins, and is really likely to have a great effect if we all do it.
I would like to call on the government to:
1)Establish a scientific approach to the study of patients undergoing prolonged COVID-19 symptoms to:
a)Establish the number of people affected (this will include both PCR positive confirmed AND suspected cases
b)Investigate the cause of this (this may involve selecting a cohort of PCR positive patients suffering ongoing symptoms to study further)
c) Investigate possible treatments.
2)Raise awareness amongst health professionals so that treatable pathology is investigated and ruled out. Provide information and guidelines on how to manage long-term COVID19 patients as the situation becomes better characterised.
3)Raise awareness amongst employers.
4)Consider the medical, psychological and financial support that may be required by these patients.
5)When considering measures to ease the lock down, include a consideration of the risk of exposing additional people to prolonged COVID-19 symptoms and long-term health consequences
Please email your politicians. Feel free to copy the body of my letter and my calls if you agree with them, but most importantly please do contact your politicians with whatever words you feel most comfortable.
I will also be sending other letters to the Royal College of GPs and Royal College of Physicians, and have already written to my MP, the Royal College of Anaesthetists and the BMA. As the number of infections increases, the significance of #LongCovid and #covid1in20 is only going to increase, and if it affects between 5 and 10% of us we will all know somebody affected soon. I would like to thank everyone for their support over the past difficult period and the wonderful work that we are all doing. I wish you all a speedy recovery.

roness Bennett, Long-term COVID-19
Sent by email 19th June 2020
It is becoming increasingly clear that a significant number of people are being left with ongoing symptoms of COVID-19.
There are thousands of stories available on social media of people suffering
symptoms for 12, 13, 14 weeks and longer. The facebook groups “Covid-19 Support
Group (have it/had it)” has 8,435 members at present and “Covid-19 Support Group
#covid1in20” has 3,341 members at present. On twitter the hashtags ”#LongCovid”
and “#COVID1in20” brings up many more stories of prolonged illnesses. Multiple
newspaper articles have now been published detailing the personal stories of many
11
It is not clear what is causing these prolonged illnesses. The symptoms appear to be indistinguishable in many ways from the symptoms of an acute SARS-CoV-2 infection. Fever, dry cough, tiredness, shortness of breath, gastrointestinal symptoms, rashes, visual problems, headaches etc. Many people report having had improving symptoms before relapsing. Others report the emergence of new symptoms as time goes on.
It is unfortunate that the public health infrastructure in the UK has not been able to scientifically study the natural history of COVID-19 thus far. The number of patients recovered from COVID-19 is not reported in government statistics12 and this has
13
What if these symptoms represent a chronic infection with SARS-CoV-2 in a relapsing-remitting fashion? What if these patients are still contagious? A case report from China documents prolonged PCR positive status in a patient who recovered
14
1-10
extent of the problem, and is suggesting that 10% of patients are having prolonged
Dr Tim Spector’s COVID-19 symptom tracker app has clarified the
symptoms
centralised approach to studying what is happening to these patients. 10% of confirmed cases would represent nearly 30,000 people in the UK having prolonged symptoms, before considering the many cases that have not been confirmed by PCR test.
patients.
. This data is very valuable and should encourage a more in-depth and
been identified as a problem by prominent epidemiologists
focus has been on the acutely ill but it is now time to get to grips with this hidden catastrophe that has hit many peoples’ lives.
. If these studies were replicable, it would
after receiving convalescent plasma
surely lend credence to the possibility of persisting infection? It should certainly warrant further investigation and trials. There are papers demonstrating that not everybody makes neutralising antibodies to SARS-CoV-2. In this paper15, 10/175 patients that had been confirmed positive cases with PCR (approximately 6% or ~”1 in 20”) did not make antibodies. Younger patients had a higher chance of not producing antibodies, to an extent that was statistically significant. The role of antibodies in immunity is not clear at present, but the possibility of persisting infection in some individuals warrants further investigation. The interaction between the immune response and SARS-CoV2, and the role of antibodies, needs to be investigated in this cohort of people suffering long term symptoms in particular. In
. Understandably the

One year after recovery from SARS,
persistent pulmonary function impairment was found in about one third of patients.
The health status of SARS survivors was also significantly worse compared with the
healthy population.”19
addition, when combined with PHE’s information on the sensitivity and specificity of its antibody tests16,17, it is important for employers and healthcare professionals to recognise that a negative antibody test is an insufficient reason to conclude that someone has not had, or does not have, an infection with SARS-CoV2.
What if these symptoms represent a vasculitis or other autoimmune condition triggered by the virus that would be amenable to medical treatment such as anticoagulation or immune suppression? There are many reports of hypercoagulable
18
When dealing with a novel pathogen it is safer to investigate this cohort of patients and rule out possibilities of serious but potentially treatable pathology, rather than assuming that this is a “post” viral syndrome. The purpose of my argument is not to claim that any of the above hypotheses represent reality, but that there should be sufficient concern about these possibilities to warrant urgent action and investigation. The risks of inaccurately mis-labelling this situation as “post” viral are huge, both from an individual perspective, a public health perspective and an economic perspective.
A centralised approach to following-up patients will be capable of detecting serious complications in this group and potentially saving lives. An app reliant on patients to enter information gives a vital signal that there is an issue, but it is not fit for the purpose of detecting and communicating serious morbidity and mortality data in this group to healthcare professionals, the scientific community and policy makers. How will we study whether people have relapsing infections or can catch the virus twice, for example, if we do not have robust and well co-ordinated studies into patients suffering from long-term symptoms?
Whatever the cause of “Long COVID”, it will be important for policy makers and healthcare professionals to be well informed about the size of the population of people suffering long-term symptoms. Whilst SARS-CoV-1 is different to SARS-CoV- 2, it provides an important warning. There is evidence that survivors of SARS in 2003 suffer long-lasting ill health effects. “
Another study states “This 2‐year study of a selected population of SARS survivors, showed significant impairment of DLCO [Diffusing
Capacity of Lung for Carbon Monoxide], exercise capacity and health status
20
states in hospitalised COVID-19 patients
immunological, vascular and haematological sequelae needs to be evaluated and ruled out, not least as it would offer the possibility for intervention and improving outcome for these patients.
persisted”
survived SARS had not been able to return to work after 2 years. My intention is not to equate the two conditions, but merely to demonstrate that there is a precedent for long-lasting health issues following infection with novel coronaviruses. These long- term healthcare risks should be anticipated and used to inform decisions about risk when looking at easing lockdown. As the global number of infections with SARS- CoV2 has been so much higher than with SARS, if even a small percentage of patients are left with long-term health issues this will represent a very serious issue indeed. There is already emerging evidence of similar impairments in DLCO in
. The possibility of complex
. The same study showed that 29.6% of Healthcare workers who had

COVID-19 survivors- “...impairment of diffusion capacity is the most common
abnormality of lung function followed by restrictive ventilatory defect... Pulmonary
function test (not only spirometry, but also diffusion capacity) should be considered
to [be] performed in routine clinical follow-up for certain recovered survivors...
Subsequent pulmonary rehabilitation might be considered as an optional strategy.
21
Long-term studies are needed to address whether these deficits are persistent.”
.
Patients suffering prolonged symptoms would be helped by support and understanding. Patients should be investigated to rule out treatable pathology such as thromboembolic events, secondary bacterial infections, etc. A sample of Long COVID patients should be studied by experts including epidemiologists, infectious diseases and immunology experts to better characterise the condition and pave the way to discussing possible effective treatments. These patients may require financial help and their employers need to have a realistic expectation for the time it will take them to recover. Policy makers need to consider this group, and the risks of increasing its size, when deciding on lockdown easing.
I urge the government to establish a scientific approach to the study of patients undergoing prolonged COVID-19 symptoms (to establish the number of people affected, to investigate the cause of this, and to investigate possible treatments) as a matter of urgency. Awareness needs to be raised amongst health professionals so that treatable pathology is investigated and ruled out. Healthcare professionals have had a high workload and need to be provided with information and guidelines on how to manage long-term COVID19 patients as the situation becomes better characterised. Support should be provided for these patients who are undergoing distressing symptoms and severe impairment of their ability to work and live which at present has an unclear cause but with several concerning features as outlined above. Employers need to be made aware of this phenomenon and additional help may be required for these patients.
Yours sincerely,
Dr Jake Suett, MA (Cantab) MBBChir MRCA
Staff Grade Doctor, Anaesthetics and Intensive Care Medicine
References 1)https://www.telegraph.co.uk/global-health/science-and-disease/revealed-long-term-severe-
effects-covid-19-can-go-months/ 2)https://www.bbc.co.uk/news/uk-scotland-north-east-orkney-shetland-53056785
3)https://www.theguardian.com/world/2020/jun/07/it-feels-endless-four-women-struggling-to- recover-from-covid-19-coronavirus-symptoms
4)https://www.vox.com/2020/5/8/21251899/coronavirus-long-term-effects-symptoms 5)https://www.theatlantic.com/health/archive/2020/06/covid-19-coronavirus-longterm-
symptoms-months/612679/ 6)https://www.advisory.com/daily-briefing/2020/06/02/covid-health-effects
7)https://www.forbes.com/sites/joshuacohen/2020/06/13/report-suggests-some-mildly- symptomatic-covid-19-patients-endure-serious-long-term-effects/#62ade43559

That's a fantastic letter @godhelpusall and thank you for taking the time to progress this whilst in recovery. I'm going to write to my local MP in the same vein too.

@godhelpusall

Some of your letter has become scrambled in posting, do you think you could re-post? It's an excellent letter and I want to pass this on to my MP among others.

Shortness of breath and chest pain has really got me again today. It's quite scary for this to have returned at past 14 weeks. I've been starting to feel patches of normal-ish and the fatigue has lifted a bit. So it's been confusing to see the return of symptoms.

I feel like I'm experiencing BOTH post viral fatigue syndrome and a long tail covid syndrome with ongoing symptoms

@godhelpusall what can I say, just huge huge thanks, both for the information and support you've provided over the months, but also for your posts below and for making what must have been a difficult, personal decision for all our benefits.

I've already written to my MP but will write again with your letter. Perfect timing as I was about to chase him.

I'm not sure if you've seen this tweet (I found it on a Facebook group) but Trish Greenhalgh, a primary care professor, is preparing a paper on this too.

twitter.com/trishgreenhalgh/status/1273977136974618624?s=21

News
Homerton Hospital first post covid recovery info pack
www.hackneycitizen.co.uk/wp-content/uploads/Post-COVID-19-information-pack-5.pdf

@godhelpusall

Wow amazing letter and info! Yes huge, huge thanks for writing this!

@godhelpusall Thank you xx

Thank you @godhelpusall. I will write to my MP (Keir Starmer) too.

@LetsBeSensible thank you - that looks really good.