Why a diagnosis took 11 months and 4 days to find and why it’s so medically baffling
A quick reminder of my current symptoms (since Covid, March 2020)
- Shortness of breath and tight chest when walking / talking / bending over (currently more than 20/30 minutes).
- Exercise intolerance + post-exertional malaise (worsening of symptoms after minor physical or mental exertion).
- Random…
The answer is “not yet” — here’s why.
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IMPORTANT:
My specialist agrees with my decision to not have the vaccine (yet).
Due to the severity of my multiple diagnoses.
*This confirmation is based on my case alone.*
If you are blessed to be in good health, please remember this: there is…
How an exercise test and a high dose of colchicine led to a long covid breakthrough
To give you some context about my situation:
- My pre-covid diagnosis: no diagnosis / symptoms except low blood pressure
- My post-covid diagnosis: blood clots in right lung which dissolved thanks to blood thinners, hypoperfusion defect in right lung (ongoing blood thinners), post-covid…
I was so moved by their responses, I had to share them with you
I posted this on Instagram.
In the post, I asked what “what is your deepest learning right now?”
Fellow long covid warriors shared their insights…
I was so deeply moved — they came straight from the heart.
I resonated with every…
When you’re chronically ill, it can spark hope in the lowest of times.
I NEEDED to see this.
Here’s a little story..
Last week, my specialist told me that Covid has damaged my blood vessels. Not only that, but I’m going to have a scan to see if there’s a “hole in my heart”. …
Five major insights that I learnt this week…
I’m here to translate the madness of my recovery into language that’s understandable for anyone who’s not a scientist or specialist, which is pretty much all of us…
I’m at the point where I can no longer scour medical journals in the daunting attempt of trying to decipher medical science speak.
It’s overwhelming.
I’ve been desperate to understand what’s happening to me in layman’s terms & why.
My specialists are…
When everyone around you is telling you something that every fibre in your body is rejecting, what do you do?
This was taken in September 2020.
I tried ignoring my symptoms because no amount of holistic or pharma meds were working. Ignoring my shortness of breath and the fiery storm sweeping through my lungs.
Continuing to…
As someone who is still experiencing the wrath of long covid 15 months later, I am utterly horrified — this could mean 10,000 new long haulers per day
This is how I felt after watching the televised announcement on the 5th July:
The article includes coverage of The Hidden Voices of Long Covid Project.
You never think that something like this will happen to you, until it does.
[Open on desktop —*warning* the stories may be triggering to read].
1 in 10 of us who have Covid will experience symptoms for 12 weeks or more.
These are just some of the brave voices behind the hidden struggle of Long Covid in the UK (otherwise known as post-Covid syndrome).
These stories have been collected since April 2021, from largely previous fit and healthy people (including children), without pre-existing conditions, whom experienced Covid, weren’t hospitalised and now who’s health has been destroyed by the virus.
I am one of them. Today, marks 15 months since I first had Covid (14th March 2020) and I’m still largely housebound.
Covid can leave behind a string of various mysterious symptoms, many of which can be extremely hard to clinically detect.
Just as I experienced, countless Long Covid patients are not given the extensive testing that they need — their initial tests appear ‘normal’ and their symptoms are written off as ‘anxiety’.
Just because there’s not evidence for something ‘yet’, it doesn’t mean it’s not there.
Via extensive testing, I’ve now been diagnosed with the equivalent ‘lung gas transfer’ as a lung disease patient, although my CT scan is clear, (a pattern seemingly emerging amongst long haulers), plus fluid around my heart and blood clots in my lung — the latter defying the medical system.
My case is currently being written in a medical journal.
Now, imagine what could be happening in the bodies of the countless patients who are equally being dismissed?
One of the problems may be clotting, which is occurring even in people (like me), who managed their Covid illness at home, as highlighted by my life-saving respiratory consultant, Dr William Man, who runs the Post Covid Recovery clinic…
