I’m grieving the person I used to be – Jasmine Heyer

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They had the same symptoms at the same time (flu-type symptoms, loss of smell and taste lasting for two months and breathing problems from day 7. This because intense breathlessness for eight days “it was like being shoved underwater and at times they were gasping for air).

Using meditation and yogic breathing she would try to push her breath down to her diaphragm, but in 30 minutes it felt all the breath was being pushed back up.

Because they had no continuous cough or fever both women were told not to go to hospital.

April 4:  Jasmine takes her first ‘normal’ breath. PTSD cuts in with flashbacks, nightmares, anxiety and uncontrollable crying. She also had severe brainfog.

April 11: Jasmine begins to feel much better and restarts gentle yoga.

May 2 Jasmine wakes up gasping for air. Her chest returns to feeling as if it is caught in a clamp. Her breath is so short that walking just 100m feels like running a 10K. 

June 2020: 10 minutes of stretching leave her bed bound for a week. She loses her appetite, experiences severe constipation, cannot even talk, has irregular menstrual cycles, acid reflux, increased heart rate (with high resting rate), heart palpitations, insomnia, anxiety and depression. She also has an awful itchy rash all over her arms, that bleeds from scratching. 

What Jasmine describes as an ‘avalanche of negative thoughts’ cuts in – despite her ability to separate herself from her thoughts and emotions thanks to her meditation practice.. She later discovers that studies that the virus can rewire neurological pathways to cause depression and anxiety.

August 27 Because she has no medical evidence for contracting CV-19 since she couldn’t  get any tests done when she contracted CV-19, she has to rely on her story. Jasmine is tested for CV-19 but her results are negative for antibodies (research is suggesting that Long Covid is associated with an inadequate immune response to the virus which could affect this – see Bruce Patterson MD). Finally more sensitive test comes back as positive. Finally Jasmine is added to a waiting list for a Long Covid clinic. She and her family learn that CV-19 lung damage is not always detected with X-Rays or CT scans.

November 22 Jasmine’s lungs have been improving, she had begun to feel optimistic and stronger. She goes on a (very slow) long walk and is elated that she experiences just a tight chest. One hour late a ‘firestorm’ begins and rips through her lungs with sharp pains in her heart. She feels as if she is dying, her life being sucked out of her. The firestorm continues sporadically over the months. Jasmine uses ashwagandha, magnesium and Ayurvedic oils to calm her lungs and manages these episodes consciously with phrases such as “you are safe”, “this will pass” and “we’re going to get through this”. 

December 2020; A wave of PTSD lasts two months with uncontrollable crying for 10 times a day. GP phone calls and trips to a respiratory specialist end in a ‘it’s likely that you have anxiety’ diagnosis. Jasmine feels that medics are not listening. She wonders how could anxiety be a diagnosis for not being able to walk for five minutes without panting? 

December 15 2020 Jasmine cracks and experiences a mental breakdown. She calls into work and sign off. Despite everything she has tried, her health is not getting better but specialists she has seen have told her that there is nothing wrong with her lungs and well-meaning friends and family tell her that she needs to believe them. Her gut instinct is telling her something very different, however. Feeling lonely, disbelieved and desperate, she cries out with all her soul.

December 18 2020 Jasmine finds respiratory specialist Dr William Man of the Royal Brompton’s Chest Clinic. He is used to treating Long Covid and they talk for one and a half hours. Relief and gratitude surge through her. She is connected to Karen Dobson, the best cardio-respiratory physiotherapist. It seems that while the yogic breath work was the best thing she could have done in March, for Long-Covid it was the worst thing, as it expelled too much CO2. Covid changes the medulla – the breathing centre of the brain, which changed her CO2 levels and created a dysfunctional breathing pattern as a result of CV-19 Covid pneumonia.  

11 February 2021: Jasmine undergoes a huge series of tests at the Royal Brompton hospital. They involve a variety of specialist lung function tests, a CT scan, a specialist CT scan (called a dual-energy CT pulmonary angiogram), a 24/7 ECG, specific blood tests plus the basic’s (ECG and baseline bloods).

The lung function tests  a capillary blood gas test, peak flow test, spirometry and a gas transfer test (also known as lung diffusion).

February 2021: “The good news”.  The CT scan was clear  no damage to the lungs and no evidence of lung disease. The dual-energy CT pulmonary angiogram showed no evidence of pulmonary emboli (blood clots in the lungs). Another PHEW (or so she thought at the time). Blood tests, thyroid function, B12 and folate were in the normal range. D-dimer and  troponin blood tests were normal which showed ‘no evidence of recent blood clots’. Although ferritin was in the normal range (26 mcg/L), it was at the very lowest end and iron supplementation was advised. Her ECG was normal.

“The concerning news”. Jasmine’s BNP marker blood test was elevated— this showed a strain on the heart and they weren’t sure why. “We need to test for heart damage asap so an echocardiogram is needed”. Her lung transfer test was 53%, which is the same level as a lung disease patient yet without any evidence of lung disease! Normal levels are 80% upwards. Her lungs could not exchange oxygen from the lungs into the blood properly which was inexplicable. So she needs a VQ scan (ventilation perfusion scan)  to investigate further.

Jasmine’s PTSD and anxiety ramp up. She knows something is seriously wrong and has a lot to process. 

February 18 2021: More tests. An echocardiogram investigates why there is a strain on her heart. The consultant is clearly concerned. The Ventilation-Perfusion Scan (VQ) measures how well air can flow through the lungs and where blood is flowing in your lungs. It takes 45 minutes and Jasmine takes herself to a warm beach in a meditation, feeling grateful for the technology that was going to help her get better.  Two hours later an urgent call from Dr Man lets her know

The echocardiogram shows a mild build-up of fluid around the heart which was causing strain and which is reducing naturally over time. An MRI for the heart is required.

The VQ scan shows an obstruction at the top of Jasmine’s right lung which is stopping the oxygen getting through and explains the low gas transfer result. Most likely theory is mini blood clots. Jasmine is advised to start Apixaban, a blood thing medication as a matter of urgency, despite the risks of the medication. If it is blood clots,  it’s life threatening. The treatment has proved effective for other young and fit patients.

Jasmine’s Covid antibodies, which were found in August,  have disappeared. She has also tested positive for Epstein Barr antibodies, which half of Dr Man’s patients also show up with, supporting a growing link between CV-19 and EBV. She has a low CO2 level, tachycardia upon standing/movement but thankfully no evidence of pneumonia/residue.

Feelings of intense gratitude mixed with devastation wash through Jasmine. Equally, she felt devastated.

Concerned about taking any medication, she emails with her concerns and Dr Man answers directly late at night, alleviating her concerns. 

February 22 Jasmine begins taking the medication. It is saving her life.

April 24 2021 Jasmine is finally diagnosed with long-Covid-related moderate depression, mild anxiety and PTSD’.

May 2020: With an explosion of support groups for Long Covid, suddenly Jasmine no longer feels alone. She becomes an activist, feeling that many long-haulers are simply not getting the tests and supports they need.

June 27: Jasmine is diagnosed with post-covid pericarditis (heart inflammation) and starts to take colchicine, a medicine used to prevent inflammation and pain and which can be used with gout. By beginning of July she has seen a huge improvement in her ability to walk and talk. It seems to be working really well for first wave Long Covid patients. She talks for two days with no ‘fiery lungs’. 

August 3: Jasmine learns her immune system can’t switch itself off. Her inflammation doesn’t show in basic blood tests and she needs a specialist test – T Cell Flow Cytometry – which is not available on the NHS costing £900. 

It seems also that endothelial function is the link between heart inflammation and reduced gas transfer. But there is no test for it.

We are wishing Jasmine every best luck with her continued progress towards sustained health.

Find Jasmine on twitter @JasmineHeyer

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