Our experiences of having COVID-19

In 2022, following feedback from our members, who told us they would find it helpful to hear from people with PH who have contracted COVID-19, we asked for personal experiences. Every one we received is included on this page.

“When reading these accounts, it is important to note that being up-to-date with vaccinations has clearly had a big impact on the severity of symptoms these people have experienced. It provides strong evidence that COVID-19 vaccines and boosters provide significant protection from severe disease, preventing hospital admissions. For that reason I would urge everyone with PH, and their friends and family, to ensure they are fully vaccinated – and take up offers of booster jabs when available. Thank you to all our members who have shared their personal experiences below.”

Dr Iain Armstrong, Chair, PHA UK

If you would like to tell us your own experiences of contracting COVID-19 with PH, please click here.

*Names with asterisks have been changed on request.

Sindy, 56, has PAH and osteoporosis. She tested positive for COVID-19 in April 2022 and was up to date with her vaccinations.

“On Friday 8th April I started to cough, which caused vomiting. This became worse over the next few days. On Wednesday 13th April, I saw a GP who prescribed antibiotics for a chest infection. She mention covid and I did inform her that I had had five negative lateral flow tests over the past five days. She did say that she had seen patients who had all the symptoms of covid-19 but tested negative and that a PCR test was the way to know for sure. I began to feel worse and continued to test. Then I tested positive.

I had fever, headaches, body aches and coughing. I also felt very tearful and strangely very hungry first thing in the morning!

I was petrified that I would end up on a ventilator if I became covid positive but after the two jabs and the booster, plus the weaker strains (hopefully), having had covid, I recovered quickly.”

Amanda, 41, has PH in association with congenital heart disease. She tested positive for COVID-19 in April 2022. She was up to date with her vaccinations.

“The only symptom I had was a high temperature on one night. Not sure if I only noticed this symptom as I am on IV epoprostenol; this drug causes me other side effects like muscle pain, flushing, headaches, sickness and a upset tummy. So, I only noticed the high temperature. I didn’t need any medical treatment. I kept myself hydrated and tried to sleep on my front.”

John* is 86 and has no other health conditions alongside his PH. He tested positive in October 2022, just before his booster vaccine was due.

“I had increased breathlessness, loss of appetite and zero energy. I was taken into hospital and had oxygen increased, intravenous antibiotics, and many blood tests. I left it seven days before calling 111 who told me to go to hospital immediately. Having this illness, and being on oxygen, I should have called for help sooner.”

Judy, 67, has pulmonary arterial association, interstitial lung disease and scleroderma. She tested positive for COVID-19 in March 2022. She was up to date with her vaccinations.

“I had sinus pain, cold symptoms and headache. I had an infusion of antibodies 2 days after contracting covid and I was clear at 5 days

I did the normal rest, plenty of fluids and took paracetamol. The covid pack directing me to the antiviral meds was really well organised, I spoke with the doctor within 24 hours of sending the test off and I was at the hospital 2 hours later.”

Ruby*, 62, has pulmonary arterial hypertension, scleroderma, with interstitial lung disease and Raynaud’s. She tested positive in March 2022 and was up to date with her vaccinations.

“I started feeling unwell with slight fever, cough, headache, sore throat, swollen glands and increased fatigue. After a couple of days with these symptoms I used the PCR test I had been sent due to being immuno-suppressed and the test came back positive the next day.

Symptoms persisted and following several calls to 111 to follow up on promised antiviral treatment a nurse came to my home and administered intravenous antivirals. Anyone taking sildenafil can’t have the oral antivirals my health authority are using so it had to be the intravenous one. My condition improved noticeably within 24 hours and I have continued to recover.

It is now two weeks since I tested positive and I currently have good days and not so good but that is the norm for me anyway. The nurse who came out to me said she had administered 50 infusions and only two patients had gone on to need hospital treatment which was very reassuring. She also told me to give myself at least two weeks rest to allow my body to recover even if I felt better.”

Caroline, 48, has CTEPH and breast cancer. She tested positive in April 2022 and had received two of her vaccinations.

“Chronic sinuses which led to coughing up phlegm due to postnasal drip. Nasal congestion which I’m usually bothered with was worse. And I felt lethargic. I received antibiotics and a nasal spray. I had covid in October 2021 too.”

Jozee, 34, has PH and systemic lupus. She tested positive in February 2022 and was up to date with her vaccinations.

“I had very heavy cold/sinus symptoms- like the worst sinus infection you can imagine. I had hot/cold shivers and was very tired.
I had a painful headache- although partly pain due to sinus – and upset bowels and breathlessness. My period was late by two weeks and I had a very small cough.

I received antibiotics because of a sinus bacterial infection and had anti-viral medications delivered in hospital (I didn’t stay overnight).

My advice would be to rest as much as possible- I did as little as I could for 2 weeks – and give yourself plenty of time to recover.

It wasn’t as bad as I expected it to be- I had lived with the anxiety of catching it for such a long time, I didn’t realise how much that had hung over me, catching it and knowing that I got through it actually gives me some comfort now despite feeling really rough at the time. I was also really impressed by how efficiently I was contacted and booked in for the antiviral meds through the NHS. I felt grateful there was something that could be done to help- the nurse described it as a sponge soaking up the covid- yes please!”

Deborah, 47, has idiopathic PAH. She tested positive in March 2022 and was up to date with her vaccinations.

“I had what felt like a bad cold for two days then a really upset tummy for two days after, then felt fine by day five. I just took paracetamol.

Although I tested negative on day eight and nine and went back to work as I felt well enough, I did realise very quickly that I was extremely tired/ exhausted by the end of the day. I do think this is still the effects of covid a month on as I’m still feeling this way.”

Angela, 65, has idiopathic PH and large cell vasculitis. She tested positive in January 2022 and was up to date with her vaccinations.

“I had a tickly dry cough for a couple days, a headache, raised temperature and I felt very tired. I took paracetamol and slept more than usual. I felt anxious about how it would affect me as it ran its course.

I was given the Molnupiravir anti-viral treatment on the fifth day after my positive test.

I was very worried about how and if I would be able to cope but to be honest it wasn’t as bad as I was expecting, probably thanks to the vaccines. It’s a relief now to know that my body can deal with it in spite of my PH and it’s taken a lot of the dread and fear of becoming infected should it happen again. I will still be very careful though to avoid it!”

Stacey, 28, has PAH and tested positive in April 2022. She was up to date with her vaccinations.

“It started with a general unwell feeling, then my throat got sore along with a cough. I had body aches which lasted a couple days. I was exhausted and slept over 14 hours most nights. I felt like I had a bad cold. After seven days I would say most of my symptoms were away. The first four days were the worse.

I just took painkillers and rested. I know it’s scary but try not panic. Make sure you have painkillers, cough sweets, easy to cook food, tissues and a few TV shows lined up to watch.”

Brian, 64, has PAH, atrial fibrillation, left side heart failure and arthritis. He tested positive in March 2022 and was up to date with his vaccinations.

“I had diarrhoea, extreme tiredness, loss of taste and smell, achy muscles and a headache. I didn’t receive any medical treatment.”

Ria*, 55, has PH, atrial flutter and sleep apnoeia. She tested positive in October 2021 and was up to date with her vaccinations.

“I had a cough (coughing up blood), temperature, aches, headaches, exhaustion, and difficulty in breathing.

“I was admitted to hospital a week after testing positive with severe dehydration and covid pneumonia. I had oxygen treatment, antiviral drugs, antibiotics, steroids and paracetamol.”

Jill*, 46, has sarcoid associated pulmonary hypertension. She also has sarcoidosis and aspergillosis, and tested positive for COVID-19 in March 2022. She was up to date with her vaccinations.

“I had a high temperature for two days, with a headache and general aches. I also had a sore throat and irritated airways for a few days. A couple of stomach cramps for one day, and cold symptoms (sneezing, stuffy nose) for about a week. Didn’t really affect my breathing and symptoms were pretty mild really.

I had an infusion of Sotrovimab on day 5 due to being on immunosuppression, but I felt I was getting better before I had it anyway.

The process of getting the treatment was not very good. I didn’t receive a phone call as was promised and so had to call the GP for the referral. I was then prescribed an antiviral tablet that had serious drug interactions with sildenafil that I picked up myself from the patient info leaflet. I then had to try to track down the right team to prescribe a different treatment which was difficult as I didn’t know who to call and the GP said it was nothing to do with them.”

Sybille, 73, has PH in association with systemic sclerosis. She tested positive in April 2022 and was up to date with her vaccinations.

“I had a temperature, was shivering being cold all the time, a sore throat, very bad headaches, nasal cold, hoarse voice, tired, slept a lot, and a little cough.

I was very worried about catching covid and maybe if I did before the vaccinations, it could have turned out worse than what is was – which was like a very heavy cold / flu.

I am high risk and was not contacted by the NHS after submitting my test, even though they said they would. I’m just glad it was not too bad in the end.”

Louise, 35, has idiopathic PH. She tested positive in February 2022 and was up to date with her vaccinations.

“My symptoms came on very suddenly one morning. I had a bit of dizzy spell but no other symptoms until a colleague told me that my lips had turned blue! I felt weak and tired over the next 48 hours but my symptoms improved within a few days.

My oxygen levels certainly dropped. I wouldn’t have wanted to catch it without having my

vaccinations and booster.”

Irene, 67, has PAH and arthritis. She tested positive in November 2021 and was up to date with her vaccinations.

“My main symptom was light-headedness and feeling dizzy when standing, aching and cold-like symptoms, cough, and I lost smell and taste.

I now have long-term tiredness and am more breathless than before. I am exhausted after the smallest exertion.”

Sarah Marshall, 41, has PH and PVOD. She tested positive in March 2022 and was up to date with her vaccinations.

“I had general cold symptoms -scratchy throat, runny nose, night sweats, slight fatigue, occasional dry cough which turned into occasional wet cough. My breathlessness with exercise was slightly increased, and my sats were a few points lower. But it was similar to when I have colds or other infections. I was still able to look after myself ok.

The symptoms were worse day two and three but completely manageable. Then after I had antivirals, they dramatically improved within a day. No symptoms by day seven but continued to test positive until day 15. I haven’t got any post-Covid symptoms.

As I’m on immune suppressants, I was offered antivirals. Within hours of registering my positive result on the NHS app, a doctor had rang me to check on me, and a few hours later, another rang to arrange for me to have the antiviral. I had the monoclonal antibodies infusion at my local hospital. The actual infusion only took about 30 minutes, but I was there about 1.5 hours. There were no side effects.

As I’d had the antivirals, I was automatically registered for the ‘Covid At Home’ service. A medical person rang me every other day to check I was ok. They also lent me an oximeter to check my sats and I had a phone number to ring if any questions or problems arose.

In all, I felt well looked after. I wasn’t on my own, there were people keeping an eye on me.

My advice would be that if you are offered the antivirals accept them. They made a dramatic difference to my recovery time.

Keep well hydrated and eat healthily- it just made me feel better. Rest. Your body is fighting an infection, so give it the best chance.”

Joan*, 64, has IPAH and tested positive in April 2022. She was up to date with her vaccinations.

“My main symptom was increased breathlessness. I got breathless moving around the house which is not normal for me. Severe cold symptoms – particularly nasal and ear congestion. Went deaf in one ear. Muscle aches. Headaches. Sore throat. Fever for first few days. Extreme fatigue. Blood oxygen levels started dropping from normal low base line. Fuzzy headed – got quite confused for first few days. Cough but only for 48 hours. Lost sense of taste and smell.

Although I have now tested negative some of the symptoms still remain – increased breathlessness, fatigue and nasal and ear congestion. I felt very unwell. Felt really anxious and quite scared at times.
I got a course of antivirals – molnupiravir – by taking part in the Panoramic study. I was sent a text from the NHS when I registered my positive test to say that because of my underlying health condition I may be eligible to go on the trial. I checked that I could take molnupriavir alongside my PH meds with my PH centre first.

I registered and was accepted on the trial and the antivirals were sent to my home. I thought I could do without antivirals during the first few days but my symptoms got much worse on day three and my blood oxygen levels began to drop which was scary. Really pleased I had them in the end. They made a real difference very quickly. I’m convinced they shortened my recovery and stopped the symptoms getting worse. I was a step away from having to get medical intervention.

I did respiratory exercises regularly whilst I had the infections and have continued this. It certainly helped get more oxygen into my lungs and has helped my breathlessness. They are good for anxiety too.”

Suzy, 53, has IPAH and tested positive in March 2022. She was up to date with her vaccinations.

“I felt cold and shivery, and I said to my husband I’m coming down with something. The next day I was sneezing and had such a runny nose. I also had the most horrendous headache.
Being on IV medication I thought it was that but thought I had better do a covid test.
It was positive, and I was so scared and worried. I took some paracetamol and slept lots.
For three days my head was awful, and it felt a full blown cold but then it was the tiredness that I felt. I just completely rested.”

Emma*, 72, has PAH and systemic sclerosis. She tested positive in March 2022 and was up to date with her vaccinations.

“I had a headache, slight sore throat, slight temperature, neuralgia, blocked nose and runny nose, tiredness. After two weeks a cough. I feel it has set me back in terms of exercise and fitness.

I was really worried initially with having PAH but realised that unless I started to become really poorly I would be ok.”

Deb, 54, has PAH and lupus. She tested positive in October 2021 and was up to date with her vaccinations.

“It felt like I had a bad cold. Runny nose, chesty cough, very tired and a headache. I just used paracetamol.

Take things easy as the tiredness lasts quite a while and you think you’ve got over it, then some of the symptoms can come back again.”

Kaylee, 21, has PAH and other heart problems. She tested positive in December 2021 and was up to date with her vaccinations.

“I had a temperature, and a cough. I felt very drained and slept a lot. I got a little breathless but not much. I didn’t need oxygen either. I was unwell for about four days and then felt fine besides just being tired. I took paracetamol.

Obviously, everyone is different, but I was very happy I was able to overcome it with no medical intervention.”

Liesl, 56, has idiopathic PAH. She tested positive in December 2021 and was up to date with her vaccinations.

“I didn’t have a cough or temperature. The worse symptoms were headache and back ache, I also lost my appetite and was completely exhausted. I felt rough for 4/5 days and had no energy but was able to get out of bed. Even once I tested negative I still had no energy and didn’t want to eat for a few days, which was annoying as it was Christmas!”

Donna, 51, has idiopathic PAH. She tested positive in April 2022 and was up to date with her vaccinations.

“I had a dry annoying cough the first couple of days and couldn’t get warm. Then blocked sinuses in nose and head for the next couple of days. Lack of energy throughout and breathless more than normal. I took paracetamol and drank plenty of water.

It wasn’t as bad as I thought it would be, it felt like a bad cold/mild flu.”

Teresa, 57, has PAH, lupus and epilepsy. She tested positive in March 2022 and was up to date with her vaccinations.

“I had flu like symptoms, a phlegmy cough, no appetite, extremely tired. It affected my taste and smell.

Still three weeks later, even though I’m testing negative I have got cold symptoms and am extremely tired.”

Amy, 28, has idiopathic PAH. She tested positive in February 2022 and was up to date with her vaccinations.

“My symptoms were loss of taste and smell, blocked nose, headache, dry cough (only for a day before testing positive) achy body and tiredness. Although it wasn’t nice to have, I was surprised that it didn’t actually have an impact on my PH.”

Laura*, 23, has PH and tested positive in March 2022. She was up to date with her vaccinations.

“I had a sore throat, cough, lost my voice, headache, tired and breathless (but not excessively). I built it up to be such a huge thing and I was very scared about contracting it due to media and everything being conveyed as very scary but from my experience it was no worse than normal flu.”

Isabel, 55, has PH and peripheral neuropathy.  She tested positive in October 2021. She was up to date with her vaccinations but was due a booster three days after contracting it.

“It felt like a really heavy cold, not ill”

Julie, 62, has IPAH and a pacemaker.  She tested positive in March 2022 and was up to date with her vaccinations.

“I started with sneezing and a slight cough for a couple of days even though I tested negative. Then I had a fever and was shivering, I felt nauseous and had a headache so I went to bed where I had a long sleep! Unusual for me with my PH!

When I woke up I tested positive and continued with the runny nose, cough with clear catarrh. Itchy eyes and headaches. I was extremely tired and these symptoms lasted for almost 2 weeks. I had to take regular paracetamol 4x daily for the headaches and I needed to drink lots of hot water which helped me a lot.

I’m feeling better now but still have fatigue and am sleeping more often, but thankfully the other symptoms have gone away including the constant catarrh which remained when the cough stopped. Strangely it didn’t develop into a chest infection which is what usually happens to me, so I believe the vaccines have really worked and saved me from hospitalisation.

I just used regular doses of paracetamol throughout the day for two weeks and chatted to my doctor as I thought my chest would become infected but thankfully it didn’t.”

Patricia, 59, has IPAH. She tested positive in March 2022 and was up to date with her vaccinations.

“I had a head cold and lost my taste but not smell. I didn’t need any medical treatment.”

Steph, 50, has IPAH and tested positive in December 2021. She was up to date with her vaccinations.

“I felt rough before I tested positive, aching, sore throat, very tired and grumpy.
I tested negative with my PCR and lateral flow test at 7pm but during that afternoon my throat changed to having a funny taste and was very sore. I also knew my body was fighting off something as I felt a few extra heart beats.

By 7am the next day I tested positive and had a positive PCR which was no surprise as my colleagues and children I work were going down like dominoes.

I stayed in bed as I was so tired. Ached like the flu. Had a high temperature. Felt it moving through weirdly and it landed in my left lung and on day three hit my ear drum of my right ear and it was so loud like being in an MRI scanner. My chest became tighter daily at around 7pm for a few hours. I drank lots and took regular paracetamol.

The local community doctors rang me and dropped around an oximeter and asked me to send them my temperature and sats three times a day. If I didn’t text on time they rang me. I felt very looked after. My doctors didn’t even know I was in the shielding category so I thought this was fab. They even offered to come and relieve the pressure in my ear but I said I’d sort it after I was negative.

I was a bit more out of breath than usual but I’ve have had much worse PH days in the past.
I had very painful tongue glands when I smiled, ate etc and was very dribbly. I was given antibiotics by a nurse over the phone afterwards to try to sort my ear out. Then I had my ears hoovered. He said my ear drum was inverted so he thought I still had an infection.

I went back to my GP to get my left lung listened to and she said that sounded clear and gave me medicine to squit on my tongue as she said that was mouth thrush from covid! She also gave me an aqueous nose spray to help clear my ear tubes. It took my second prescription of that to start shifting it and I was very deaf for 12 weeks.

It was very noticeable at work (I went back on day 11). And I was more out of breath going up hills with a wheeze in my lung for 12 weeks.

It hasn’t really stopped me and honestly PH is worse than my experience with covid. I found it do-able and a relief to get it in the end after all the worry of catching it. I’m very grateful for my jabs and that it was ok.

It was stressful when my chest was tight and because at first all you ever heard on the news was this could kill me. However it was a relief to get it and survive it and to not get it too badly! I now live a normal life and carry on as normal out etc.”