On April 21 the unthinkable and yet perhaps inevitable happened. I had worsening of my asthma and what felt like severe hay fever. After a spell in the hot tub, I noticed I was beginning to feel unwell and took a covid test “just in case.” A very thick black line appeared almost instantly. 

I have been really very careful to reduce my risk of catching this disease as low as possible. I couldn’t live in a total bubble, but with good ventilation and HEPA filters at home, and a severe limit on social activities I was still semi shielding. But my girlfriend wasn’t.  And nor was my son. So I knew there was a risk and was prepared to take it for the sake of having a life. I had literally been locked in a room for many months but couldn’t continue that approach.    

For me I was very concerned that due to my blood cancer and secondary immune deficiency i would be highly likely to experience severe complications and be hospitalised or worse. I had made zero antibodies in response to the vaccines. And that first day of covid infection, the way my asthma was deteriorating was already alarming, and reminded me of the time in spring 2020 when a simple cold, caused by a rhinovirus, sent me to hospital. I was unable to get rid of that virus for 18 months. If that was my response to a cold then what would my response to this be?

To be fair the cold had happened before I was started on my antibody treatment of a weekly infusion of donated antibodies (SCIG). In fact starting that infusion had been the thing which finally led to me defeating the common cold. A couple of months before catching covid we tested my blood and discovered that my donated antibodies now finally contained healthy amounts of covid antibodies from healthy donors. The delay in me catching covid meant that these antibodies could now help to save my life. 

You are allowed to double up on your dose of weekly SCIG if, for example you are going on holiday and want to take two weeks worth at once. Since the natural response to an infection is to increase the number of antibodies in your blood it seemed like common sense for me to do that. So I took a double dose of my infusion, even though it was a couple of days early, whilst exploring other treatment options. 

Here in the UK you are advised to report an NHS covid test and in theory if you qualify for treatment with antivirals you will be called by a special team. But many have waited and not been contacted so the blood csncer uk advice is immediately to contact your doctors. So I sprung into action. 

First up an email to my two clinical nurse specialists (one for the CLL team and one immunology). That email got an automated reply and so I called the hospital’s helpline and a receptionist took my details down and promised a call back soon. I wasn’t going to wait for that though and so called my GP. They weren’t quite so helpful as I was told by them it was a GPs job to prescribe antivirals (it isn’t) and that as it was a Friday there was nothing they could do until Monday!  They did suggest calling 111 which I then did. 

The 111 call handler initially wanted to know if I was bleeding or not. And when i told them about how my asthma was getting worse it was hard to persuade them I didn’t yet need to go to hospital, and that I wanted them to try and help ensure I didn’t end up there! But they did agree to have someone call me back “within an hour”. Believe it or not the person who called me back more than two hours later told me that as it was during office hours they couldn’t help me and I should contact them again at 6pm. 

But meanwhile my lovely Clinical nurse specialist had called me back. She listened, allayed my anxiety and assured me she’d call my local covid medicine delivery unit (CMDU) immediately. Why on earth we can’t just self refer to those units I will never understand!

Within five mins of talking to my CNS a patient screener from the CMDU rang me back. She said they weren’t that busy and that a clinician would contact me shortly. The whole process of course felt very painful and like jumping through hoops any one of which could have been the cause of significant and potentially life threatening delay. 

But not for me that day, thank the Lord! Within minutes I had a callback from the CMDU clinician who was able to take me through what medicines I needed to pause so that I could safely take the paxlovid. This drug has been shown to reduce the risk of hospitalisation and death by something like 80%! 

And so, despite this rather clunky painful patient pathway, within just THREE HOURS of my positive result I had the three rather large tablets in my hands. 

It was just as well since by this time I was starting to feel really muddle headed, systematically unwell and actually had a rigour (significant shivering) and the sense my temperature was about to sky rocket. All these symptoms disappeared almost as soon as I took that first dose of the antivirals!

I was left with my nasty asthma attack which  was no doubt part of the body responding to Covid. The CMDU didn’t have any advise about that but did agree that there was no reason to at least double my oral steroids which I take because my adrenals can’t make enough on their own. This doubling is something I’m meant to do whenever sick with anything. There’s good evidence that steroids help prevent the peculiar form of pneumonia that covid can trigger. And so when the 111 opening time came I called them back and had a very helpful conversation with a doctor who agreed we should treat my symptoms with an even higher dose of the steroids I take every day. 

And so the waiting began. As I say everything except the asthma responded immediately to the antiviral. And the high dose of steroids led to a significant improvement in my asthma as well over the next few days. 

I was warned that paxlovid might give me a horrid taste in the mouth and to buy strong mints and lemon sherbets to counter this. But I had no side effects whatsoever to the drug. I was aware of the risk that five days might not be enough for an immune compromised individual. The so called “rebound” phenomenon scared me and I wished I could have a longer course. But as it happened I remained just fine after stopping the drug and my fear was groundless in my case.

My girlfriend happened to be around when I tested positive and also tested positive at the same time. And so over the next few days she witnessed the over stimulation a high dose of steroids cause me. She seemed more than capable of managing that. And so when I had come down from that higher dose and was back in my right mind I decided it was time to ask her to marry me. She said yes. 

In the aftermath of COVID I had a huge sense of relief. And whilst I do want to try and avoid catching it again it seems I’m likely to be ok if I do so. That changes everything. I have decided to take a few more risks at least over the summer on the basis that I’m likely not to catch it again immediately. I have visited church for the first time in ages. I have booked our wedding for 1 July THIS YEAR. And I’ve even agreed to catch a plane so we can honeymoon abroad. 

Was all that shielding worth it? Definitely. As it meant that I caught covid finally at a time the CMDU wasn’t busy, this meant I was able to get the antiviral so quickly which is when it works best. And whilst the antiviral was preventing the covid from multiplying, the donated antibodies now included sufficient amounts to mop up the virus form my blood. Combined with the steroids I was quickly well and tested negative on day six.

Will I remain as relaxed about catching infections later in the year?  Probably not as it’s not just covid that concerns me, and clearly many illnesses are more prevalent in the winter. 

And what of you if you haven’t caught covid yet? Would I recommend giving up and accepting that it’s inevitable we will all catch it one day? Not necessarily. It’s obviously up to you. But I for one don’t regret successfully running from Covid for so long, even though it eventually caught up with me!