Jonathan’s story

“My wish would be for a better understanding of the condition, primarily to speed up diagnosis.”

The long road to diagnosis

I’ve had symptoms for as long as I can remember. Growing up in the north east of Scotland, I led a very active childhood. We spent our summers camping, swimming and playing outdoors on the farm. I remember being ill for long periods of my childhood. I would have ear infection after ear infection. This caused me to have a lot of time off sick and meant I would struggle at school. I would have some periods of good health from time to time but I remember not feeling well on many occasions. I always scraped by at school.

In my teenage years it was much the same. I was ill a lot during the first and second years of secondary school and my school work suffered, but I scraped by. I think many teachers considered me lazy because I couldn’t get things together long enough to really make the grades. I had a period of good health when I was about 15 but this soon lapsed back to the normal ear infections and colds. Mouth sores were common too, among other infections.

When I was 16 I left school to start a job as an apprentice electrician. This was a disaster as I was ill week after week. I left this job and worked hard to get a place at university. For a few years I felt OK but never 100%. I did, however, manage to get my degree and began work. My early twenties were reasonably illness free. I worked hard and started to build a career. I met my wife and we have two children.

In April 2013 I had the worst ear infection ever. I was still working but in agony every day for weeks. I had lots of antibiotics from my GP but nothing shifted the ear infection. One Friday evening I was up all night with the worst headache ever. I was being sick a lot. Eventually, I couldn’t recognise anyone and so was rushed to hospital. I had a brain abscess caused by the infection, which had got into my skull. I was operated on and spent over four weeks in hospital. I was discharged but continued to get more ear infections and other illness. In July 2014 I was back in hospital with meningitis.

Finally diagnosed

After all of this and the constant illness and hospital stays, I was diagnosed with CVID. I remember the relief of actually having a diagnosis. The consultant was very apologetic but I was so happy. It was great because now I knew what the problem was and had been all along. It was so uplifting. You may think it strange when I say I was pleased to be told I had a lifelong illness but I had been ill for years and now there was a chance of leading a more normal life.

The start of treatment and a new life

I began immunoglobulin therapy in winter 2014. After a few months I was trained to administer it myself at home. I was reluctant at first but I am glad that I can have immunoglobulin at home now.

We are in February 2016 now, and I’ve not had a serious infection since I started the immunoglobulin therapy. Even the normal colds and bouts of flu I would usually get have been kept at bay. The infusions take a few hours every week but they relaxing and I know they keep me well.

Be patient with your treatment

To newly diagnosed people I would say be patient with the infusions. It’s not a great thought having to do infusions for the rest of your life but with groups such as PID UK, we have a great community of people. Don’t feel bad about feeling good. If you’re like me, you’ve probably been ill for as long as you can remember. Most people don’t understand but everyone who has CVID knows exactly how it’s been.

My wish

My wish would be for a better understanding of the condition, primarily to speed up diagnosis. I think given all my illness I could have been diagnosed years before. Hopefully nobody else has to go through the problems and illness I had.

Posted February 2016