My name is Suzi Arnold, I am 43 and was diagnosed with common variable immune deficiency (CVID) when I was 39. I had a normal, healthy childhood. I spent most of my time outdoors, climbing trees, paddling in the local stream and playing hide & seek.

“Once I’d received a diagnosis, I felt a great sense of relief, as I finally had a name for how sick I felt. “

My road to diagnosis

In 2001 I gradually started getting tummy upsets, sinus infections and colds. In 2006, this soon escalated to constant chest infections. In 2009, I had shingles, shortly followed by two bouts of pneumonia. My GP just told me I was run down & treated me with antibiotics.

In 2010, I had pneumonia again, but this time I didn’t respond to antibiotics. My condition deteriorated very quickly & I ended up being rushed to Exeter hospital by ambulance, then being transferred to Intensive Care. This very scary incident had a silver lining, as it was the micro-biologist in Exeter, who referred me to the Immunology Unit in Derriford Hospital, where I was finally diagnosed as having CVID. I can remember arriving for my first appointment in a wheelchair and feeling really exhausted, poorly & scared.

Getting the diagnosis

Once I’d received a diagnosis, I felt a great sense of relief, as I finally had a name for how sick I felt. I was able to stop beating myself up, for failing to keep up with everyone else, for missing social occasions and feeling like I was letting down my family & friends. I also felt relief there was treatment available and that hopefully I would soon start to feel better.

From intravenous immunoglobulin to subcut

My fears were soon allayed, as I immediately started receiving replacement intravenous immunoglobulin every three weeks to gradually bring my immune levels up from being very low (less than 1) to normal levels. After 6 months, the wonderful nurses at the Derriford Immunology Unit started to train me to self-administer weekly sub-cutaneous Immunoglobulin infusions and I was able to complete my first home infusion on November 2010.

My improving health and fulfilling my dreams

Since starting treatment my health has dramatically improved and I have been able to lead a fuller life. I have always been a keen runner, so I have been able to continue my training. In September 2013, I fulfilled my dream of completing a Marathon and in May 2014 I took part in the Edinburgh Marathon.

I have learnt to be well organised, once I’ve completed my weekly infusion I refresh my kit or the next week. I often carry out my infusion at work, whilst I’m sat at my desk, so it’s handy for me to have a bag packed with everything I need. I enjoy the flexibility this gives me, as I am able to choose when and where I carry out my infusion.

Posted January 2015