This anonymous story captures one man’s journey with CVID – a silent battle marked by years of unanswered questions, resilience, and ultimately finding a way to live fully with PID.
Living with something that didn’t make sense.
Through my twenties, I was constantly dealing with chest infections. What started as the odd illness gradually became something much more persistent. Coughs wouldn’t go away, and over time the infections seemed to last longer and hit harder.
As the years went on, it really started to take its toll.
My energy levels dropped to the point where even simple things became difficult. I remember
struggling to get down the stairs in the morning. I had always been active and played a lot of
competitive golf, but that slowly fell away. Work became harder because I was often out sick, and eventually I had to leave a job I loved because it involved travel and I just wasn’t well enough.
Social life changed too. I missed events, nights out, and even concerts—something I always loved, especially seeing U2.
One moment has always stayed with me. I remember sitting at the top of the stairs, holding my young son, trying to build up enough energy to carry him down. That was when it really hit me—this wasn’t normal.
The long wait for answers
From my late twenties into my mid-thirties, I was trying to figure out what was going on.
I was told many different things over the years—from depression to TB, and even ME—but none of it really explained how I felt. At one point, I developed nodules in my neck and had surgery to
remove them. Thankfully, they were benign, but it added to the uncertainty.
Everything finally changed when a physician admitted me to hospital for a full week of testing.
That’s when I was diagnosed with CVID.
I remember being told—but I hadn’t a clue what it meant. I had never heard of it before.
What made a huge difference was the support that followed. An Advanced Nurse Practitioner in
Beaumont took the time to explain everything to me, and she is still part of my care today. My main feeling at the time was relief. Relief that I wasn’t imagining things. Relief that there was
finally a reason for everything I’d been going through.
Starting treatment – and feeling the difference
I started treatment with hospital-based infusions. The facilities were under pressure, and I always felt for the nurses who worked so hard to look after us. But the difference the treatment made was immediate.
I still call it my “juice”—because it felt like my body just lifted almost straight away. Even now, I still feel that boost after an infusion.
Finding a way to live with CVID
From early on, I made a decision: I would control the illness—not let it control me. I wanted to work, to travel, and to build my career. That meant adapting treatment around my life as much as possible. Over time, my treatment changed from weekly infusions to once every three weeks, which made a big difference.
There are moments I look back on fondly—like lying on the bed during infusions with my young sons beside me, watching Top Gear together.
As my career progressed, I travelled a lot, which brought its own challenges. Planning everything around a three-week infusion cycle—and knowing I’d feel a dip before the next one—wasn’t always easy. At times, it meant doing things that felt a bit extreme, like flying from Sydney to Dublin, driving to Galway for an infusion, and then flying to Los Angeles the next day. Very few people at work knew I had CVID.
That was a personal choice. I didn’t want it to limit my opportunities or how people saw me—I just wanted to get on with things.
The reality of infusions
Infusions are just part of life now, and they come with their own rhythm.
The evening before, I usually feel more tired. I describe it as being a bit “clumsy”—dropping things or not being as sharp. Over time, I’ve learned to recognise it and take things a bit easier. For years, I infused into my legs on Friday nights so I could travel again by Sunday or Monday. It often meant missing golf at the weekends, but it allowed me to keep everything else going.
More recently, I’ve moved back to infusing in my abdomen, which works better for me.
I’ve also found ways to help my recovery:
- A short walk after infusion
- Diaphragmatic breathing
- Gentle massage
With that, I’m usually back to myself within about 48 hours. That said, it’s not always easy. There are times when it feels repetitive and frustrating. Sometimes I even look at the bottles and think—I wish I could just drink them.
Living a full life
Today, I can honestly say I live a full life.
With the support of a great immunology team and my GP, and by sticking to my treatment routine, I’ve had far fewer infections. Routine has been key for me—same day, same time, every three weeks. Now that I’m retired, I’ve moved my infusions earlier in the week, which means I have my weekends fully back. That’s made a big difference.
Fitness has also become really important. The fitter I am, the better I recover and the quicker things settle after an infusion. CVID is part of my life—but I try to keep it as small a part as possible.
A few things I’ve learned along the way
To anyone newly diagnosed: Trust your medical team and follow their guidance. This doesn’t define you—you can still achieve everything you want to.
To healthcare professionals: You see patients at clinic appointments—but we live with this every day. A patient who seems fine may still be struggling. Sometimes a simple check-in outside of appointments can make a big difference.
To family and partners: Thank you. Your patience and support mean everything. The days around infusions can be tough, and sometimes we just can’t move as fast as we’d like. We know it can affect plans—holidays, dinners, concerts—and we appreciate your understanding more than you probably realise.
A final thought
In Ireland, there is a Long-Term Illness Scheme that provides essential support for people living
with certain chronic conditions, but it has not been meaningfully updated in decades.
Primary immune deficiencies such as CVID are lifelong conditions requiring ongoing treatment and careful management, yet they are not currently included.
Many patients continue to work, contribute, and pay taxes while managing this condition. With the right supports, we can live full and productive lives.
Recognising primary immune deficiencies within long-term illness frameworks, similar to conditions like type 1 diabetes, would be an important and fair step forward for patients.
