My name is Mitch and I have recently been diagnosed with common variable immune deficiency (CVID). I had symptoms suggestive of a primary immunodeficiency from an early age but was age 33 at the time of diagnosis. This is my story.
From childhood, at various times of the year, I would always get chest infections, ear infections, sinus problems and a persistent phlegmy cough. I even had a bad episode of pneumonia a few years ago. In spite of these constant infections I just got on with my life, trying to shake off the latest bout of illness and taking the latest dose of antibiotics prescribed. My friends used to comment on my cough and, at work, a call or a meeting would often begin with somebody saying, ‘Oh, Mitch; you sound like you have a cold.’ Keeping active and playing lots of golf used to help me take my mind off how poorly I felt for most of the time.
My path to diagnosis started with a visit to my consultant about my bronchiectasis. By chance, he did some blood tests to check my immunoglobulin levels. Several days later, the results came back. My immunoglobulin level was >0.1 and I was immediately referred to a consultant immunologist at Nottingham Queen’s Medical Centre. I had my first appointment within 2 weeks, and to be honest, I was uncertain about what it was for. I spent 3 hours with the consultant, detailing my medical history from childhood to the present day, explaining all the infections I had had in my lifetime and how I never felt more than 80% well.
It was a lot to process when I was told it was likely I had CVID (confirmed by more blood tests) and I felt a mixture of emotions following my diagnosis. Discovering that I had been living with CVID all my life came as a shock, but in some respects I feel lucky to have been diagnosed at 33 years old rather than later on in life when my symptoms could have been far worse. My consultant explained everything so calmly and simply. She told me that I would have to start immunoglobulin replacement therapy and gave me the details of Immunodeficiency UK so I could learn more about my condition and the treatment. I also went to get my COVID booster and annual flu jab, and started preventative antibiotics.
Eager to find out more about CVID, I followed some Facebook groups. from another patient organisation, but to be honest, the stories that people were posting to these groups were fairly negative and didn’t help, so I decided to unfollow them and focus on the information and Facebook group provided by Immunodeficiency UK instead – I knew this was information I could trust.
To say I was nervous about my first immunoglobulin replacement therapy session is an understatement, but I was well looked after from the moment I arrived for my appointment. The staff explained the whole procedure, which mirrored the information provided by Immunodeficiency UK. Their website explains the risks (which are minimal) but, more importantly, the benefits of this treatment.
My first three immunoglobulin replacement therapy sessions were weekly; now they are every 3 weeks. My consultant rang to tell me that my immunoglobulin levels have increased from >0.1 to 11, which is considered normal. She is delighted with my progress and now my body is able to fight off infections.
I think that establishing a routine is crucial to having successful immunoglobulin replacement therapy sessions. As I work full time, my sessions take place on a Friday morning. Because each session takes around 3–4 hours, I take advantage of the day care unit’s wi-fi to continue working from there. This helps to keep my mind off the treatment, which is easy and comfortable. I’ve not experienced any side effects and I feel much better in myself already. Long may that continue!
Now I know that I’m on the right track, I have the confidence to continue my life how I like and without the worry of feeling poorly. I can be out on the golf course and supporting Derby County FC from the stands, feeling reassured that I will be OK.
The information and help provided by Immunodeficiency UK is extremely professional and answers all your questions. I like to be told things in a straightforward way, and the information on their website has been invaluable in helping me and my family understand what I am living with and how my quality of life will improve in the future. It has also helped me to explain CVID to my friends, so that they understand the condition too. It’s difficult trying to summarise CVID in a short sentence or to describe it when it pops up in conversation. Also, the support and help given to me by my consultant at Queen’s Medical Centre is superb. She is a credit to the NHS.