Paul remembers being regularly unwell from the age of seven. He was eventually diagnosed with hypogammaglobulinemia in his early thirties.
I am 62 years old, married, with two daughters, three young grandchildren and two Cocker Spaniels. I took early retirement about four years ago after 40 years in banking. Born in Rotherham, I moved to the North Yorkshire coast with my family in January 2020. We also own a townhouse in a beautiful village in the south of France. I would usually drive down to France over three days and spend a lot of spring and summer there. The restrictions surrounding Covid-19 prevented me from doing that in 2020, and again this year. I am hopeful that I will be able to return to France in 2022.
Being regularly unwell
I remember being regularly unwell from the age of about seven, usually with sinus and ear infections (the latter usually very painful) and making frequent visits to the doctors for antibiotics. In my late teens and early twenties, I began to suffer more chest infections than was normal. I had three bouts of pneumonia in my mid to late twenties. Despite the pneumonia causing some damage to my lungs, I was quite fit, playing football, cricket, rugby and tennis, and I enjoyed long-distance walking.
The ear infections began to get worse in my late twenties, until I lost my hearing and had to have hospital treatment owing to glue ear/otitis media. At hospital, I was fitted with ‘t-tubes’, which are much the same as grommets. I always seemed to have colds and flu for longer than other people, and many holidays were difficult to enjoy due to illness.
Diagnosed with hypogammaglobulinemia
A few weeks before the birth of our second daughter, in the summer of 1990, I was taken ill with severe stomach and chest pains and rushed to the Edinburgh Royal Infirmary, where I spent about four weeks. I had contracted cytomegalovirus, which had caused my liver and spleen to enlarge and ultimately contributed to a partially collapsed left lung. Following many tests, including bone marrow biopsies, I was initially diagnosed with leukaemia, so the prognosis wasn’t great. A few days later, doctors decided I didn’t have leukaemia but hypogammaglobulinemia. I was fortunate in that the Scottish National Blood Transfusion Service was based at the Edinburgh Royal Infirmary. They had taken an interest in my case and continued to investigate possible causes of my illness.
After my diagnosis of hypogammaglobulinemia, I attended hospital for three-weekly immunoglobulin infusions. My employer was totally understanding and supportive, even though my treatment meant I was absent for half a day every three weeks, plus any time I needed for hospital appointments.
Having access to home immunoglobulin therapy
We had to move from Edinburgh to Birmingham some 18 months later. I was placed in the care of Heartlands Hospital, which offered ‘home therapy’. Since then, I have been accessing a vein with a butterfly needle to deliver my immunoglobulin intravenously at home. My wife removes the butterfly needle at the end of the process. I have rarely missed a vein in 31 years!
Generally, the need to infuse every three weeks didn’t get in the way of my work. I used to infuse on a Saturday evening as I tended to feel a little ‘slow’ for 24 hours or so afterwards. This meant that by Monday morning I was fine for my commute to London, which is what I had to do for most of my last 10 years of work. When I needed to work abroad, and in particular travel long distances, I had to be more flexible but also make sure I wasn’t away for longer than three weeks and a couple of days. When in France, I was often on my own as my wife still works part time and our dogs are too old to travel, so I would need to make sure she was coming over or I would fly home for a few days, infuse and then go back. I do find the sun and warm temperatures in France are good for my general health. I never travel without a supply of antibiotics just in case.
Importance of diagnosis and treatment
My health, post diagnosis and treatment, has been so much better. I still get the occasional cold and subsequent sinus and minor chest infections in the winter months (although since moving to the coast this hasn’t been the case and I am not sure if that’s due to the sea air or the need to shield since spring 2020). Perhaps the only downside to being generally well has been that I steadily put on weight, probably due to my body not having to continually fight infection. That’s my excuse anyway!
Feeling nervous about the future
I will admit to being nervous about the future, for me and others with an immunodeficiency, until immunoglobulin products can be proved to give adequate protection against Covid-19 or an alternative treatment is found. The ability to travel abroad remains uncertain in the knowledge that vaccines against Covid-19 are not fully effective, even though I can produce evidence of being vaccinated. Like everyone, I hope the virus will simply disappear but, in the meantime, I continue to avoid busy places.
Posted July 2021