In hindsight I think I knew something was wrong years before I was diagnosed
I had numerous ear, throat and chest infections from childhood to adulthood, and further infections, including sepsis, far more often than any other family member or my peers. Furthermore, any cuts and grazes, in fact, wounds generally, seemed to become infected easily; broken bones (of which I have had more than my fair share) took a long time to heal.
I was diagnosed after spending three weeks on a ventilator in an induced coma with double pneumonia; my wife was informed while I was still in the coma
On our wedding anniversary, doctors told my wife that they couldn’t do anymore for me and were looking to turn off the ventilator the next day. Fortunately, a consultant immunologist (Mr Wallington) from Southmead Hospital, Bristol, came to the intensive care unit in Gloucester to see another patient, and my consultant asked him to take a look at me. After speaking to my wife about my life illnesses, Mr Wallington said he wanted to try something overnight. Luckily for me, that was the turning point.
My reaction once I was able to absorb everything that had happened to me was one of shock at the diagnosis but also a sense of huge relief that there was an answer and a way forward.
My family have been affected in many different ways because not only has there been the CVID to cope with but I have also been diagnosed with chronic lymphocytic leukaemia (CLL)
I had numerous operations on my right ankle over a period of 10 years, resulting in a below-the-knee amputation, which showed gangrene cells in the ankle. About five years later, I had to have my left leg amputated below the knee, with a diagnosis of unresolved osteomyelitis (from a fall at home when I banged my shin, resulting in the sepsis mentioned above).
I have been admitted to the intensive care unit nine times over the years. Five of these admissions required a tube to be inserted into my airway. I have had epiglottitis twice, and, more recently, bilateral vocal cord palsy. I have also been treated for two pulmonary embolisms and numerous, further pneumonias.
I mention all of this because, as a family, we have dealt with and tried to move on from all of these setbacks
I would hate to even try to imagine where I would be now without the support of my wife and family; they are always supportive and helpful. We are a very proactive family in every respect. Clearly there is the mental anguish for myself and my wife in the main, but also for my wider family, and we cope with this by talking openly and being upfront about our feelings and thoughts.
Life for me is one of success and a determined effort to try to move forward in every aspect: I refuse to give up or give in
I still, at the age of 71, try to attend the gym regularly and swim with one of my daughters and sometimes my grandsons. I like cooking, gardening and researching my family tree (I have traced the male side of my family back to 1503). I guess what I am trying to say is, keep going and don’t give up.
My advice to anyone who has been diagnosed with a PID would be to take on board everything you can to help understand your condition
Listen to advice from professionals and others with the same diagnosis as you. What they have to say will help you make up your mind about the best way forward for you, as an individual, to confront your condition and move on with your life.
I wish I could be in a position to help other people diagnosed with a PID understand that it is not the end of the world but in fact a new beginning; to help them move on and away from the life they had before diagnosis and treatment.
PID UK has helped me on my journey. I can turn to them for advice, help and information about my condition, available as easily accessible, published research. There is always a friendly, helpful person at the other end of the phone to answer any questions I have.
Posted May 2020