My journey to diagnosis
As a child I was healthy and loved doing sports and being outdoors. After my first pregnancy, I seemed to get regular colds and flu that often turned into #pneumonia. My body would become painful, with cold fever and a very high temperature to follow. I attributed the regular colds and flu to stress and having young children and a busy life style. After coughing for months and having cold and flu symptoms for a prolonged period. After listening to an #asthma awareness campaign on the radio I came to the realization my symptoms were similar. Often I was out of breath and wheezy, as well as the continuous coughing. When I had pneumonia, I had such bad night sweats that I had to change my pajamas during the night. During an appointment with a #pulmonologist it was confirmed that I had asthma.
A couple of years later my pulmonologist referred me to a gastroenterologist, as I regularly battled with my throat and voice. A gastroscopy, with a duodenal biopsy were done and the results of the pathologist were that the features were in support of in-situ follicular lymphoma.
The gastroenterologist referred me to an oncologist, who requested a laparoscopy and bone marrow test. All test results came back negative and I was elated that I did not have cancer. The lymphoma scare, made me change my diet and lifestyle to ensure I lived a healthier life. After a bout of pneumonia and further blood tests, the pulmonologist tested my immunoglobulin A (IgA) levels. The result came back as less than 0.05 g/L. No further IGG sub class tests were done. He explained to me that people with this deficiency, lack a type of antibody that protects against infections of the mucous membranes lining the mouth, airways, and digestive tract.
The treatment will be symptomatic, with antibiotics. It felt to me, as if I could look through a window at a sick person and catch a virus. The moment I start to feel sick and feverish I have to get antibiotics, as I do not recover on my own. During last year August, I got sick again and after numerous visits to my GP and pulmonologist, decided in early January I could not continue being sick and feeling the way I was feeling. I constantly felt totally exhausted. I had to do something. It felt as if my body rebelled and came to a halt.
I could not run anymore and could only breathe shallow. My chest continually burned and I had cold fever all the time. Then I went to see a pulmonologist, that was also a physician and from there was referred to a haematologist. Further blood tests revealed that I also have low levels of S- IGG subclassesG2 and G3. The diagnosis was #CommonVariableImmuneDeficiency (CVID), which is a disorder that impairs the immune system. People with #CVID are highly susceptible to infection from foreign invaders such as bacteria, viruses and often develop recurrent infections, particularly in the lungs, sinuses, and ears.
Symptoms and peoples’ reaction People often ask me : “Are you sick again or why are you still sick?” At work people told me, “We knew it was you coming round the corner, because we heard the coughing”. “It is because you exercise and run that you are always sick!”
(It made me smile, my running actually keeps me stronger). When I answer the phone, people will often say, “You sound terrible, I can hear you are sick again”. People told me that it is all the antibiotics and cortisone that destroyed my immune system.
A doctor explained the effect of CVID on a person’s body, by saying; a normal person walks on a flat road, but a person with CVID’s, body claims stairs all day long. Even though I have a low grade infection most of the time, I still look healthy.
Diet and lifestyle
All processed foods are excluded from my diet and I try to eat nothing that comes out of a packet. My diet consists of fresh fruit and veggies and I try to drink lots of water, as well as two cups of green tea and only two cups coffee per day. All preservatives are avoided and I hardly drink any alcohol.
Exercise definitely makes a big difference in my life. I avoid gyms and only exercise outdoors. Sometimes when I feel sick and go for a run, it feels as if all the toxins are flushed out of my body. For me exercise, has to be high intensity aerobic exercise. Even when I have pneumonia, I will still try to walk. I try to stay away from air-conditioned environments (not always possible, especially with open plan offices) and avoid people that have colds and flu.
Treatment CVID can be treated with Polygam infusions. My complete lack of IgA would make infusion of intravenous immunoglobulin (Polygam) a risk for #anaphylaxis, as it does contain IgA and my body does not make its own IgA. I have been on prophylactic antibiotics for the last three months. Using a saline nasal douche every night on a permanent basis definitely makes a difference.
I also use a cortisone nasal spray and take a montelukast as part of my chronic medication. A #montelukast reduces mucus production, inflammation and narrowing of the airways and so helps control asthma. I also battle with severe dry eye syndrome and have to put drops in my eyes hourly, when in an air-conditioned environment; otherwise, I get ulcers on my corneas.
The journey until I was diagnosed was a long one. It was frustrating that no doctor could diagnose my situation correctly for many years. It is a great relief that I have at last been diagnosed and now understand why I often get sick. At this stage, it does not bother me to have a sore throat, blocked ears or not feeling 100%. I am happy to be alive and be able to run and realize there are many people that have more serious health problems than me.
Many unnecessary tests were done over the years, exhausting medical aid savings early in the year and not adding value at all.
It is very important to see the right doctors and specialists that are aware of primary immune deficiencies.
My greatest wish is that a cure will be discovered in future.