White Rock ,
British Columbia

Share this story:

My Sinus Story

I was born and raised in the Swiss Alps. I grew up on a farm in a small town named Klosters.

I recall being hospitalized at the age of 16 and 17 due to severe tonsillitis and respiratory issues.

In hindsight it all makes sense as my father had severe bronchial asthma and was in and out of the hospital/sanatorium while I was growing up, I only knew my father as being ill. My dad’s illness encouraged me to take on a career in the medical field. I went on to study what we call back home Doctors Assistant/Lab Technician, in short “Office nurse”.

I came to BC, Canada in 1980 and have been suffering with sinus infections on and off. I have seen several ENT’s over the years before I got to my Hero Dr. Amin Javer.

In 2002 Dr. Javer diagnosed me with AFS (allergic fungal Sinus disease) and that’s when my sinus journey really began. Dr. Javer performed my first sinus surgery in 2004 and we were both hoping that would be the end of my sinus ordeal.

Unfortunately I had recurrent acute Rhinosinusitis with severe debilitating frontal sinus headaches and facial pain.

My family doctor at the time refused to refer me to an immunologist and didn’t believe my sinus problems were severe enough to pay attention. Having grown up with a father that was always sick, I knew there was more to it and that I was immune compromised.

I made friends with my body long ago because it is the only one I have got; therefore I do know my body best. Family Doctors need to listen to their patients more closely and they also should be taught more about the Immune system, recognize signs and either order tests accordingly or refer them to a specialist. Too many patients are treated for “symptoms” rather then a diagnosed disease/illness and that is like driving a car with one wheel constantly on the verge of falling off.

In September 2005 once again I was sitting with Dr. Javer getting my sinuses flushed and we discussed other causes and tests, which he ordered immediately.

The tests came back positive for Primary Immune Deficiency Disorder (PIDD) and were confirmed with two different Immunologists.

The specialist initiated IVIG (Intravenous Immunoglobulin) treatments and the order was to be carried out by my GP. He was to call Delta Hospital to arrange for an immediate treatment, but that call never came. I contacted my GP who refused to take my call, so I phoned my Immunologist and he personally put the order through to the Hospital. My GP’s lack of action resulted in a delay of my treatment, hence my patient relationship with my GP who was also my friend, ended.

In June 2006 I had my second surgery and my third was in April 2007. It was after the last surgery when I lost the sense of smell and taste.

The only reason I believe I didn’t need surgery again up until a small one now, is due to the ongoing almost weekly visits to the ENT clinic and keeping my sinuses clean/clear and under control. We sinus disease patients are daily at risk from getting new and recurrent infections, due to pollution, aka diesel fumes, leaf blowers, and or all kinds of air borne organisms.

I owe my life to Dr. Javer, he is the most caring, and compassionate, knowledgeable, amazing doctor and human being I have ever come to know as a patient and medical professional. I have the utmost respect for this man and he is my lifeline.

I am in continuous care/treatment with Dr. Javer and together with him and his team we are managing to keep my sinuses under control, but it is a life long commitment. I also get lifelong IVIG treatments a Blood Plasma product that I get administrated every 2 weeks at Peace Arch Hospital in White Rock where I live.

My sinus journey is far from over, well one could say, I got the “nose” for it.

We need more Awareness about Sinus Disease and what and how we can get our GP’s to pay more attention and recognize when there is more to a “oh it’s just a sinusitis” attitude, and off you go with another prescription of antibiotics.

I had many different family physicians during my life here in BC, there is/was not one GP that was aware and had knowledge of my sinus disease and my immune deficiency.

Just because they don’t have other patients with the disease, does not mean they don’t exist, they just haven’t been diagnosed yet. Thinking about how fast we are in and out of a GP’s office today is alarming itself, patient care has long taken a back seat.

If you are not your own advocate or have a friend or family member that can speak for you, you will be washed out like the sand on the beach every time a new wave comes in.

It is very disturbing to me in this day and age where we have advanced so much in medical technology but we don’t have the awareness of the medical system, the front line, the primary care sector to recognize severe sinus diseases and or immune deficiency disorders.

Dr. Javer and his ENT clinic is the reason I have still a place in this society, he gives me hope and ongoing support.

I am living as well as can be with invisible chronic illnesses.

Last but not least, my greatest support comes from my loving and amazing husband and soulmate Allen, he is my number one Hero, without him I would truly be lost, the same goes for my daughter Samantha.