I spent one full day at The Royal Brompton Hospital under the great care of the amazing respiratory team.
My day started full on with a weight, height and observation test. I was then put onto a spirometry test.
Spirometry is used to help diagnose and monitor certain lung conditions by measuring how much air you can breath out in one forced breath. You take a deep breathe and then blow until your lungs are empty, or in my case until you feel light-headed and blue. This is translated into a single line arc onto a graph paper.
I was then sent to the lung function department where I was put into ‘the box’ I was instructed to take several combinations of long, short, hard and soft breathes, whilst me sealing my lips tightly around the mouth piece, and with a nose peg.
Lung function measures how well you lungs are working and how much air is drawn in and exhaled.
My capacity has reduced by 1 litre since 2003
This was not a comfortable experience for me, so much so that I would panic and stop the test, or allow air in through me lips. The technician was obviously wise to these tactics and swiftly inserted a gum shield to bite down on, this helped but it was clear that I was not going to be complete all the test, so much so I was told not to try and given a nebuliser, whilst I was having my neb; the technician informed me that she would also need a blood gas.
Blood gas determines how well your lungs are able to move oxygen into the blood and remove carbon dioxide from the blood.
Normally this is taken by blood being drawn from an arterial vein, it can be an extremely painful and uncomfortable experience. This time it was taken from my ear, a small slit was made on the lobe by a very sharp blade.
The next test was a prick test, to determine allergic reactions to certain substances. I was told to wash my arms, a tape with numbers was stuck to me arm, small drops of the substance was dropped by the numbers, then with a sharp instrument each drop was pricked. I was left for 15 minutes to see how I reacted.
I wasn’t aware of serious my reactions were until the nurse came and yelped in shock, the doctor then came and asked if I was OK, I reassured them that I was fine and this was to be expected as my IgE levels are abnormally high in the region of 16,000.
Prick test a few drops of the purified allergen are gently pricked on to the skin surface, usually the forearm. This test is usually done in order to identify allergies to pet dander, dust, pollen, foods or dust mites.
IgE Immunoglobulin E (IgE) are antibodies produced by the immune system. If you have an allergy, your immune system overreacts to an allergen by producing antibodies called Immunoglobulin E (IgE). These antibodies travel to cells that release chemicals, causing an allergic reaction. Variations in the upper limit of normal total serum IgE have been reported: they can range from 150 to 1,000 UI/ml; but the usually accepted upper limit is between 150 and 300 UI/ml.
As my IgE levels are so high, I have been diagnosed with Job syndrome.
Job syndrome, autosomal dominant hyper-IgE syndrome (AD-HIES), also known as Job syndrome, is a condition that affects several body systems, particularly the immune system. Recurrent infections are common in people with this condition.
The final test was a CT scan of my lungs.
I had a consultation with Dr Menzies-Gow, a consultant in respiratory medicine. The Dr agreed that the best route for me is to try mepolizumab injections.
Mepolizumab injections is a class of medications called monoclonal antibodies. it works by blocking the action of certain natural substance in the body that causes the symptoms of eosinophilic asthma.
Eosinphilic asthma is a sub type of asthma that is often severe. It is commonly seen in people who develop asthma in adulthood, although it may occur in children. Asthma is a chronic lung disease in which diseased airways are infiltrated by inflammatory cells (and thus thickened) and obstructed by fluid and mucous.
I hope you found this blog informative and useful. Thank you for taking the time to read this.
Take a breathe,