Continued from PART III – Creepy Answers
‘YOU HAVE CHURG STRAUSS SYNDROME…THERE IS CURRENTLY NO CURE’
Even though I had been informed in the most gentle and empathetic manner, the word ‘incurable’ shocked me to the core. Was Dr Flood joking? Hardly any diseases are incurable these days. And how could a few allergies suddenly morph into such a life threatening condition? It just didn’t make sense, or seem real.
The syndrome was first described in 1951, coincidentally the year I was born, by pathologists Dr Jacob Churg and Dr Lotte Strauss. They were working at Mt. Sinai Hospital in New York. The fourteen patients they investigated had all died, as it was prior to the advent of lifesaving, anti-inflammatory drugs, ie; Prednisone. Completely illogically I felt resentment towards the pair when first diagnosed, as if their discovery had created the monster! It turns out that they were the most delightful, kindly people and leaders in their field.
The condition is sometimes dubbed Pandora’s Box, because it manifests in so many unpleasant ways. Virtually any part of the body can be involved. It is often many years before initial problems of asthma and allergies progress to the full blown syndrome. There do not appear to be any genetic factors involved, so I can’t blame my asthmatic Grandmother. Just random luck I guess. You might win the lottery or you might get CSS (OK, bad joke.) It does appear that if the lungs are affected, remission is harder to achieve nd maintain. Oh dear, after all my youthful smoking I dodged a bullet there, because mine escaped damage.
Since my diagnosis there is a new, preferred name for the syndrome;
Eosinophilic granulomatosis with polyangiitis ……good grief, who could remember that? It will always be Churg Strauss to me, or Church Mouse Syndrome as someone dubbed it due to the cost of treatment in countries such as the US.
With two such vital organs as my heart and brain being attacked, a conservative treatment plan was out of the question. Before being released from hospital I received high doses of Prednisone to reduce the damaging inflammation, and chemotherapy in the form of the drug cyclophosphamide to suppress my out-of-control immune system. The drugs were initially delivered by infusion.
It was envisaged that treatment would continue for about 18 months via oral steroids (Prednisone) and chemo. My medical team had waited until they were very sure of a correct diagnosis, as both drugs can produce serious side-affects. Now I am as vain as the next person, but at that point all I cared about was being able to attend the launch of my book, scheduled for early the following year in Great Malvern. The fact that I might lose my hair due to chemo and gain the ‘moon face’ of prolonged steroid use seemed relatively unimportant. My doctors smiled encouragingly, but refused to give any guarantees regarding my travel plans. Churg Strauss Syndrome is a complex, contrary disease and even after initial remission, relapses are common.
I cannot speak highly enough of The San and its kind, caring staff. Nevertheless, it was good to say goodbye and wobble out the front door a few days later. What joy to be at home with Rob, soon to be dubbed Dr Bob. The darling man doled out my many tablets , made sure I drank enough water to flush the chemo residue from my system, and encouraged me to do some gentle exercise. More importantly, he helped me cope with the horrors of Prednisone!
Despite the sleeplessness and raging hunger this drug produces, I was determined not to gain weight. When I woke in the night I would make a cup of tea and eat a couple of dry biscuits. However, as soon as dawn broke poor Dr Bob would hear a plaintive whimper; ‘Is it breakfast time yet? He would hop out of bed without a word of complaint and bring me breakfast on a tray. It was nectar of the Gods; a mug of tea and a large bowl of rolled oats and fresh fruit. Next came coffee made with freshly ground beans. The meal sustained me for hours and helped me avoid snacking.
My steroid fueled, sleepless nights did have some benefits. I kept my laptop beside my bed, and was able to organize the remainder of the book’s photo rights during northern hemisphere business hours. And when emails full of manuscript queries from my London editor began to arrive I responded to them straight away. Not surprisingly, I gained a reputation as a most responsive and efficient author.
Mind you, there were still a few cognitive problems when I first came home. For example, I had forgotten how to turn the radio on. And when a group of old friends visited from Sydney an even stranger thing occurred. I was showing them around our unfinished new house when I had a complete mental blank. I simply could not remember what one of the rooms was for (it was the laundry).
The garden was a great solace. Lavender is said to reduce anxiety and promote sleep. No scientific basis for this of course, but at least it made me feel better to be surrounded by it.
Everything was going well except for one thing. Ultrasounds showed that the fluid around my heart had not cleared and had actually began to increase slightly. The solution was as strange as my disease, and eventually landed me back in The San.
TO BE CONTINUED. DON’T WORRY…..NOT MUCH MORE TO GO
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