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At age 63 I started an incredible journey – not one I had planned or expected or even wished for.
I was diagnosed with CSS – Churg Strauss Syndrome (CSS) – Eosinophilic Granulomatosis with Polyangiitis (EGPA)
It has taken me 18 months to pronounce the proper name for this.
It has taken me 18 months to fully accept that I have this.
In my 50’s I started THE COUGH. It began at the start of winter, so a quick fix of steroids sorted it out. The years rolled by and these annual quick fixes worked well, then I needed this fix every 6 months to control THE COUGH. Then every 3 months, then every month, finally as soon as stopped taking steroids my cough returned. I eventually asked my Dr to do something as THE COUGH was so bad I used to stay in bathroom until I threw up to clear my lungs so I could breath again. He sent me to a Respiratory doctor who had x-ray done and the results came back in August 2013 that I had Bronchiectasis.
My son and daughter in law had their first child in Australia in September, and I wanted to go and see them, but could not until Mid October as my daughter was having her 2nd son by Caesarian on 9 October. I went to Australia for week and came home and back to work again. All was well – so I thought.
One week later I woke up at 1.30am Saturday morning struggling to breath – asthma I thought and took my inhaler, still could not breath so sat up and took another, still no good so went into lounge where husband followed me and said should he call an ambulance. No I said, just see how I am. After 5 minutes I told him to phone ambulance as realized I was not wheezing at all, just hard to breath. Paramedics arrived, tested my heart, gave me a shot of angina medicine and told me they were taking me to hospital.
Now the fun begins, taken to ER and Doctors took blood test to see what was happening with my ‘suspected heart attack’. The ER Dr came back and stood in the doorway looking at me and said “ you look too good to be here” with a puzzled look on his face, then came back and said they would like to keep me in for more tests, they moved me to opposite the work station and had more tests done and they have me an injection in stomach which left me with the most wonderful bruising for a month. After 2nd blood test they came to me and advised they were admitting me into CCU. Apparently my Troponin levels were at a record breaking, and machine breaking 50,000. Normal levels are 0 and you have a 50/50 chance of surviving heart attack with levels of 20,000.
In CCU they called out the after hours ECG scan people, had that done, they Dr came and told me in morning I was going to have an angiogram done, if it was found I needed stents in my arteries they would do it there and then, if more drastic surgery was needed I would be operated on immediately..
Well my angiogram Drs name was Dr Heaven – how appropriate I thought, well he came into my room after tests were done and he was scratching his head – and said to me. Your arteries are fine, so we really do not know what is wrong with you and why your troponin levels are so high. We are having a meeting to discuss what do with you, after the meeting it was decided to send me to Auckland Hospital to have a heart biopsy done. So in Ambulance I go and no sooner had I arrived at the hospital when the heart Dr saw me and told me I would be going to theatre in ½ hour. After biopsy was taken I was sent back to Middlemore Hospital to await results. That afternoon a Dr came and saw me and advised that they had narrowed down what the problem was and at this stage it was not confirmed but thought it may be Churg Strauss Syndrome, but one final confirmation was had the main Dr would see me. The main Dr walked in 10 minutes later to advise that it was confirmed that I had in fact Churg Strauss and that they would be starting immediate treatment. The same drugs as cancer patients, Cytoxan and Prednisone . My IV prednisone was started that very afternoon and Cyclo was started the next morning.
I was in hospital for 3 weeks, had 6 sessions of cyclo, tablet steroids at 80mg per day. After cyclo finished Imuran was added. It is now 20 months since diagnosis, I am currently on 150mg Imuran and down to 9mg prednisone.
In myself I feel good, so glad that I was diagnosed and that I have responded well to treatment. That is not to say that my body has not enjoyed it as much, last year had compressed fracture of vertebrae, this year my sciatic nerve has caused great pain, but now that has subsided.
I never know what is around the corner, but am grateful for every day that I have, and have definitely made sure that I stop to ‘smell the roses’.
As I said when I started I never planned, expected or wanted CSS, but it helped me realize how lucky we all are that we can reach out to each other and help and support each other.
Kevin Selig was diagnosed in January 2014 with Churg-Strauss Syndrome and fought a courageous battle against the disease. Kevin passed away on Saturday, June 21, 2014, at the Mayo Clinic Hospital in Jacksonville, Florida.
We in the CSS community were saddened by the loss of such a vibrant human being and reminded how our illness often goes undetected until too late. Glenys , a very brave CSS warrior, set us into motion to bring awareness to our disease with a challenge to raise awareness of Churg Strauss Syndrome by posting a story on the the 1st of every month in an effort to let the world know we exist and we want to help others obtain earlier diagnoses.
Please take a moment this month to think of Glenys who put us into motion in this awareness campaign as she struggles with an ongoing flare and hospital admittance. She is a brave and amazing women and we are all sending her positive thoughts for a positive outcome and have her quick wit and amazing personality return back to the forums with us.