April Churg Strauss Awareness Post — Donald

Xw4pb9SNJz4-GedBZdO5fEalmGUYvEDkhih9e2cDQNkCGBV2PYksoNMLD1WMvtT5RdW7CWaSukwjGtAWZa1oPvSYOzdJsRbBgrftJAsNUDr7BxiZrkBt8PfivfvboDnesRjt93fTsgNmqvRATupFs3dC7EtfYOdQpl5EMqFgaEtIqZqvQ1pTvMSQTmbsgeOUcCjkeg1JbMy name is Donald and I live in East Sussex, UK. I have just been diagnosed with CSS after many years of not knowing what was wrong with me.

I was always a very fit and healthy man. I worked very hard to provide a good lifestyle for my wife and three children. Being the eldest of five siblings I was the ‘strong one’.  At the age of 29 I decided to give up smoking. I was not a heavy smoker but my wife gave up so I decided to do the same.

On giving up smoking, I developed asthma and suffered from a constant runny nose and chesty coughs. To be honest, I thought it would pass once all the nicotine was out of my system.  However it didn’t go away and it resulted in me developing nasal polypsnasalpolyp and every five years I would go into hospital to get them removed. This would give me relief for a while but it would return.  I was told that I was allergic to dust mites and my wife and I would spend most weekends vacuuming the house to get rid of these. I even brought a robotic vacuum cleaner so that we could use it every day to eliminate the symptoms!

Seven years ago, I was working as a Senior Buyer at a joinery company. I traveled the world to source joinery products, often traveling to third world countries to visit factories where they were made. On one of my visits, I went to Northern Brazil. While I was there, my agent and myself were taken ill with diarrhea and vomiting. We were admitted into a local hospital and put on a drip. On my return I got a really bad chest infection, gCFTNDZOpSC7IYfnJAVu3S8vAWGlSa1QxE_jeGrbVzHad3A5yThnqv24a-k_6_ZNSWW7-HOzLM2t0y4Q67C0IWvYdqJKKTYaQj7JZGDfdnYKeHazFR64bv9l0kPHYUy9e9Yb0fBxuBRYzkCPen380rY3r5pj_wi141WpDjtqr5VF6jGJOWuwsdyp5AJruSL8uV-Lwt1Quwhich would not go. From then on I suffered regularly with a terrible cough and constant chest infections. I had so many antibiotics. After taking antibiotics and steroids I was told that I had chronic sinusitis. The polyp operations went from five years to every two years. (Ten operations in all.) At this point I suffered with my nerves. I had a pain behind my right eye and it affected the nerves down my arm. I would twitch a lot of the time. I could not concentrate. If I tried, the pain behind my eye would be intense and I suffered from extreme fatigue. This went on for years. I eventually had to be treated for depression.

I was still trying to hold my job. It was a very demanding job. I worked 70 hours every week and it was very stressful. I had seen the Company Doctor who had diagnosed chronic sinusitis. In the end I could not perform as the company wanted me to and I was asked to leave if I could not do the job! So at the age of 55, I retired.

For two and a half years I stayed at home while my wife worked full time. My sinusitis did not improve and I lived on antibiotics and steroids.  We decided to try a move to Spain. We thought maybe the warmer, drier climate might help my health, so we sold our house and moved to Southern Spain.

7V_bsjUByRN5p6tygtP7EiAT7piX6XAACuopU-fQcwf1kND3o-AtzU5uEUNgdNs0olaqdo1QCCSL3f3X1wZwQgqIE3XLSY9kMQ0UpkjyfSzVHXgde0rQIJ5rAk7242ApyDpIVr-jxy65Gu9MSSsBeItVIS9cWfqvlUMwTXgenU2rNoCkwGt2SOnL9E_zMo4KKr428wG4ZFour weeks after our arrival I developed severe pains in my stomach. I thought it was the change of water and food but after ten days I was admitted to the local hospital with burst appendix. My appendix had burst and gone gangerous! The whole experience was so traumatic that we decided we needed to come back to the UK.

Financially we had suffered with the move so we brought a small flat and I found a job for three days a week to help out. It was not long before I started struggling with my health again. I was so tired and my days were becoming very ‘black and white’ instead of in colour.

In June 2014 I had another nasal polypectomy. (My 10th). Usually I would get some relief after the operation but this time I felt terrible. I lost hearing in my right ear and started to get a middle ear infection. I returned to the hospital and the Doctor burst my ear drum and put a grommet in my ear. This happened again and I suffered from terrible pains in my head. I kept returning as I thought something had gone wrong with the operation. I was then diagnosed as having severe allergic rhinitis.

Just before Christmas (2014), I developed a rash all over my body.zaXkzyqg_Y_WA0woChPG7gYftbWwuyTev9OInYB3G3VqFqSGAWP0JNJ-iEavjONL2kSEUud_HMihhyR-k5IuTyf7skRBRx4Fk6FKGVobOSKpJym-HyVuDRtlMebdSR6lPEz23FrJ4Mjo1mrgeYaXxnRWmh5Y2oh7i34LVU2eXYQxWkvrlvYJU6_I6JlWLKpaw5amYe4MIWh8etJus9LlPZI NVDidLvzBBVKihIz8h3Kgjm7utXfeDxjlH9mF36NXuCKGzuj3GTrAHbMNe3HTzw2YV5Ywt7YYNYL1lTE48f3lE3TKN7nvCb6EyW0tIk8B7bigVBEK4RHGfhLD-V0wAjRxQLdf03lye5ZIV_dbLgu0UJa7bqg93gxn4D1oRp_N6hUAh6ki0IPK8VcDK9OsP9uhI-Dws1Ry g5DpX1q8Ksax4P2fFTLKd5Gqq3-qtPcAHSVLdvKpQXG85UiSRd1AfK-KvyYmjNfT1C3tGLK6cUBWSh5v6SPNYGk6ysoik3CBK2At2LZXXh-evPT7_-lSX-Iah3P1zyZiOBpQVOIetMv3NHVfe6gvHTK_BsaCTbqXdVhlaAaHpIJ-qKsowJ5I3nBWWj5INEspYhFQJVMzH2MeDjJmc3yy6W3

It affected my joints and muscles. I went to the out of hours Doctor. He told me I should see my GP after Christmas but in the meantime he prescribed some prednisolone and antibiotics. The rash went down but returned with vengeance once I had finished the steroids. I went to my GP and he told me he thought it was toxins in my body and advised me to go home and drink lots of water. I did this and it didn’t get better, it got worse. Eventually in desperation I went to A & E. It was a good decision! I had to wait for 4 hours to be seen. I was in agony all over my body. Once I eventually got through to see a Doctor, they tried to take some blood from my vein but they couldn’t get any. She couldn’t understand why I had good veins but she couldn’t extract any blood from them. She called for another Doctor. At that point they realised I had vasculitis and my blood vessels were collapsing.Labours Investment In NHS Not Getting Through To The Front-Line.

I was admitted and at last, I was taken seriously. I was diagnosed with Churg Strauss Syndrome. When I read about it on the internet it was describing my life!

I am still having many tests to see what damage the CSS has done, but so far, my lungs are damaged, my heart is 50% damaged, my nerves in my feet are damaged and am still waiting for other investigations to be done including an MRI on my heart, to see what they can do, my head and my stomach.

I am now on Cyclophosamide and 60mg Prednisolone and another fourteen types of medication each day……but……..

I will fight this disease and although I know my life will never be the same, I will make the most of each day. I have a strong faith in God and I know that he is in control so I have no fear.  I have been so blessed to find all the Churg Strauss friends who have encouraged me and given me hope that there is a future. My desire is that I will be the one who is encouraging others very soon once I am stabilized.

For more information about Churg–Strauss syndrome (CSS, also known as Eosinophilic Granulomatosis with polyangiitis [EGPA] or Allergic Granulomatosis:

 

In the UK : vasculitis-uk-logo

In the USA:  csslogo

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Want to see more CSS monthly Awareness Posts and Stories?  fun2

We write these posts in memory of Kevin Selig who lost his battle with CSS  in June of 2014.  His memorial page is located here.

 

Return to Karen in Wonderland CSS Awareness site with further readings and informational links on CSS, Vasculitis and Chronic Illness.

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