March CSS Awareness Post
This post is written in memory of Kevin Selig and in honor of his wife Amy Selig for who this series of Churg Strauss Syndrome (CSS) personal experience stories is dedicated. Kevin lost his battle but we continue to move forward to make the world aware of CSS and how early diagnosis leads to better prognosis.
Life really could not get any better
by Glenys Logan
Everything seemed perfect. My life was marvelous.
I am married to Frank who I have known since I was fourteen years old (he was eighteen). He was my sister’s boyfriend back then. I liked him a lot. I asked my sister if she would marry him as I wanted to be related to him. Well that did not happen and we all went our own ways. Eventually Frank and I got together. So as you read this, on the fifteenth of March 2015, we will be married for thirty five fantastic years.
After many years of having a wonderful life, living in Manchester and doing work I adored – working in a hospital for ten years where it was like one big family – I had to leave the hospital to move to East Anglia as my husband’s job changed. When I arrived there I felt really lost, because I did not know anyone, and every village and country lane looked the same.
To get to know people and the local area I got a job as a home help where I would go into people’s home and help them in every way. I enjoyed this job and got to know many people and the area. I found another job from a local place that was thirty minutes from me. They were adding staff and offering more hours to me. I really wanted to try this new position. I eventually got the job working full time with adults with challenging behaviours. It was very trying, but yes I loved it, and I worked there for twenty five years. Then it changed its services and closed down for people to have one-to-one, so I left. And then a job was offered to me by a manager of a home, for young Alzheimer’s patients Wow, perfect. I asked could I have two weeks off before I took on this role. Yes was the answer. Yipeeeeee.
My own personal life was so good. We were just about to pay our mortgage off (everyone’s dream) and we were due to go to Scotland for two weeks holiday. It could not get better. Oh, it was also my husband’s birthday the day we would leave for Scotland.
About six weeks prior to this exciting time, something began happening to me that I did not know. One night while I was in bed all warm and cozy, I was woken with the most horrendous pain in my left side (chest level). It was so bad that as quickly as it woke me up in agony it was gone. So as we do, I thought it was the way I had been laying and so I forgot about it. Before I go on, I was born with asthma and it was always controlled, so I never had an asthma attack.
Life carried on for about a week, again in bed, I went to yawn but I couldn’t. I kept trying for about five more times until eventually I yawned normally. How odd but it wasn’t important and I forgot about that. Another two weeks went by and three nights in a row I got edema – swelling in my feet.
This I did not like, so I went to see my GP. My GP is a young pretty female who I felt comfortable with and I can say whatever I wanted to with and we both heard what the other is saying. So I told her about the pain, the yawn (or not being able to) and now my feet. As we always did in our chats, I told her about my job. She knows I want her job so much, she always thought I was mad. I went on about our mortgage and holiday to Scotland; she also knows my husband well. So she decided to do a urine test, a chest X-ray and to run some blood tests. Well I eventually had all the tests done.
I was still so excited about what was coming up, clothes packed new things, new PJ’s, and my beloved perfumes. All was ready. I made an appointment to go back for results at my GP. Well I turned up for our appointment on Friday, was called in, we got straight down to business – bloods fine, urine fine, so we had a little chat about perfumes (lol) and I left. None of us mentioned the X-ray. It didn’t seem matter, they would come one day. I went home and we was leaving the next day for Scotland. I arrived home. My husband had left me a note that he had gone for a haircut and to pick some other bits up and to fill the car up. As I said we were already to go.
I thought I would spend some time on my computer, as I sat there feeling wonderful the phone went. It was my great GP. I thought odd, but then it kicked off. She said to me,
“Glenys, I sent you for an X-ray?”
“Yes,” was my reply, and I was feeling slightly odd.
She said to me,
“I am sorry but I had to phone you. When you had left the surgery (office), knowing you’re going away on vacation, I need to tell you the result of your X-ray has come through. I am sorry but you cannot go away, they have found shadows in your lungs and three nodules – two in left top lung one in bottom right.”
And she said she had made arrangements for me to go the next day to the McMillan Centre in our local town. I was in total shock. I remember saying to her,
“I am scared”. I thanked her and hung up.
I thought it was cancer – lung cancer. I knew it was. I had been a very very heavy smoker for far too many years.
I was on my own with this news I burst out crying. Oddly, as weird as it seems the first thing that came into my brain was I won’t see daffodils bloom again. Eventually my husband arrived home. I met him at the front door. He saw the state I was in and when I told him he also went white and quiet. I sat on the sofa and we cuddled each other.
I thought I knew this was it for me. I acted as though it was cancer it was terminal, I sat on the sofa – did not eat, did not move, did not wash – it was awful. The following day we went to the McMillan Centre and we were called in by a cancer nurse to see a cancer consultant, so what was I supposed to think. They was both so gentle and so nice. I hated them for putting me in this position, even though it had nothing to do with them. They very soon became my friends.
The doctor showed me my lung X-ray. OMG, what a mess. It looked like three golf balls in my lungs with a snow storm. She informed me she was sending me to the larger specialty Papworth hospital. I went there and saw a surgeon. We spoke and he said he was going to operate on my left lung, but not on the right, and that he would send for me. I went home still thinking it was terminal cancer. I could not function from fear; it was bad for me and very hard on my husband, I hardly ate or drank. And yes, this is awful even for me, I could not wash. It knocked me for six. I really was like that for a few weeks until the day arrived when I was admitted for surgery.
After a few days I was taken for a lung biopsy. That scared the hell out of me. I was then sent to theatre for the operation. I came back and was out of it for three days on morphine. My poor husband was there every day and I just slept. Eventually they woke me up and it was painful. I stayed there another week and was then sent home to recover. I could do nothing at home. I just sat, yet again, just to get over the operation and thought, what’s the point I am dying.
Eventually I was taken into my local hospital. I had become ill, not bad – just unwell. We were still waiting for results of biopsy results, but nothing. I was in Addenbrookes Hospital in Cambridge for another two weeks when a doctor came to visit me and I asked if the biopsy results come through. He said Yes and asked whether anyone had told me the results. I said No and was now very scared. He told me he would get my doctor who saw me at the McMillan Centre to come and see me.
I sat in bed with my husband, eventually the consultant arrived in the ward and as they were walking towards me I felt so sick. I was then informed that there was no cancer to be found with a big smile on their faces. I could not believe what they said and kept asking for reassurance. We all kissed and cuddled I got out of bed and asked, “Can I go home now?”
Yes was the reply, but they still had to find out what it was. I did not care I didn’t have cancer. So home I went feeling high as a kite. Eventually I was called back to the clinic and it was there I got confirmation of what I had. CSS was diagnosed from the nodules sample they had sent to a top professor and he made the diagnosis.
My new journey began. I was put on high steroids, which have made me a diabetic. I have also got chronic kidney disease, chronic fatigue and cannot walk too much because of CSS. I have had Rituximab chemo and I have now reduced my steroids to 2.0mg, hopefully reducing to nothing soon. I am now classed “in remission”.
It’s been a long hard road but I try my best. I will never get the old me back but I have learnt to be my new me and act accordingly. It is a long journey of ups and downs with many appointments. They are a much needed nuisance. I continue to fight and spread awareness of this awful disease.
For more information about Churg Strauss Syndrome and Vasculitis
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