Life Begins at 40
by Julia P
Life should have been going well. I was turning 40, my three young girls were growing up and we had taken the plunge and moved to a beautiful island in New Zealand. We had so much to look forward to. So why was I feeling so tired and lifeless all the time? Was my life really over at 40?
I went for counseling. I went to an osteopath. I tried an herbalist. My friends told me to take it easy because I was stressed. I was losing weight fast, but it seemed pretty good to be getting my body back after having kids.
We decided a holiday would improve everything, so went to Fiji. Once we reached our island paradise I realised I couldn’t breathe. It felt like asthma, which I hadn’t had for years. I was able to speak with a Doctor over the phone and some prednisone was shipped out to me the next day – wow, I felt great! By the end of the holiday I had tapered off and my friend took one look at me and said ‘you’re sick again’. She was so right.
A few more Doctor’s appointments; a few more doses of prednisone. I could get a pretty high peak flow reading but still couldn’t breathe. My arms and back started aching and I wondered how we could possibly have bought a new bed which was so uncomfortable!
Then the night sweats and fevers kicked in. I couldn’t get through the days without a sleep. I couldn’t eat. My husband was enticing me with beautiful meals of freshly caught snapper, and I had no interest. All I could swallow was yoghurt. None of the GPs I was seeing could work out what was wrong, and I felt like such a fraud saying I ached and I was tired – isn’t that normal for the busy mother of three children? I decided to try one last local Doctor. Dr Barnett Bond was a retired surgeon and practising as a part time GP when he wasn’t growing grapes to make his divine Miro wine. His approach saved my life – finally someone believed what I was saying and he methodically set about finding a diagnosis.
Thankfully it only took a week and a half. The bloodwork showed eosinophils of 4.57, then a lung xray showed infiltrates. I had found Churg Strauss on the internet but it was too scary to read too much in case it was something I really did have. One beautiful morning, I was walking on the beach with my baby. It was impossibly difficult to push the pram up the sandhills. I went home for a sleep, and was woken by a phone call. The Doctor was saying I had to go to the hospital. Not next week or next month, but, “Next ferry. They’re expecting you.” I was told to pack a bag; I might be a few days. I was hysterical thinking about leaving my kids and terrified about what might be wrong.
Once I got to hospital I was put under observation. I was given pain killers for my aching arms, and a nebuliser for my breathing. Doctors started talking about lung biopsies. All of a sudden everything changed - I had a bad reaction to the drugs, an abnormal ECG, my troponin levels had risen to 1.57 showing signs of heart damage. I was having a long slow heart attack. In a period of six months I had gone from having the perfect life to being the youngest person by years lying in the Coronary Care unit of Auckland hospital. How could this be happening to me?
When you look back at my history I was a prime candidate. At age 4 I had my tonsils and adenoids removed. As a teenager I developed asthma. In my early 30’s, I was living in Sydney, and working in the food industry. All of a sudden my sense of smell (and taste) disappeared. Apart from making my work difficult, I certainly couldn’t enjoy red wine in quite the same way that I had previously. An operation removed polyps but I could never really smell anything after that.
As new and improved asthma medications and sinus sprays were released onto the market I was prescribed them. I had enjoyed the longest period of stability taking Symbicort.
Once I was in hospital, a Churg Strauss Syndrome diagnosis was made on clinical grounds. An echocardiogram showed pericardial effusion and LV impairment. I responded immediately to high doses of corticosteroids and twelve days later I left the hospital feeling better than I had in a long time, positive about having a diagnosis, but uncertain about how I was going to get through the next weeks and months.
I was in a state of prednisone induced vagueness. I got through that time with a lot of help from family and friends. We cancelled our Christmas travel plans and stayed at home. With both a healthy appetite and a sense of smell which I hadn’t had for years I ate everything that appeared in front of me!
What they don’t tell you about chronic illness is that you will be half well all the time, they don’t say what it means to your relationship with your family and friends when you don’t have the energy, and they don’t tell you the drugs will make your body look and behave in ways completely different to what you’d ever imagined. On one hand I’m so happy to be alive; on the other I don’t know where to put this illness – whether to wear it on my sleeve or whether to ignore it and pretend to get on with my life. I am grieving the life I had anticipated and the body I once owned. I worry about my children. What genetic inheritance will they have? Already, my eldest daughter is highly allergic to nuts and has chronic adenoids.
I am still learning about Churg Strauss, about medications and treatments. How wonderful it is that we live in an age where the internet can give us access to so much information and support.
This is my story 8 months after being diagnosed. What will my story be like in 10 years? 20 years? Beyond? Well, they say that life begins at 40 and so this is really only the beginning.