Monday, June 17, 2013

Wake up call 

Every once in a while I need a reminder that my ITP is a chronic auto-immune disease, and that just because I feel well and full of energy and a functioning brain, I am not over it. I am not cured, because it’s an auto-immune problem for which no-one knows the cause. Since we don’t know the cause, we can’t eliminate it, and it’s probably exacerbated or mediated by various genetic and nutritional deficiencies I’ve had since birth. And so the problem of low platelet numbers will recur time and time again. I received a wake up call last week when my latest blood test showed an alarming figure of 17, three below the safety level my doctor and I had set for going to hospital. To be honest, the levels had been dropping over the previous three months, by about 50 percent each six week test, but we’d quietly ignored the decrease as my numbers were still high, and I was doing well on all the other counts – haemoglobin, cortisol, adrenals, liver function, kidneys, everything except my IGGs, which were still a bit behind.

At the end of April I had a flu shot, as winter was approaching with the flu season. Two weeks later I flew to the US (21+ hour flights each way) and had three wonderful weeks with my daughter and her husband in Boston, and three and a half fabulous days in New York. I paced myself, resting on every second or third day, and every day for a couple of hours in NYC, but other than that had a fantastic time, travelling, eating well, drinking cocktails, meeting new people, visiting museums, theatres and art galleries, and exercising once a week in their home gym.

When I came home to Sydney, I was tired but still high on pleasure, and apart from normal tiredness – no jetlag – felt fine. In fact I felt better than fine. I felt fabulous! A week later I had my blood test, and a phone call the next day from my doctor, concerned about the dreadful figure for my platelets. When I saw her, I assured I was feeling fine, that I had no spontaneous bruising (plenty of bruises from travelling, but I knew the origin of each bump and knock), and that my gums were only bleeding a little when I cleaned my teeth. We had a serious discussion about risk management, and agreed that I would go straight to A&E if I had any fall, trauma or was knocked down in the street. As before, the risk is invisible but serious – internal bleeding, especially into the brain if I had a head injury.

Since winter had already started, and although we were enjoying milder temperatures than usual, early mornings were foggy and rainy, so I agreed to stop going to the gym for the next few weeks. Early morning is the best time of day for me to go to the gym, so I’ll just have to exercise at home for a while. No sense risking getting knocked down getting on or off a bus!

A week later and I’m rejoicing that I have a head cold. Violent, explosive sneezing, runny nose, slight temperature, mild sore throat. Nothing major, just a common or garden cold, an URTI, but it’s something to keep my immune system busy, so it leaves my platelets alone. No-one enjoys a cold, but I’m actually delighted this one has started. Next week’s blood test could show a nice increase in my platelets What the statistics from my three and half years of blood-tests show is that I need at least two episodes of illness – flu, stomach bug, heavy cold, migraines that leave me dehydrated from nausea – to give my platelets a chance to recover and bounce back to normal.

So here’s hoping that this week’s cold will do the trick. I don’t want anything worse. I had a bad stomach bug in late November that was absolutely horrible – vomiting, diarrhoea, shakiness for days – that messed up my plans for Christmas. But did bounce my platelets up to 146. If this cold works, I should have three to five months of good numbers before I need another infection. Bring it on! Meanwhile, pass me the tissues, I feel a sneeze coming…

Reasons to be cheerful

Apart from the happy memories, photos and new clothes from my holiday, the fact that I mostly feel well and have patchy but fairly regular freelance work I can do at home are very good reasons to be cheerful.  Living in a beautiful city with lots of cultural activities I enjoy with friends is a bonus!


  1. I'm so happy you got to go to Boston and NY! What an adventure! One day, I swear, I'll make it to your city to see you. I've always wanted to see Australia.

    I do know what you mean, though. Yesterday my back went out - for no apparent reason. I was in horrible pain all night and it's a bit better today, but I'll be only doing upper body exercises, that's for sure. I can't figure out what happened, but with the lupus, it could actually be NOTHING -- just the disease trying to destroy me.

    We're a pair, aren't we? I bet when I get back from my son's wedding in September, I'll be down for the count for at least a week.

  2. Very nice post, impressive. its quite different from other posts. Thanks for sharing.

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    1. Thanks for commenting. I'm glad you found it interesting. And thanks for nudging me to look at this post. Because here I am, 2 years later, in much the same position. Winter, but feeling really well, and looking forward to having a long-awaited cataract operation on my left eye. Then I get a cold, & have to postpone the op. Not a bad cold, unfortunately, because next thing I know, I'm getting bruises. Uh-oh. They're down way low - 14 - and my haematologist and the eye surgeon postpone the op again, for 6 weeks. I have to get my platelets back over 100. So I'm back on relatively high doses of prednisone - 25mg/day, and a Chinese herb called Qin Ying Tang. Just a reminder, in case I had forgotten, that I'm in this for life.

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