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‘Sue’s Story’

A little bit about you – I am 53 years old and have lived in Melbourne, Australia all my life. I work in the accounts department of a Law firm and have done so for the past ten years.  My passions in life are photography, gardening, travel and writing poetry and I have been doing a lot of the latter since being diagnosed with ITP.  I have been married to Andrew for 27 years and we have a 23 year old daughter named Elysa.  When I was 8 years old I fell off a slide and had my spleen removed.

How were you diagnosed –

On the morning of the 2nd of February this year I awoke feeling unwell and when I got out of the shower I noticed a strange, large oval shaped bruise on my right forearm.  I had never seen anything like this before.  It was raised and very tender to touch.  I also discovered a large black blister on the side of my tongue which was very confronting as I’d never seen anything like this before either.  Over the past week or so I had also noticed tiny pin pricks of blood beneath my eyebrows and a few on my cheeks but didn’t really give them a second thought.  My mind started racing and I immediately thought it was something to do with my immune system and the fact that I didn’t have a spleen.  I didn’t know whether to wake my husband or what to do but felt an urgent need to get to the doctor so made a morning appointment.  I told my doctor about the turn of events that morning and said I’d been feeling tired over Christmas but put it down to the hot weather and being such a busy time of year.  Also, last year had been extremely stressful as my mother was battling anxiety and depression and was about to move into a retirement home, as well as selling the family home.

My doctor looked at the bruise on my arm and the blister on my tongue and said she thought it might be something to do with my platelets and ordered me to get some urgent blood tests.  I went back to work and at 2:20 pm received a phone call that terrified me.  It was my doctor ringing me and telling me to get to the Alfred Hospital immediately as my platelet count was down to 5,000.  I handed the phone to my workmate as I was not comprehending all the doctor was saying and before I knew it my husband was driving me to the Alfred.  Before too long I was admitted and monitored until I saw a doctor who told me they were in the process of sourcing some special blood (yellow) in order to give me an IVIg transfusion.  In the meantime they explained that they would give me some steroid tablets.  At 8:00 pm I was given my first dose of Prednisolone (80mgs) and at 11:00 pm they started the IVIg transfusion which finished at about 7:30 am so needless to say I hardly slept that night.

I was told the next day my condition was called ITP and I spent the next three days in hospital and since the week after I have been having regular blood tests and visits to the Haematologist at the Alfred.  My last platelet count on 7th March was at 488,000 which was a huge improvement.  I have slowly been weaned off the Prednisolone over the past weeks and on Wednesday 30th March I stopped taking it altogether.

Well, the side effects were horrendous with the worst initially being insomnia, fatigue, feeling hyper then depressed very quickly, twitching in my muscles, weakness in my legs etc.  Other symptoms would come and go but in the past week the depression is much worse, as is the weakness in my legs and the fatigue.  The feeling of being hyper, I have not felt for a couple of weeks now, I guess due to the reduction in the medication.  Strangely I’ve been feeling worse since being on a lower dose.  I am feeling very apprehensive about what side effects I might have now I am completely off the medication but try not to think about it.  I go back to the hospital for an update on condition on Monday 4th April and see where I go from there.

How were you feeling before you was diagnosed?

My illness took me by surprise, although when I look back it could have a lot to do with my concern and worry for my mother.  I hadn’t been sick other than feeling very tired over the Christmas period but put this down to the hot weather and being such a busy time of year.  I also had a sore on my leg that just wasn’t healing but it turned out that was nothing to do with my illness. 

When your platelets drop…

I’m a bit concerned about a relapse and wonder whether I’ll have some idea beforehand that something is wrong next time?

Stress is…

After my diagnosis my Osteopath suggested that the cause may have been due to stress re my Mum and I tend to agree with him.  To combat stress in my life I get out in my garden or down to the beach and take sunset photos.

Heat – As I currently at the menopause stage I find it difficult to know whether my hot flushes are from menopause or ITP.  Before my diagnosis I would suffer hot flushes at random during the day but mostly at night while asleep.

Sleep – Up until my diagnosis I was a pretty good sleeper but in the first few weeks I was averaging about 3 – 4 hours sleep and I was up at around 4:30 – 5:00 am as I couldn’t sleep and this lack of sleep eventually caught up with me.  As I lowered my dose of Prednisolone my sleeping has improved although I wake up at least 2 – 3 times a night but manage to go back to sleep.  I have always been a morning person and generally wake up around 6 am every morning and am usually in bed by 10 pm reading for ½ an hour or so before turning off the light.  I generally cope okay with 6 – 7 hours sleep.

Exercise – I generally do pilates once a week for an hour and my husband and I do ½ an hour with a personal trainer every Saturday morning but since being diagnosed I feel so exhausted every day that I have no interest in exercise.  I just don’t think I’d be able to do it as my energy levels are so low, particularly by the end of the day.

Appetite – My appetite is still okay but in the past week I have felt nauseous some days so don’t feel so hungry. 

Moods – I seem to get upset very easily and when I was on the higher dose I’d get angry which was very unlike me.  As the depression got worse I cry very easily and feel very flat at some stage on most days.  Sometimes I feel down the whole day and just can’t seem to lift myself out of it.  I manage to hide how I really feel from others.

How has my life changed since my diagnosis? – My main fear is what does my diagnosis mean re my life expectancy.  It terrifies me but I can’t stop thinking about it.  I want to continue to pursue my love of travel and we have a sponsor child in Bali who we will visit next year.  I just made an appointment with my GP to ask her some questions re my concerns but she may not have the answers I seek?

Worst / funniest injury – I’ve had a very colorful life re injuries/operations etc.  In 1971 I had my spleen removed, I’ve had two shoulder operations in the space of two years (on different shoulders) and I suffered a spontaneous pneumothorax (collapsed lung) which I only recently discovered was due to a Myotherapist putting the needle (re dry needling procedure) in the wrong place, hence  causing the lung to collapse.  Now I have ITP to add to my impressive list – never a dull moment with me!!

Dealing with ‘being sick’ – At the moment there are still many unanswered questions re my illness and up until I discovered ITPandMe I struggled to find much information at all about ITP, as I’m sure many of you can relate.  It surprised me that the people who have cared the most are those I hardly know.  Some people still have not contacted me to see how I’m going and that has disappointed me greatly.

I also write poetry when I am extremely emotional about something.  This is one I wrote about my recent illness :


I hide behind a mask

Of fear and uncertainty

As my illness takes control

It’s almost got the best of me

I make out that I’m okay

But you probably wouldn’t know

If you scratch beneath the surface

You’ll see I’ve lost my golden glow

I look okay on the outside

But there is much you cannot see

The medication is horrendous

And I’m not the same old me

There are visits to the hospital

And blood tests every week

My life has changed so much

But it’s normality I seek

My body feels so weak

Even though my mind stays strong

I wish I had a crystal ball

I just wish I knew how long?

Sue Tancheff

18th February 2016

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

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