My Blood Hates Me

The story of Susan

As a child I often had unexplained bruising. I was in hospital briefly as a teen and they mentioned low platelets, but no follow up tests were done. I forgot it until I was in late stage pregnancy, when an intern was checking routine blood tests. No other doctor picked up that my platelet count was well below 50k (normal is 150-400k) and it was only a month before I was due. They diagnosed ITP – Idiopathic Thrombocytopenic Purpura. I was put on steroids to raise the platelets before they induced me early. It made the birth very dangerous, and I was advised to have no more children, or I would likely die.

Over several years they had me on and off steroids for the platelets. This made my weight balloon as a side effect. They’ve since found problems with 2 other problems that stop me losing the weight. Plus sometimes needing the steroids again to keep me alive. Several times I needed blood transfusions, as well as gamma globulin infusions, which are a liquid like thick honey being forced into your veins through a machine.

Several years later I got a DVT in my leg. I was taken off the pill and medication stopped shortly after. 18 months later I have an MPE – Multiple Pulmonary Emboli. Blood clots in one lung. Most of that lung collapsed. A pain I cannot even describe. It was worse than childbirth. It took local doctors 2 days to diagnose. Due to ‘not wanting to be a bother’ I didn’t go to hospital until ordered to once the MRI results came back. 

That time they had a haemotologist look at me. My platelets were almost ok, but they wanted to know why the blood clots had started. They did a blood test to determine I have Antiphospholipid Syndrome. It’s an autoimmune disorder where the body attacks the blood cells, making them ‘sticky’ and more likely to clump together and form a clot. So I’m on Warfarin for life. It’s what they use in rat poison. I have to be tested for blood levels every couple of weeks. That was 16yrs ago and I’m still going. 

A couple years ago everything went out of whack at once. My platelets shot down and my warfarin level shot up. I fell on a road, and the knee I fell on was very badly bruised [Image]. My blood didn’t clot, so falling on the one knee, I ended up bruised brom my ankle to top of the thigh. One hospital basically shrugged and said they couldn’t do anything. The next day I went to a much better hospital, the Mater in Brisbane, Australia, who I am still seeing specialists with. I had several other problems medically affected by the bleeding problem which needed an Ob/Gyn to assist as well. I also found out the name of my disorder and that, oh yes it often causes Thrombocytopenia as well. It’s no longer Idiopathic because that means they don’t know the cause.

So for the haematology specialist I test every couple months for both platelets and warfarin. I have to be careful of certain foods, certain vitamins, never take asprin, and be aware of any new bruises. It also causes brain fog, short term memory loss, pain, balance problems, and blood flow to extremeties.

I have several other auto immune disorders, which make things worse. It’s hard knowing your body is it’s own worst enemy. However if I didn’t live in this time and place, I would have died without the medications that have only relatively recently been discovered.

My life is owed to not only medical research, but very much to blood donors as well. Thank you.