Celebrate the Little Things

When my platelets dropped off again rather sharply after the op, it left me concerned as to what options I had left. I began to wonder about what kind of therapies they might suggest to me next and if I had many options at all.

I became active in the two Facebook ITP groups which are a wonderful support for people trying to make sense of - and live with - ITP. There people were discussing the different therapies and their experiences with them.

One lady shared a story about one of her family members who had a count of zero and didn't respond to any treatments. She eventually died. Stories like this are scary to hear about, but eye opening too.

The problem with ITP is that each person afflicted by it will present the disease in a slightly different way. Some will suffer from a lot of bleeding, bruising and intense fatigue where others will have the petechiae and fatigue, or no symptoms at all.

In the same way each person responds to the treatments in a different way. One person may have great success with a treatment, yet it may do nothing at all for someone else. One person may experience no side effects to a drug that others react very strongly too. So in many cases our Drs simply have to try different things and hope they'll find a perfect match between patient and treatment, and hope the results will last. This can be challenging and disheartening for patients and their hematologists.

The frustration I have is that in New Zealand (as in Canada) we don't have full access to all the therapies that are available to UK and American patients of ITP. For instance the two options I was presented with were surgery or Azathioprine - and I was cautioned against the drug.

If I was in the UK or America they would likely give me a range of drugs to trial and, in many cases, surgery would be one of the final options.

Most of the time having ITP is little more than an inconvenience, a specter that hovers in the back of your mind. When things are going well it can be easy to forget that you're unwell and that ITP is a dangerous condition to have.

On a lighter note, things at my end have continued to improve.

I recovering from the virus I fell prey to a couple of weeks ago and the double dose of penicillin seems to have prevented my catching any secondary bacterial chest infections.

Two weeks ago I was sitting on platelets of 36. That rose the following week to 66 which was a great relief. Imagine my delight today when I found out I'm now sitting on 184!!!

I couldn't believe it. I'm so stoked!

I said to the hematologist, "So it looks like the operation has worked after all."
He gave me a funny look. "Well, things are looking all right, for now. They did drop very low though. It may not last long," he said in a voice that implied he wouldn't be surprised if the crashed again in the near future.
I said, "Yes, but I was told they'd probably drop off after the surgery and then go up again."
He just looked at me. "Not that low."

Still, I refuse to let his pessimistic prediction get the better of me. I won't let myself worry about what will happen if/when I crash again.

I'm determined to celebrate this and think of it as a victory. Long may it last!

Symtoms of ITP

The symptoms of ITP tend to vary in intensity between those effected by it.

I tend to have a fairly mild response to a low level of platelets, compared with some of the nasty images I've seen on google.

According to the US NIH;

Having a low platelet count doesn’t cause symptoms. However, the bleeding that a low platelet count can cause may have the following signs and symptoms:

• Pinpoint red spots on the skin that often are found in groups and may look like a rash. The spots, called petechiae, are due to bleeding under the skin.
• Bruising or purplish areas on the skin or mucous membranes (such as in the mouth) due to bleeding under the skin. The bruises may occur for no known reason. This type of bruising is called purpura. More extensive bleeding can cause hematomas. A hematoma is a collection of clotted or partially clotted blood under the skin. It looks or feels like a lump.
• Nosebleeds or bleeding from the gums (for example, when dental work is done).
• Blood in the urine or stool (bowel movement).

Any kind of bleeding that's hard to stop could be a sign of ITP. This includes menstrual bleeding in women that’s heavier than usual.

Bleeding in the brain is rare, and the symptoms of bleeding in the brain may vary in severity.

Exhaustion
Some places on the internet deny that ITP should cause you to feel tired and leave you battling with exhaustion (maybe this is true if your platelet levels are above the critical zone) but my Drs are never surprised I'm exhausted. This is one of the first things I notice and the one symptom I find the most difficult to deal with especially when it leads to lethargy and the sensation of limb weakness.

Headaches
I sometimes get sharp, short lived headaches, this is probably due more to the weariness factor than ITP itself.

Mild Paraesthesiae
A tingling or burning sensation in the skin like pins and needles.

I have increasingly been getting this, especially when I'm in bed. It's not as uncomfortable or as intense as pins and needles but more like a random tingling in the toes/foot and fingers. Lately I've also been getting a sensation in parts of my hands that I can only describe as a burning, stinging feeling, as if I'd recently scolded or burnt it.

This may be a reaction to the steroid treatment rather than a symptom of ITP.

Petechiae (Blood Spots)
Flat roundish red spots under the skin which are caused by blood leaking from the capillaries in to the the skin. These can be anywhere on the body including inside the mouth.

I tend to get them most commonly on my chest, arms and legs, especially around my ankles. They can be quite scattered or in clumped in 'crops'.

Purpura
Are larger, darker spots or areas of bleeding that become purple or brown bruises caused by bleeding under the skin.

Bruising
I get a lot of bruises when my platelets are low and I couldn't tell you where I'd get most of them from. They're ususally the yellow or brown variety but occasionally I get a lovely purple one. The legs seem to be most vulnerable for this.

Bleeding
[note: If you have ITP and you hit your head go to your GP or ED as it may cause bleeding on the brain.]
Some people maybe have blood in their stools or urine or related spotting. Women may have much heavier periods. You maybe susceptible to nosebleeds and bleeding gums when brushing your teeth. Blood filled blisters may appear in the mouth and on lips. If cut, bleeding will be much, much slower to stop. "In general the more bleeding symptoms you have, the lower your platelet count" according to the PDSA.

When my platelets are low I get bleeding gums on doing my teeth and they are sometimes quite raw. I don't tend to get nose bleeds, though I sometimes have small blood clots on blowing my nose (what they call mild epistaxis) and spotting. This was the case even when my platelet count was 2!! unless I'm cut or punctured I don't tend to bleed.


I hope this gives you an idea of what to look for if you think you, or someone else you know, has ITP. Remember some people will have a much milder set of symptoms than others.