Friday, May 20, 2011

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!

Thursday, May 5, 2011

Let me off the Roller coaster

Last time I blogged here my platelets were sitting on 380 and things were looking sweet. It seemed the operation had been a great success and I was thrilled to be getting off the Prednisone.

Unfortunately since then things have, once again, got a bit complicated.

We had expected my platelets to drop a bit and settle. Mine, however decided to drop a lot more than "a little".

It has been five weeks since the splenectomy.

On Monday this week as I was getting really for bed I noticed patches of petechiae on my chest. This is red flag for me and I was instantly concerned even while trying to convince myself it was probably nothing. The following morning (3rd May) I went and had a blood test.

That evening my GP rang me and told me my platelets had dropped to 38!!

I told him I'd ring my hematologist the following morning and see what she advised. As luck would have it she rang me early the next day.

I asked her "Are we worried?"
She said, "That depends."

She asked if I'd been unwell with a cold or viral infection. No on all counts. I haven't been sick. She suggested I get another blood test that same day so we would have an indication of what my platelets were doing.

I did as she requested and she rang me again later that afternoon. My platelets had dropped again to 30. A small drop, but a drop none the less.

She suggested that I go in for an outpatient appointment on Friday and have another blood test prior to that appointment.

In the interim I've developed more patches of tiny petechiae and small bruises.

Friday (6th) I went in for my appointment. My platelets had risen very slightly to 36.

So where does that leave us?

It was suggested to me that it might be possible the platelets might stablise around the 30-40 mark, which is not ideal but not uncommon for ITP patients.

I declined the offer to put me back on Prednisone. I have no desire to go back on the steroids if I can avoid it.

I'm to go back for an other blood test and check up next Friday to assess where we're at and if necessary plan any steps going forward.

So now we're in the midst of a waiting game.

Will my platelets hold steady, go up again or plummet?

I hate this uncertainty. Every time I discover new spots or new bruises I can't help but worry that it means my levels are dropping again.

Just when you think the roller coaster ride has come to an end life straps you back in and throws the switch. "Life. Just so you know, I'd like to get off now. Thanks."