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."

On the Up and Up

I was back at the hospital on Tuesday for an out patient appointment at the Hematology department. My platelets were at 380, so up very slightly from the previous week.

This is the high end of normal so the hope - and the expectation - is that once I'm off the Prednisone my platelets will drop a bit. Apparently it is not uncommon for them to be high-ish and then drop off somewhat as the Prednisone is tapered off.

What we don't want is for the platelets to continue to rise because then we are looking at the opposite problem thrombocytosis, the risk of blood clots. However, according to Wikipedia platelet counts over 750 are "cause for investigation" and I'm are a good way off this.

Ideally we want to be sitting somewhere in the normal range of 150-300 (though some websites put the top end of normal around 400-450).

The plan is that on Sunday I'll drop the Prednisone to 5mg and the following week take 5mg every other day (unless I begin to feel unwell as a result), ceasing to take it all together the following week. I image it will take a few weeks to get the steroids out of my system all together.

It seems incredible that after six months I'll finally be off the Prednisone and free of it's side effects: the sweats, the hot flushes, my hair falling out, the indigestion, the tingling in my feet, my "buffalo hump" and my "moon face," the facial hair, being tired in the middle of the day and wide awake at bedtime.

As of today I'm cutting down the amount of codeine I'm taking so I've been a bit more uncomfortable today, the nerve has been pinching a bit off and on, but over all it has been tolerable.

The sleeping pills have been working wonders at night, but I've decided to try to cut back on this as well. We'll see how I go. Tonight will be my first night on 1/2 a tablet.

"Stop the world I wanna get off!"

I got a call on my cell while I was meandering along the road to catch the bus into the hospital today. It was the Surgical Outpatients department saying they'd received a referral from my Hematologist and had an appointment for me at 10.30am this Friday. Yes, you heard right. In just two days.

I was a bit surprised since I hadn't actually told them I'd decided to go ahead with it yet, but my hematologist is the proactive sort and is obviously keen to get the ball rolling. Besides if I'd decided to go the other route it would have been easy enough to cancel it.

I dragged a friend along to my appointment since hubby couldn't get the time off work and got in there to discover my doctor was away but that she'd asked someone else to meet with me. Her replacement was lovely and answered all my crazy questions.

My platelets have dropped since Monday (when they were 31) down to 18 yesterday. So, as before, I'm to go for another bloodtest on Monday unless I deteriorate in the meantime, in which case, I'm to go straight into the ward.

Unfortunately, if my history is anything to go by, now that my platelets have slumped this low it's unlikely they'll come up again by themselves. I'll be monitoring myself closely over the next few days for signs that things have deteriorated further. However, because of my bad reaction to the Immugam transfusion last week they're now reluctant to give more unless they have to. As the doctor said, "If we can avoid putting you though that again, we will."

I had my suspicions yesterday that my platelets were dropping again. The site of my bloodtest was still seeping when I went to take the plaster off five hours after the test! And then this morning I noticed a few new tiny red petechiae on my upper right arm and shoulder. So I wasn't really surprised to hear the low result.

Of course if I can't maintain my platelets at the moment on the highest dose of Prednisone they can give me then we have other problems.

A surgeon isn't going to want to operate on someone with a low platelet count. After all, they don't want me to bleed out all on the table... that would be very inconvenient!

Ideally they'd like my platelets to be 80+. It's unlikely they'll do it if I'm sitting under 50. And that feels like miles from where I am now!

So how am I aside from all this? I'm knackered!

I've been very stoic and practical though out the process of making the decision to have the surgery, but the exhaustion is getting to me now and undermining my calm. One of the draw backs of being on a large dose of Prednisone is that no matter how physically, mentally and emotionally exhausted I am my brain won't shut up and let me sleep.

I'm so tired right now all I want to do is curl up in a corner and cry. Let life carry on without me, I don't want to know about it anymore!

It sucks, but that's not the way life works...

I'm trying not to think too hard about the fact that I'm working Friday through Monday. I can't afford to take any time off and we're going to be working short-staffed this weekend anyway. So unless my platelets crash though the floor and I've no choice but to go into hospital, I'm be soldiering on.