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.

Back Home

During my first few days at home I needed help to do the most basic things, like getting into bed and putting on my shoes, and I spent most of my time sitting in our little down stairs lounge while my Mum ran around after me.

It wasn't until Friday evening that I let Glenn help me up the stairs to join my family for tea for the first time since the operation.

On Friday I went to the medical clinic and had my incisions dressings and my dressings changed. One of them had been looking a little dodgy but apparently the wound itself looked fine upon inspection. So that was good news.

The next morning (Saturday) I was quite unwell. I felt really spaced out. I was really nauseous and sweating. I felt (and looked) awful. We all began to worry that I was coming down with an infection of some kind.

Luckily I had been discharged from hospital with a few anti-nausea tablets (among other things). I took one and within an hour I started to feel much better, the fever symptoms passed and I was fine. I still have no idea what set off that episode but am very relieved that it all came to nothing.

By now I was beginning to suspect that they might have damaged a nerve near my hip when then made or repaired the largest of the incissions, the one on my side. I have a numb area above my left hip, which sometimes stings or pinches and at times, especially at night, burns. It's can be incredibly painful and at other times its little more than a twinge.

On Monday I went for my weekly blood test and on Tuesday I went back to the medical centre to see my GP. My platelet result was 375!!!!

This would seem to indicate that the operation was successful. Even though I was still on 15mg of Prednisone this is an off the chart count for me and high into the "normal" zone.

My GP will be overseeing weaning me off the Prednisone. So the plan is now to stay on 15mg for a week and then drop to 10mg and so on until I hit 5mg.

It'll be interesting to see where my platelets are sitting on Monday and where they will finally settle once all the steroids are out of my system.

I also discussed the nerve pain problem I was having and my GP suggested a medication I might try. More commonly used as an anti-depressant, it's also used to treat nerve pain. She said there are a number of different drugs we could use if the first one didn't work for me. She also advised that I wasn't to take this and my sleeping pill at the same time, rather I should take one or the other as this drug should dope me up enough to help me to sleep anyway.

As it turns out we may need to try something different. The first night it seemed to work. The burning sensation, which is often at its worst at night, eased but I had the weirdest dreams and it wasn't until I took my painkillers at 3am that I actually slept properly. I tried it again the next night but again had strange dreams, slept very poorly and it seemed to have very little impact on the nerve pain this time.

On Thursday night I decided to go back to using my sleeping tablet to see if it worked any better. The result? I slept like a baby. I didn't wake until morning and didn't need need to take any painkiller in the middle of the night.

Perhaps I should have given the drug more than a two day trial, but the odd dreams were just disturbing. Shrug. I'll check in with my GP again on Tuesday to see what she advises, in the mean time I think I'll go back to using my sleeping tablets.

I also needed my GP to refer me for a medic alert bracelet. This will have my personal medical alert number and "post-splenectomy," engraved on the back so should I become ill medical/ambulance staff will know straight away what infections I am most at risk from. I still need to check back with my GP as to whether or not I need to have "ITP" detailed on the back as well.

I'll send my application off to medic alert next week. I'm looking forward to wearing my new bling!