Where we're at now

Since I posted last my platelets have continued to increase. My visits to the hematologists have gone from weekly visits to monthly ones. With no drug treatment for the last three months my results have been in the 300s, which has been more than amazing!

So it seems (for now at least) that the splenectomy has truly worked.

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!

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.

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!

Post Op

On Friday the 25th I had an appointment with my hematologist. She was pleased with the fact that my platelets were at 226. She told me to stop taking my garlic and fish oil supplements as these thin the blood.

My folks finally arrived on Sunday afternoon after an extended stay with my brother on their way south. I had to go into the hospital that evening for a blood sample to be taken (in case they had to give me a blood transfusion) and I was also to have an injection to thin my blood.

When we got in to DPH they told us they were no longer going to give me the injection. We couldn't help feeling a little peeved. We'd driven all the way into town and they were only going to take a blood sample which they easily could've taken the following morning.

My hubby dropped me off at the hospital just before 7am and I headed up to the 4th floor trailing my little purple suitcase. I was given a lovely set of hospital pjs, a stylish gown and boxers. "One size fits nobody," the nurse joked as she handed them over.

I was first on the list for surgery. As I'd requested I was given a little pill to help me relax. At 7.30 was taken down to theater and asked to climb on to the operating table. My memory at this point is a little hazy, no doubt the de-stressing drug was beginning to take effect. They gave me a mask to breath into....

.... and the next thing I knew someone was saying, "You have to wake up. You're in the recovery ward. The op has been done, it went well and you need to wake up."

The next thing I was aware of was pain.

I admit I moaned and grizzled a fair bit after this.

I think they gave me a few oral pain killers. Then I remember someone saying it wasn't enough and they were going to have to give me something else. Another someone started giving orders. A pain pump was pressed into my hand and I was told to pump it as much as I needed to. The pain eased quickly after that and I think I went back to sleep.

My next memory was waking up on the ward with my Mum sitting beside me. Apparently I'd been awake before this and had a conversation with her and my Dad when I'd first been taken to the ward, but I don't remember any of it or that my Dad had even been there.

The pain pump was brilliant! It was my very good friend for the next 24 hours.

I was very unsteady on my feet, and pretty spaced out for much of the first day. I remember being fairly proud of how coherent and with-it I was, but apparently reality was a little different...

The next morning (Tuesday 29th) the surgeon and his team came round first thing to check on me. This was the first time I'd seen what they'd done to me. I think I was a bit scared to look before that. I had four wounds/incisions. Two small ones just below the line of my lower left ribs, one more towards the center of my tum and another larger one on my side.

Because my platelets had been so high there had been no need for me to have any infusions of platelets. The surgery had gone well with no complications, he was pleased with how it all looked and thought I could probably go home the next day if I was strong enough.

My platelets were are at 230.

My Prednisone had been given intravenously during the op and increased to 30mg (up from 15mg) to cover any post-operative stress my body might experience. I was then given 30mg orally on Tuesday and it was dropped to 25mg on Wednesday. The plan was to decrease the Prednisone by 5mg every two days until I hit 15mg.

I'd also been given my first dose of antibiotics intravenously, but now I started taking them orally. Pencillin VK 500mg twice a day for the rest of my life.

The pain pump was taken off me at about 10am and I was given oral pain relief; panadol, codeine and tramadol. I'm not allowed to take ibuprofen or asprin because they thin the blood.

I was encouraged to eat, though I really didn't feel like it. Mum came in with Dad in the morning and spent the day with me, chatting, drinking coffee and generally just hanging out. Dad went off to potter and do a few odd jobs he'd managed to find that needed doing.

Mum helped me shower in the morning (the nurses were so busy there was no way they could have found time to assist me) and read a book while I snoozed in the afternoon. My Dad brought the kids in to visit for a short while after school and my hubby dropped in again after work. A couple of friends also popped in.

I slowly began to regain my strength and by the end of the day I could hobble to the bathroom and back to my bed without assistance as long as I had something to hold on to.

On Wednesday morning my platelets had dropped a little to 219. I was given the all clear and told I could go home. My wounds were cleaned and dressed and by the time the house surgeon had got all the paperwork together it was after lunch. I was wheeled down to the entrance and left the hospital at about 1.30pm.

A Bit of Good News

As I suspected, once my platelets had broken through the 200 barrier they'd start to drop again.

On Monday 7th my platelets were at a very comfortable 188, by Friday when I had my pre-op they'll cruised to an all time high of 223, but on Monday 14th they'd fallen back to 196.

Still 196 is nothing to sneeze at. It's nicely above 150, which is the minimum my Hematologist wants me to be sitting on when surgery rolls around in a just over a week and a half.

After getting the result from the nurse this morning my Hematologist rang me and confirmed that I was allowed to decrease the Prednisone again by 10mg. So tomorrow I'll be down to 20mg.

Already, as I've been decreasing the dosage, the side effects are easing. I still have a lot of neck and facial swelling, but the pain in my neck and shoulders has eased and Panadol is usually enough to deal with it. The tingling in my hands and feet and the numbness in my face have gone. The indigestion has eased so much I very rarely need to take Mylanta, the Omeprazole twice a day is usually enough now.

So I'm excited and celebrating this small victory.

Now if they will just hold steady and if I can avoid getting sick for the next week and a half I'll be a happy camper.