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.

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."

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.

What Happened Next

9th February: So back to hospital I went. I packed a small overnight bag on a hunch I'd end up being in overnight.

All three of my hematologists, including my Consultant and Registrar, were waiting for me in ED when I arrived and I was out of the waiting room, processed and into a ward within 20 minutes (which has got to be some kind of medical miracle, they were certainly pleased with themselves).

They did the usual processing in ED, examined my bruises and spots and questioned me about any illness or medication or health products that might have triggered the crash in my platelet levels.

The thing was, other than feeling tired much of the time I'd been fine. Which had them scratching their heads and frowning. I'd had nasty UTI in the middle of January but it was deemed to have been too long ago for the antibiotics to have caused the crash.

And that's when all the apples fell off the cart and my hematologist said, "I think we may have to consider surgery. Otherwise you would have to be on least 10-12mgs of Prednisone dosage, and that's too high."
Surgery was something that had been mentioned when I was first diagnosed. I nodded and asked, "So how long will we wait before we have to think about it seriously." Thinking that if I didn't improve in a few months we'd give it due consideration.
She said, "I think we could get you in in the next two or three weeks."
I stared at her. I'm sure my eyes bulged and my mouth dropped open in shock because she added, "There is a drug you could take instead but it carries a cancer risk and you're too young to take that risk." Seeing it was all a bit overwhelming for me, she gave me a hug. (I have lovely doctors!)

They soon had me up in the ward and hooked up to an IV line. I was given a large dose of Immunogobulin Intragram (antibodies) to quick jump me out of the critical zone and get my platelets back up above 10. It takes about three + hours to take on board the full dose.

Each time I've had an infusion I've had different side effects. The first time it gave me mild joint and muscle aches and an annoying dry cough that lasted for weeks afterwards. The second time I had almost no reaction - possibly because it was within days of the first dose - I just felt a little queasy. This time, I was fine (aside from the annoying cough) until the last hour when I started to feel queasy. By this time it was almost midnight, they were almost done and I was too tired to complain.

By the time they unhooked me I was feeling quite nauseous and headachy and was given some anti-nausea drugs. I tried to sleep.

I semi-woke later shuddering and shaking but too exhausted to even roll over and press the bell for the nurse.

Later when the nurse came in to do my observations I woke enough to ask for another blanket and tell him I was feeling cold and confess my quaking. The nurse promptly whipped out a thermometer.

I had a fever. He took my blankets away, turned on a fan and plastered a cold cloth to my forehead. I was too miserable to argue. My head was sore, the light hurt my eyes, my joints ached and I felt stiff everywhere. I had many of the flu-like symptoms of meningitis.

A doctor was brought in to check on me and they decided to cover their bases and give me IV antibiotics in case (though it was highly unlikely) I had an infection on the brain.

By the time my doctors came by about 8.30am the next morning I could tolerate the light and the headache and most of the stiffness was gone. After a bit of discussion with me and amongst themselves it was determined that I'd experienced meningism like symptoms as a delayed reaction to the Intragram. I'm still, almost a week later, troubled at times with aching joints (and the cough) but otherwise the symptoms have fully resolved.

My bloods showed the Intragram infusion had worked and my platelets were back up to 25. Because I "was a sensible person and tuned into my body" they were happy to discharge me.

I would have to go home and discuss with my hubby the next step in my treatment.
I would have to make a difficult choice.
The choice between surgery to remove my spleen or the drug Azathioprine.

I was given information about the drug and about post splenectomy considerations to help me make up my mind. We considered this information, studied abstracts from studies of ITP patients who have been treated by both splenectomy and Azathioprine, and read pages and pages of info on the internet about the risks and success rates of both these treatments. I talked to people who had taken this drug (though for different conditions to my own). We prayed.

On Sunday night we gave voice to the decision we'd made. I would have the splenectomy.

On Monday I updated my boss and discussed the time I'd have to have off work as a result, then trotted off to have another blood test. My platelets had increased to 31.

I had another test today and will find out the result tomorrow when I go into hospital to discuss our decision and find out what happens next.