Monday, February 14, 2011

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.

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