Where I’ve Been: Struggling With ITP

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I’ve been meaning to write a post about this but I kept waiting till the struggle was over  and we figured out what’s going on but sadly every time I turn around there’s a new “chapter” in my ITP story.

I’ve had ITP for about four years – it was sort of a random find. I was at the doctors for something completely different and when they drew my blood they discovered my platelets were low and I was referred to a Hematologist. For the past four years my platelets have been low but stable. I only had to have one infusion and that was a precaution before I had my wisdom teeth pulled – otherwise I’ve had no treatment and my platelets have not fallen into the danger zone.

A normal platelet count is 140,000 to 440,000 – mine generally run around 70,000 to 80,000 – low but manageable. When platelets drop below 30,000 treatment is required – when they drop below 10,000 your life is in danger.

When I had my first blood draw this year my platelets were right around 40,000 – pretty low for me but not treatment level. I felt terrible – bruising and petechiae (tiny red dots under the skin meaning a capillary has leaked) but the doctor seemed to think I was hovering around a normal count for me and I’d be fine.

But I wasn’t fine. I had a sinus infection and then a urinary tract infection. I was put on an antibiotic for the UTI – one week later I had a fever and felt awful – I headed into Urgent Care where they told me I had no infection but my platelet count was at 15,000. They gave me steroids and sent me home. I took the steroids for three days until it was quite apparent that I am allergic to that steroid. My body was covered in hives and my palms and feet itched like crazy.

So I had to stop the steroid. Fortunately it had still done some work and brought my platelets into the normal range. But when I had them drawn again two weeks ago  (one week after stopping the steroids) they had dropped to 83,000 – low but not bad. I saw my Hematologist the same day and she said I should keep getting weekly draws till we find out where I plateau. Considering how good I felt all week and the next I figured when I got my blood drawn last Thursday I would be around the same point – 70’s to 80 thousand.

Not so. Fifteen minutes after my blood draw I get a call to see if I’m bleeding. I say that I’m not and that I feel fine. They tell me my platelets are at 18,000! Unfortunately, I haven’t had time yet to see the allergist to do a steroid allergy challenge (we all thought we had plenty of time before my platelets dropped so low again). This meant there was no steroid they could safely give me.

The alternative? A plasma infusion called IVIg:

Intravenous gamma globulin (IVIg) — IVIg is a liquid concentrate of antibodies purified from the plasma (the liquid portion of the blood that doesn’t contain red blood cells) of healthy blood donors. IVIg is believed to work by overwhelming the spleen with antibody so that it cannot recognize the antibody-coated platelets. IVIg treatment will usually result in a rapid (24 to 48 hours) increase in the platelet count, but any improvement is generally short-lived. Treatment may be repeated until the platelet count improves. IVIg is delivered by an intravenous infusion directly into a vein in the arm for several hours a day over a period of 1 to 5 days.

Possible side effects: Some patients treated with IVIg experience nausea and vomiting, headaches or fever and rarely, aseptic meningitis, abnormal blood clots or kidney failure. Many patients are helped by pretreatment with acetaminophen and Benadryl®.

Took 8 hours to administer on Friday and a dose of Benadryl both before and after treatment but I came home okay – not feeling great but okay. Saturday was a completely different story. I went in with a headache and nausea that only got worse throughout the day. The headache being so bad they ordered a CT scan to be sure I wasn’t bleeding into my brain. Thankfully it came back clear.

But even after IV pain meds and IV Zofran I couldn’t shake the headache or the nausea and left the clinic vomiting – oh yeah, that was fun!

After three days in bed I’m still feeling woozy and the headache comes in every time the pain meds wear off. NOT FUN.

The good news? My levels were up to 189,000 today which is in the normal range and means I don’t need to immediately return for more treatment. I am praising God for that. I have a re-draw on Thursday to see how the levels are going – up, down, stable.

Still waiting to see the Allergist. Because of the rapid drop in platelets this will be a more urgent visit than expected and I should get in pretty quick.

Not this week though – this week I’ve already missed saying a decent happy birthday to my dad.

Happy Birthday Dad! You are loved and missed and we all can’t wait to celebrate with you this summer!

And later this week I have the privilege of seeing my girls graduate Kindergarten – no way I’m missing that!

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