The transfusion had barely started when I started having a reaction. I'd been premedicated with 25mg IV Benadryl and 2 Tylenols, but it didn't make any difference. They stopped the drip while they called the doc, who ordered an IV dose of solumedrol. Then they started the platelets back at a very slow drip. It was either these platelets or none as there were no extras at the blood bank. The reaction continued and I got another IV dose of 25mg Benadryl. As you might imagine, all this totally knocked me out! I slept through the rest of the afternoon, which included getting the two units of red cells and lasted about 5 hours. And it wasn't until after I got home that the rash all went away.
As I was dropping off to sleep I heard the charge nurse having words with the blood bank. Not only did they send AB platelets for me, they didn't bother to check the HLA matching that I'm also supposed to have. PLUS, they sent O platelets to three other people who don't have problems. I think from now on I will be getting O platelets that are HLA matched. Keeping my fingers crossed anyway. Because I know I have several more weeks if not months of needing to get platelet transfusions.
Because I have had so many red cell transfusions, I have an excessive build-up of iron. Long term, this is not a good thing. There are drugs you can take to remove the iron and it takes some effort to get them. The one which was prescribed to me - Exjade - is only sold by three pharmacies in the country. I was actually set up to start taking it just before I went in the hospital, but that delayed things.
So tonight I took my first dose. The tablets have to be dissolved in water (or apple or orange juice) and drunk on an empty stomach. Then I have to wait at least 30 minutes before eating anything. The tablets are flat and white, kinda like small Alka Seltzer tablets. But they don't really fizz. I had to break them up and stir well with a spoon. The water looked like milk and there wasn't any flavour. So far, so good.
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4 comments:
Hang in there girl. We're all rooting for you.
Thanks so much. I was getting a little discouraged at being so tired all the time, but now I'm getting a little strength back. Amazing how good a few minutes in the kitchen can make me feel.
It's bad enough being ill but when they make needless errors it can be so frustrating. I hope you get O in the future. Keeping you in my prayers and thoughts.
Thank you so much. Likely will need a platelet transfusion today, so I'll find out if they are back on track. I appreciate the good thoughts and prayers.
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