Feeling pretty giddy today. I havent posted much recently on my health issues with the TTP. On June 6th (a Friday) my levels were good and I had been without an aphereis treatment for two weeks. I felt so good that weekend, even had a bunch of energy without getting tired and short of breath, but when I went back on Monday for my usual 3x week blood work, my LDH was shooting up and my platelets were plummeting, so they put me back on aphereis every Monday, Wednesday and Friday. With getting my blood work first waiting, being sent to the apheresis unit, more waiting, getting my treatment, etc. I was at Albany Med for about 6 hours, so my weeks were pretty much shot. Now, to this week. Had my treatment on Monday, Wednesday I wasnt feeling all that great because part of the symptoms I have from being anemic and my system being so messed up, I have a fairly persistent cough (especially when I exert myself) and Ive been having some intestinal issues, so I was getting worn out. I asked them that unless my levels were really bad, could I skip my treatment? My levels were okay, so it was a go. Went back today and, even though my LDH went from 166 to 188 (normal range is 140-271 and they dont like you going over 200,) they felt my levels were such that I did not need a treatment today. And.....my red blood count is higher than its ever been since I first got ill at 3.48 (normal is 4.2-5.4,) which shows you that Im still anemic and thats going to take awhile. BUT....the biggest news is that my Adamts13 test results were back. When I first was admitted to the hospital, my Adamts13 was an 8 and was positive for the enzyme that fights against the antibody that keeps my platelets and red blood cells from working in harmony :( Thats why my platelets were all the way down to only 5,000 (normal is 120,000 - 400,000.) My result was a 54 and no sign of that enzyme that was beating me up. They did do another test today to send out to make sure. It takes awhile to get the results back, but Im SO psyched! They are now scheduling me for only 2 x a week for blood work (and treatment if needed...if not...go home!) Four weeks from now, well see how Im doing and if all looks good, theyll schedule me for getting my catheter removed from my chest. Another great thing is....I can play golf as much as I want (as long as I take care of myself.) That means riding around in a cart for 27 holes instead of pushing a cart. Oh, darn.... Woohoo!!!!!
Posted on: Fri, 11 Jul 2014 17:14:46 +0000
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