Hi Jim:
I agree with Neil that there are too many variables to know exactly how long transfused plts will last for you. I used 89 units of single donor platelets over a course of about 16 months. In the beginning I was not responding well at all to “random” platelets, and my doctor told me I was already refractory. However, by chance I found that there were certain platelets which worked well for me. It happened to be a friend of mine’s platelets. With that cue, I found about 6 other people who worked well for me (they were not HLA matched), and I was able to continue using their platelets until I became independent of transfusions. I no longer bothered with random platelets and only used my directed donors. They were still effective until I no longer needed them. I only used single donor units, which were filtered and irradiated, about 250ccs each unit. They were also filtered at bedside. Might be a good idea for you to pay attention to what kind of filter they use because once the nurse used the wrong size filter and all my platelets got stuck in the filter. I could literally see them in there waving at me. Sure enough my CBC showed I got practically no boost at all. Each unit gave me a boost between 50-70K and lasted me about 7 days. Which brings me to Patti’s MIL’s experience. I’ve heard of other people being able to go every 2 weeks for tranfusions, too, but I wasn’t able to. No matter how big the bag of platelets were, my body just wouldn’t hold on to more than 70 or 80K of transfused platelets. The next day they were always back down to 70 or 80K and continued to drop approx. 10K per day. And for me, the bigger the bag, the greater likelihood of me reacting to them in the form of getting hives and tightness in breathing. So that just shows me there are other variables and differences with each of us.
From the literature I’ve read, platelets normally last about 11-12 days or so. However, to process platelets, my blood bank took about 3 days from collection before the platelets were transfusion ready. My experience showed me that I would drop about 10K plts a day until I was back to needing more platelets. My low was 1K.
As far as symptoms, I had an experience like Jim. When it was all very new to me, I jumped in the shower, and when I got out 15 minutes later, my legs and thighs were literally covered in hundreds of red pinpoint (petechia) marks. As I started to learn to observe my body more, the most telling sign for me that I was getting low was blood blisters in the mouth. If I had any suspicion that my platelets were low, I’d just check in my mouth for blood blisters. That was a pretty good guide for me.
As far as showers, I ended up buying a stool so that I could sit while showering. That seemed to help reduce the pressure from standing that brought out the petechia while in a hotwarm shower. That also helped when my reds were low because showering could also be tiring and something as simple as raising my arms to shampoo my hair was an effort. (Basically when it got close to transfusion time was when that would happen to me).
Another thing I noticed was that my body seemed to adjust to lower platelets after a while. I found that at about 8K and even 5K, I was able to do okay w/o much symptoms. But everyone’s different. I know of people who bleed at much higher level platelets. I think part of that has to do with the quality of their platelets and possibly their other clotting factors.
Hope this helps. Take care!
Marla
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Maybe someone else here will know if that’s true. We’ve been trying to error on the side of caution and pre-med her because she has had reactions to two of them so far and those two did in fact last a shorter period of time. About 5 days instead of 8-10. Nurses keep telling us bag size doesn’t matter but I don’t buy it. When mom gets a 230ml bag they only last 7-8 days. When she gets a 430ml bag she can go 12 days. You’d think she’d go double but she doesn’t. She definately can go longer though. Once mom gets to the point where platelets tx are no longer effective we will move to HLA matched platelets and supposedly that should buy more time (although this also seems to depend on the person because someone else here was getting HLA matched platelets and it didn’t seem to matter). I don’t know if this is much help. I think so much depends on the individuals body.
