Those pesky platelets...UNDER 1k!

Timothy took his trip to Charlotte this week. He was due to come home today, but he called and told me he has many purpura (blood blisters) in his mouth and his pores are seeping blood. Well, that's not a good sign, so I told him to reschedule his flight and called the hemonc in Charlotte (his original doc) and he's there now for IVIg and probably Nplate. Thankfully I just purchased new insurance for him, though its expensive, because I found the hard way that adults with disabilities are pretty much screwed when it comes to medical care if they don't have private insurance. My other son can't get it, but Tim can't be denied because he's 18. In a few months they would be able to deny him insurance based on his med history. Thankfully now he has good (though expensive) insurance and medicaid. My other son is not so lucky. Anyway, Tim was not safe to fly so he's getting emergency treatment-the clinic even paid for a cab to come get him and take him to the hospital. He flies back to KC Thursday...and will likely be in a migraine/fever state by then. Oh, btw, his platelets came back in the machine at 4k, but they had them count them under the scope because they knew it was wrong. He came back "under 1k". I think he's only been that low once before.

Donna,

I haven't come around for a while, but was so sorry to see you and Timothy still on this crazy roller coaster after all these years. I hope you find something to get his platelets up soon!!

Cathy (Mom to Wesley diagnosed 4/2002)

Thanks Cathy,
He had about a year of good counts with NPlate, but we moved and he has a new Hemonc that for some reason doesn't like to give it to him except as a rescue. I think now he believes us though, that he needs a maintenance dose. He's out of the hospital and flying home today, with the IVIg sickness. His doctor has ordered no traveling until he's in remission. We'll see if he abides by this word.

How is Wesley doing?

Oh no! Its like back to the bad old days with Tim's counts. I hope he's got home safe, and that he stays that way.

Ali,
Its only because they don't know how to manage him. They won't give him Nplate if he's 115 or above. His body will destroy that number in hours, let alone the week until they see him next. I've been telling them this since May-they might be ready to believe me now.

Donna,

Wesley is doing great. He's had counts over 100,000 for about 4 years now. The doctor still won't call it Remission, but that's ok. We're just fine with near normal!!

I hope your doctor agrees to put Timothy back on NPlate and you get some relief from the low counts. It's great that it worked so well in the past.

Cathy

That's great! Tim was like that for a while...they called it a partial remission. He held counts of 60-100k for over a year. Oh for those days again!