I have a doctor’s appointment tomorrow with a hematologist. I went to see him for the first time a few months ago, three years after I was diagnosed with CTEPH and massive PEs. When my best friend had PEs even less severe than mine, they had a hematologist come visit her in the hospital. I never saw one. I had another round of blood clots and PEs, severe enough to spend another week in the hospital after the first round, and they put an IVC filter in, without consulting a hematologist. Then I had two more rounds of PEs that I documented, and a couple more that I know because of how it felt that they were PEs, but I didn’t go in and get them documented.

All of this while on therapeutic levels of coumadin (warfarin). They tried to blame me, the doctors did, by saying my PT/INR was off, but I had a home machine. I took mine weekly, which was more than most people do. My PT/INR was always high–in fact, it was always high enough that they sometimes said I was a bleeding risk. So high that one time I was bleeding so badly internally that I was hospitalized for it and put on fluids and IV bags of potassium and magnesium and a week later, a bag of blood.

Warfarin failure, I discovered it was called.

How did I discover there was such a thing as warfarin failure? By reading Google search result links. Apparently, though it is rare, there are some people who report therapeutic on coumadin/warfarin, but they do not have a stop in clotting from it. And I seemed, after repeated breakthrough clots, to be one of those people. Then we ask the doctor at that point if it’s possible the warfarin wasn’t working and that we could have had warfarin failure, and he at first said no. Then he sent me for another V/Q test that showed active PEs, new ones, smaller than before, but definitely new, that confirmed it. He had no choice but to admit what I’d been telling him for two years at least.

Even so, still no hematologist and no change in my meds. For two 1/2 years, I’d been having chest pains and throwing clots, for two and a half years I’d been telling them…. but they never listened to me until that V/Q scan.

That hematologist said he wished they’d never put the IVC filter in. He said that sometimes clots form on the top of the filters and cause small blood clots to the lungs. Lovely. They never told me that when they asked for my permission to insert it. He wasn’t consulted. Would have been nice to have all the information before I made that life-long affecting noninformed decision.

There were so many things done wrong that I can’t even keep up any more. And the truth is, I don’t