That's right, you thought this was over, but it's not!
I went to see the new hematologist yesterday. I didn't have to explain too much, she basically agreed straight away that this was not a situation I could continue to be in. To be honest back in January I was reconciled with being disabled like this for the rest of my life, but now not so much. But it's not because of anything fancy, it's just that the side effects (or rather the intolerance to the medication) is getting noticeably worse with time and who knows how much worse it'll get in 6 months, one year, or even 3 years? I can't "coast by" on this medication any longer.
She got me started on pradaxa which my previous hematologist never even mentioned. I'll be trying it out for a month and we'll see how it goes. I'm not expecting a miracle, but it works on a different coagulation factor than Xarelto and Eliquis, so maybe I'll tolerate it better. If not, there's still the old blood thinners (the anti vit K) but it's kinda like being diabetic, you have to manage it for as long as you take it which for me is probably rest of my life. I'm taking it one week at a time though, fingers crossed lol.
The new hematologist also said that my xarelto dose of 10mg a day was too low for my case and the previous doctor shouldn't have recommended that lol. IIRC we dropped to 10mg because we wanted to see if a lower dosage was more tolerable but when it was clear it didn't she shouldve told me to go back up to 20mg?? I don't know if that makes sense lol. Basically I've been on 10mg xarelto since december and after a month when we saw my tolerance didn't improve we should have gone back to 20mg but we didn't.
Oh, since she recommended a higher dosage (even confirmed with her colleague), I also asked if it was safe for me to stop taking the blood thinners for a day or so, as the previous dr said that I could elect to stop it for like a weekend if I was going somewhere that was a concern, e.g. going skiing or smth. New dr said no, don't do that lmao. Only case it would make sense to do that is if I need surgery.
Much better experience overall and she takes it seriously, but I think she also takes it seriously because I didn't ask about disability. Once you do that they put up the stop signs and change the subject. In her opinion we can do the older blood thinners no problem, which my previous hematologist said we couldn't do. I trust the new one more lmao