Hello and welcome to another instalment of CurseAvoider diaries. Yes, the name is ironic. I actually got it from an online username generator and thought it was funny all things considered.
I have a dr friend, well, I’ve had them for a while actually, but I still have them, and I originally wanted to ask him about my hematologist’s refusal to establish a certificate. If you missed that, check my posts on my profile.
Instead we mostly talked about treatment options and he cleared it up much better for me than the hematologist has done in months. And that’s not even his specialty.
Basically, the options that I have would be as such:
- Take anti-nausea medication to reduce or eliminate them (and stay on xarelto blood thinners).
- go on the older blood thinners (vitamin K suppressants)
- stop blood thinners entirely and monitor my D-dimer (clotting protein in the blood), then go back on blood thinners when needed.
Each one has their ups and downs though. For example he recommended a nausea medication but I looked into it and you shouldn’t take it for more than 5 days because it can cause irreversible motor damage lmao. I have problems every day all day long so I can’t be taking this long-term.
He said that if I was his patient this is something he would start looking into. And I think that’s the keyword – I need someone to actually consider these options seriously and offer it as a treatment, which means they have to follow up on it as well. Can’t just send me home with blood thinners I have to monitor every week and say case closed. My hematologist kind of threw around these options as well, but as like something I could elect to do. But when I asked “but what is your professional medical advice?” she said “don’t stop the medication, absolutely not”.
I need to know that they’re following my case and taking it seriously. All doctors (them included) tell me a PE is serious and needs to be taken seriously but I feel like they’re just running me around in circles and don’t want to take responsibility for treating me. I’m fine with continuing the disabling xarelto and other NOACs (that’s your word of the day, by the end of this you will be an expert in pulmonary embolisms – they’re the “new” blood thinners on the market) BUT they have to recognize I’m disabled. It makes no sense to say “yes, you have nausea, yes it’s caused by the treatment, yes you have to continue this treatment, but no we won’t do anything about it”
I’m seeing my GP on Tuesday and will be getting her opinion as well. The problem with this GP is she doesn’t know anything about PE and always asks the hetamologist before giving me advice. So basically useless, I can call the hematologist myself.
I’m going to look into getting my case transferred to another hospital that’s apparently better at this type of stuff for a second opinion and to take up the treatment care. Also my hematologist only works on tue. and thurs. which is not helpful when I have an important question about my serious case on Friday morning. I can’t do anything with this uselessness.
Then eventually also consider changing GPs and finding that has experience with PE because she can’t help either. Basically until proven otherwise I need long-term care for this (even if it’s just medication), I have a heightened risk of embolisms and that’s what it is.
I’m glad you are finding paths forward even if none of them are perfect. I’m gonna just hope that this was a one off occurrence and that you can taper off the thinners and just monitor your clotting proteins.
Thanks comrade. I’m not sure yet what the treatment options are but I’m optimistic about getting a new hematologist (hopefully, if the hospital accepts to take my case). One thing is clear my current hematologist is useless, I keep thinking about that appointment where she kept agreeing with me and my symptoms but then refuses to do anything about it. I need at least something, you know, seeing that they take this seriously and understand how difficult it is for me. Not making me run around in circles.
I’m not gonna lie it would suck to have spent 9 months utterly disabled and then have to do protein monitoring or whatever for the rest of my life (and all I get is a “welp, you’re fixed now”), but that’s something I’ll cross if I get there. We have to assume the risk is there so it’s possible I could stop monitoring and live my life normally for idk 30 more years but then suddenly get another PE. But I’m optimistic about the second opinion.
I’m basically repeating what I said in the post lol. I’m still confused at the hematologist. She’s like “well there’s that… but I don’t recommend it”, I had to ask her later in the conversation to learn that I could monitor my D-dimer at home, she didn’t think to even explain the treatment options to me and then she’s surprised I disagree with them too?? Like yeah between the two monitoring my blood at a clinic every week doesn’t seem like much of an improvement, how do you even live with that? Then she sends me off with a “keep me updated in a month or so” as if my symptoms would magically go away. I basically left the same I came in. But really I think what bothers me is that like I said they’re gonna tell me “well let’s just put you on warfarin” and send me off with a pat on the back, and I’ll have to start monitoring my blood and go back to being a good worker drone like everyone else despite this added challenge. No help, no empathy, just “well you have a treatment so you should be fine lmao”
For example he recommended a nausea medication but I looked into it and you shouldn’t take it for more than 5 days because it can cause irreversible motor damage lmao.
This, unfortunately, is what it is to be on meds. You take one for your medical condition, but that one causes side effects, so you take another med to deal with the side effects. Then that med causes side effects, so you take another to deal with those side effects. Before you know it you’re on so many meds you need help keeping track of them. It’s a ridiculous way to live. And the doctors don’t care because it isn’t them living like this.
Also, the COST of living like that isn’t coming out of their pocket, in fact, it contributes to the amount of money in their pocket. Thanks capitalism! 😒
