I’m not a pharmacist. But my Aunt and Uncle are (hi Jill and Bill!). And I’m not a doctor. But what I’ve read and read and read about blood thinners since I started having issues and I’ve mentioned, was shocked at the side effects a good percentage of the population suffer from. And those side effects are usually brushed off or the patient is told they NEED to keep taking the blood thinner for xyz reason and no they can’t stop. I’ve read enough about the dangers of stopping cold turkey and that is something I would never do, but I look forward to the day I get to actually wean off and no longer take…per doctor's orders of course.

My grandpa was one of the unfortunate ones who had blood clotting right issues after he was vaccinated. He had a pulmonary embolism and I remember at the time reading up on it thinking how scary a PE was (still scary!). He spent a good amount of time in the hospital and has had to be on blood thinners ever since. I was talking to my grandma about how mine were causing me misery and she said my grandpa refers to his blood thinners as rat poison. Ha! Put that on your next TV commercial, Xarelto! I couldn’t have said it better myself. (Is this where the disclaimer goes that I know everyone’s experience is different and I’m no doctor…?!)

Two days ago I couldn’t take it anymore. I was about to go into the ER, which I probably should have a week ago. I went to my bin of twelve million drugs from the last six months and pulled out the Eliquis. I was on it when I had the blood clot in my SVC. Both of my clotting issues have stemmed from devices - my SVC clot was close to the end of my dual port. My DVT in my left arm had the largest clots right where my picc line had been the week before. This leads me to think that I have less of a body clot in general issue and more of a medical device induced thrombosis issue. That actually gives me a lot of hope because I shouldn’t have any more implants anytime soon! And I guess it gives me some knowledge too…if I ever need a pacemaker or another device I’ll know the clotting likely needs to be addressed from the start as well.

After my port was installed last August, I was very briefly on Xarelto. Each weekly round of chemo I was given Lovenox injections daily. After my clot was found in my SVC in December I was briefly on Xarelto again, then Eliquis, then totally off and given Lovenox in the hospital so we could stop the blood thinners at any time and that I could go into surgery if needed (I wouldn’t have been able to on day 1-3 as I could have bled out from the blood thinners I was taking). Then this time around with DVT I was prescribed 30 mg of Xarelto for 3 weeks and then 20 mg daily after that. 

Switching from the Xarelto to Eliquis made a 180 degree difference in my breathing and bleeding issues. In two days my bloody noses have stopped. I am still weak and tired, but I can get things done. The hardest part now is stopping to rest, because I know my body still needs it. Saying no to a couple more loads of laundry or finishing the dishes or the other 50 things on my list that I am now almost physically capable of doing. Today Forest and I made sourdough bagel dough (we’ll see how our batch of fresh bagels turn out tomorrow morning!), painted, colored, read books, sorted, and more. Being physically able to do those things felt like a miracle. I also know that my body is healing and I’m so thankful for that.

I am very aware that I shouldn’t have changed my meds without a workup or a doctor, but today I was thinking about that and I feel like I don’t ever want to walk into the hospital again. Any hospital. I don’t want my blood drawn. I don’t want to get in a CT or MRI or PET scan machine. I don’t want a workup. And I think that is why I was so hesitant to go in, even though I didn’t realize it at the time. Thinking of any department or area of the hospital gives my body immediate heebie jeebies... I'm probably going to need some time to work through that one...ooof!

For the heck of it I did some further reading on each of the blood thinners as I was thinking if the Eliquis didn’t stop the side effects I would ask for one that I have to put with a needle into my stomach myself as I knew that didn’t cause me the issues that Xarelto did. With that, I was on the Xarelto page and then clicked the meds it interacts with button. I’m not sure exactly how it was missed, but the other main medication I take daily is listed under “Monitor Closely” and says will increase effect of Xarelto by pharmacodynamic synergism (I had to look that up). And then it says may increase risk of bleeding.   

Whether it was the fact that it actually was interacting with my other medication or just that my body couldn’t take it, I am thankful that I have turned a corner and am also hoping that at my checkup the DVT in my arm will be cleared up...or at least quite a bit better. The pain has reduced to about 25% and swelling is minimal. My blood oxygen today in my left arm has been between 89% and 98%, which is the best it has been.

And a random interesting thing about blood oxygen and my clot… For Christmas I got a single amazing gift from Preston and Ethan - a Samsung Galaxy Watch5 Pro. I loved my old Galaxy watch dearly, but I have repaired it a few times in four years and after a nightmare day in the ER in December with me vomiting all over the place and staff and a moment of me not even remembering them removing my watch - the memories tied to that rose gold beauty had been soiled. 

Back to my new watch - it is of course a major upgrade as it is newer and has more features than my old one. After I wore it for a few days I wondered if it was broken as one night it kept beeping that my blood oxygen was at 71%. I thought great, I got a lemon of a watch because there is no way in this world my blood oxygen is 71%. It didn’t even occur to me until after they found the clots in my left arm that the numbers it was pulling weren’t mistakes as I have an at home pulse oximeter and it was matching the watch numbers when they’d drop. After I found out about the clots, I moved my watch to my right arm for the heck of it (after I panicked of course!) and my blood oxygen was 98% (97% of fingertip pulse oximeter). 

I’m still a little confused as to why it could drop that low (poor circulation from the clots?), but from the data on my watch it is slowly getting better. Being that my range on my left arm was 71% to 92% on 12-26 is now improved to 89% to 98% (today) makes me hopeful that I’m headed in the right direction. ;)

Happy Weekend!

Aimee