This 'n that ......updates

Back in July I posted about a clot found in my subclavian vein.  First attempt to clear it was doubling my Eliquis for 3 days then repeating the ultrasound.  No change, clot still there.  Thrombectomy was discussed, but my cardiologist was concerned about infection and felt that at that point the risk outweighed the benefit.   She steered me to a hematologist for blood work to check for any blood clotting issues. 
Blood tests (12 vials of blood taken) showed nothing problematic.  Cause of clot now assumed to be from my pacemaker leads in the vein and the failure of Eliquis to prevent it.  Next step was a six-week course of twice daily self administered injections of Lovenox in my abdomen.  84 shots.  Good grief! And me a needle phobic.  Ha!  I guess I got over that!  Lol.  Anyway, follow up ultrasound last week on Monday showed a clear vein and no clot. Yay!  My hematologist was very happy, but surprised at that result as she had only expected a reduction in size of clot.   So now I'm on a 20 mg daily dose of Xarelto with another ultrasound down the road sometime to see how that area in vein is doing.   (Incidentally, for anyone taking 15-20 mg of Xarelto, be sure to take it with a full meal.  Smaller doses can be taken with or without food, but those larger doses need a meal to function properly.)

Moving on, last Friday at 08:25 AFib struck, my first episode since last July.  My Kardia Mobile also confirmed what I was feeling.  Took my morning Sotalol dose at its scheduled 08:30 time and tried to manage the AFib with Valsalva maneuvers, coughs, distractions, anything.  Ninety minutes later it stopped like an on/off switch and I was back in NSR.   Another Yay!

And finally yesterday I went and got my Pfizer bivalent booster.   After my first 3 shots I had a 6 hour spell of malaise the following day, but this time I've felt absolutely nothing, not even a sore arm.  My third Yay!  They come in 3s, 'tis said. 

Stay well everyone.  And try not to stress over the World Cup.  :- )



Good news all round then ?

by Gemita - 2022-11-24 06:43:20

Hello Daedalus, what a journey you have had but it seems to have paid off.  Very good news that the clot has been effectively treated with those gruelling Lovenoz shots.  I can well believe the clot was caused by the pacemaker leads in the vein which is a known complication unfortunately.  I am though less inclined to blame it on the failure of Apixaban to protect you during the implant procedure since even if you had been on Xarelto at the time, I feel the outcome would have been the same.

I hope you will be able to tolerate long term Xarelto, but if not and you continue to have no sign of another clot forming in the same area, you could always ask about going back on Apixaban which appears to have both reduced rates of severe bleeding complications as well as strokes according to published data (see link).  Now that your subclavian vein has had time to heal from the mechanical impact of the implanted lead(s) on the vein wall and your blood is flowing freely again, you should be better protected in any event from getting another clot, especially if you keep active and keep that AF under firm control.

Which Kardia mobile do you have Daedalus, one lead or six lead?  Are you able to read your own ECGs or do you take or send these in to your clinic for assessment?  

I expect the Sotolol helped to calm your AF episode last Friday since it acts as both a rate control and an anti arrhythmic medication.  It is always better if we can find ways to manage our intermittent AF without running for help, although I appreciate this is not always possible if the heart rate cannot be controlled.   Like you, I find that episodes of AF which start and stop for no particular reason, can usually be well managed at home with a variety of measures, including positional changes, good hydration (and not from alcohol) and staying calm, easier said than done I know.

Great news and I am so pleased for you.  America for the World Cup?


by Lavender - 2022-11-24 07:51:20

What an astonishing journey you've been on!

Love reading about your positive attitude even in the face of all you've endured!

Much for which to be thankful! 🦃

Interesting Side Note

by benedeni - 2022-11-24 14:15:51

Glad most things are going well for you, Daedalus.  Especially glad the tummy shots are over.  I share your needle phobia and also the fact that I didn't have a reaction to the 3rd booster either whereas every other one caused mild flu-like symptoms.  

You have a terrific heart doc so you are in very capable hands.  Stay well and no more A-fibbing!  


by Daedalus - 2022-11-25 17:40:43

Thanks for those encouraging responses.  Much appreciated!

Btw, Gemita, agree with you on  the Eliquis.  Getting back on it would be my preference down the road, depending on ultrsound results, feed back from docs, etc.  As for the Kardia Mobile, I have the six-lead model, although I mostly use the one-lead  option for readings.  I also have QALY (formerly known as "Read My ECG") which is nice as a further backup since the ECG techs read the result from the Kardia and very quickly send back their interpretation of it.  Reading an ECG, I've found, has a great many nuances, so I myself focus on the QT length as that is important when taking Sotalol. 


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I wouldn't be alive if it wasn't for pacemakers. I've had mine for 35+ years. I was fainting all of the time and had flat-lined also. I feel very blessed to live in this time of technology.