long term problems?

Subclavian blood clot

by PaceRunner - 2013-12-17 06:12:32

I am 35 years old, a runner, an EKG Technician, and on my third pacemaker (first Pacemaker placed in 1995). My newest pacemaker (three years ago) created some new complications when they inserted a new wire through my subclavian vein. Scar tissue had been building up in the subclavian vein on the original lead wires (again, originally installed in 1995, they lasted through all three pacemakers). My surgeon said that it had been hard to thread the new wire in (now we know it was due to the scar tissue buildup). I soon came to find out that the new wire had created such a tight squeeze that a blood clot had formed and totally sealed off my subclavian vein. Thankfully, the scar tissue build up had been a slow process so some of my collateral veins had already been enlarging and were slightly more prepared to become the “side street” routes for the blood to go back to the heart. I say “slightly” because even though I escaped the worse-case scenario (death), my face and fingers became swollen and I had to sleep sitting up until they figured out what was going on. I was on Coumadin for 6 months until they were confident I was in no danger from more clots forming and the clot that had formed had nowhere to go because of the scar tissue and blocked subclavian vein.
I only share the above story with you so you have an idea how we relate in stories somewhat.
How long have you had your pacemaker? The longer you’ve had yours the more possible scar tissue could be an issue too, which isn’t as risky as blood clots (since blood clots can eventually breakaway). Scar tissue can grow from damage as well. It could be possible that you may have gotten scar tissue from trauma to the vein wall when the lead wire was being inserted.
Since they have taken you off Coumadin I am assuming your body doesn’t have a history of throwing out blood clots. It sounds like you got the clot from the procedure correct?
Did your Doctor clarify what he meant by “it’s slowly getting worse”. Again, the reason I ask is because there is a difference in what is getting worse. If the blood clot is getting worse I would recommend getting a second Cardiologist opinion on whether or not you should have been taken off of Coumadin. If it is actually scar tissue that has built up, yah it sucks, but I’m living proof that it isn’t something that has to limit you too much down the road (aerobic running—google Phil Maffetone-- and beet juice have actually improved my blockages “normal” symptoms that are experienced). If, when your doctor said that it is “slowly getting worse” applies to scar tissue, then it would make more sense to me that your doctor isn’t as concerned since scar tissue won’t break away like a blood clot could. Unfortunately, scar tissue does grow.
At what point should you be concerned? Aside from possibly getting a second opinion on the stoppage of Coumadin if it is the blood clot that is slowly getting worse, don’t ignore it if you begin getting any swelling in face or fingers.
Obviously, I can’t speak to your individual symptoms since mine are not related in that regard. My symptoms are shortness of breath (compared to myself before the blockage) and feeling the blood well up in my face with certain anaerobic activities with no warm up—symptoms that have become less noticeable as I mentioned above.
I responded to your post not because I feel I have any answers for you but hopefully my scenario helps give you some idea of what questions to ask during your next Cardiologist appointment.
Probably goes without saying, but don’t exercise unless you’ve been cleared to do so. If you have been cleared to exercise look into Phil Maffetone’s way of heart rate monitor training (no matter what mode of exercise you like to do—walking, biking, running, ect).
I truly hope you can find your peace with all this. I know it can feel scary.