Self pitying whine... I guess I'll be doing du's...

I've been doing tris for the past 6 years. I started doing them after I got a pacemaker. I don't do more than 2 a year, but I do enjoy it. I love the training.

Well... Tuesday afternoon while I was getting ready for work I noticed that the veins on my neck, chest and arm on the left side, where the pacer is, were swollen. I felt fine otherwise. Yesterday I called my cardiologist. To make a long story short, after spending 5 hours at the hospital getting a chest xray, ultrasound and a venogram, I have a large, obstructing clot in my subclavian vein and internal jugular vein. These are the large veins that drain directly into the heart. The pacemaker wires go through the subclavian.

The only thing we can think of that caused this was the swimming. It's not definite, but we can't think of any other reason. The cardiologist thinks the arm motion from the swim stroke irritated the lining of the vein and caused the clot. A clot like this 6 years out is really unusual. At least they don't usually embolize to the lungs... usually.

So now I'm going to be on coumadin, an anticoagulant for at least 6 months and maybe the rest of my life. I can't swim. At least until we get the coumadin dialed in I can only ride the bike on the trainer and run on the treadmill.

I'm really depressed. Coumadin is in the top 5 of the list of meds that I never wanted to be on. It's a life changing drug. You have to monitor it to make sure you aren't over-anticoagulated. You have to watch your intake of certain vegetables because they can affect the drug. Any small contusion can turn into a big deal. feh

I'll learn to live with it and it'll become second nature. I know this. But right now it's overwhelming.

:mad::mad::mad: That really sucks. I"m sure you know we'll all say - better you're here and not swimming than not here at all (and we mean it!!) - but it's still frustrating. ;)

Roadie, I am really sorry about the whole ordeal! I am sure you will find your way to live with it and be happy but before you do such drastic changes to your life, please do seek out a second AND THIRD independent opinion. (sometimes the doctors offer to see his colleague at the same hospital or so, but that is not really independent opinion). Your insurance should cover it.

I wish you really the best possible outcome out of this!

M.

I can imagine you are frustrated, but this, too shall pass. While maybe a second opinion is indicated, the routine for Coumadin is fairly established. I believe there's more than one person on this board who's been through this.
DH has been on Plavix for 5+ years. While it doesn't need to be monitored with quite the same attention, it does cause an annoyance with every little cut/bruise, or minor bike crash. But, eventually, you learn to deal with it.
Good luck!

Roadie -- I'm sorry to hear about your pacemaker.

Thank you everyone for the support.

I was able to see the ultrasound and the venogram (I'm an ER doc). There's no doubt about the diagnosis and the treatment. I'm happy that it's a clot and not a tumor obstructing the vein, or some kink in the vein that would require surgery or removal of the pacemaker. It could have been much worse.

Coumadin is just a very scary drug. Being in the ER, I see all of the complications that people get and none of the people who are doing well with it. So I have a skewed view of these things. I understand that, but I'm only human and it's scary.

The new anticlotting drug is still in the works. It's basically an oral form of heparin. Once it's out, it should revolutionize the treatment of blood clots. BUT I don't want to be the first one on it. I'd take it after it's been out a year or 2, after all of the unexpected side effects and other problems have become apparent. It's the same as not buying a new car in it's first model year.

I am so sorry to hear that you are dealing with this. DH has been on coumadin in the past due to a PE. You are right, it is not a fun drug. On the positive side, after a few months it becomes your normal and not nearly as onerous as it seems when you begin.

I am so sorry, Roadie. I can only imagine how disappointed you are but better to be with us and doing du's than not with us at all. Hang in there and keep your chin up.

I'm sorry to hear about this. I do know a few people who are handling Coumadin pretty well -- not one has ended up in ER. I'm sure it will work out, but I can sure understand your disappointment.

So glad you went to your Dr. and figured out what was going on before it developed into something serious!

Any lifestyle change can be frustrating, especially the unwanted ones. Hope you get your dosages dialed in soon and figure out a new normal that makes you happy.

I'm sorry to hear Roadie, that this development is just making life for you more complicated long term.

Stressful!

Hang in there.

Aw Roadie, I'm so sorry that happened to you. :(

Hang in there.

Thank God that it was found before that clot moved somewhere it shouldn't go. Please don't lose your joy because of this... you can find a way!

Wow - scary stuff. Indeed, it is great the clot was found before more damage was done.

Having more experience than I'd have liked with blood clots I was on coumadin for 6 months as well. There's a statistically higher chance for me to clot again since I have clotted once already, and I'm quite appropriately paranoid about chest pain these days. If I clot again, it is coumadin for life. I would suspect you're in a similar boat - get through the 6 months and then see how you do off of it. However, with the pacemaker is that enough of an increased risk factor where they might want you on for life?

I got through the 6 months. It was tough but doable. I didn't spend a lot of that time on the forum because I missed riding so much that it made me sad. Though my immediate reaction to the whole thing was similar to how you sound - mad at having to change my exercise routine (for me, I had to miss Death Ride that year). I had to keep reminding myself how very lucky I was that my PEs were diagnosed before they led to a stroke or worse. So try to see the silver lining in it all - though I know that's tough.

Oh - and I didn't have any problems on the coumadin. Get yourself an emergency bracelet, though, so if you are in an accident or something people know why they can't stop you bleeding.

that altogether sucks.
I am just telling you my not so horrible story of coumadin which I have been on since april, I have over anticoagulated and underanticoagulated, but eventually got the dosage right. Mostly I eat green 2-3 times a week, and did that so that the dosage would be set to that, then I ate too many veggies and dropped to 1.34, then they upped the coumadin to compensate for the veggies, etc. etc. I still cut myself frequently, you know, grating something, or pulling something open, but they coagulate anyway, even if it is slower than usual.
the bracelet is a really good idea.
I still don't cycle or run from the hip fracture (hope to start next week though), and only swim, so cannot help you on that one.
I hope I don't have to anticoagulate the rest of my life, cause I would like to get pregnant! (like is an understatement here)

OK, remember you work in an ER. You see the bad stuff. It skews you.

I'll be on Coumadin for the rest of my life. DVTs and a constellation of PEs will do that. I miss my leafy greens, actually I crave kale, but I do what I have to do and not let it stop me. So will you.

That sucks.

Just to make you feel a leetle better though, perhaps, my grandmother was on coumadin for the last 20-25 years of her life, at least, due to heart issues. Once she got the dosage adjusted, the biggest annoyance was having to go to the dr. to check her levels every three weeks, which she had to plan (and travel) around. Other than that, not many problems, and certainly no ER visits.

She lived until 94. May you do the same! :D

That sucks! When your battery runs down, is there any way they could put the next pacer (or I should say the leads, since those are what's in the vein and apparently irritated it) somewhere that it won't create that problem? Of course, they'd also have to take out the subclavian leads that are currently there which could be pretty difficult...

Quote:

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Originally Posted by Jolt

That sucks! When your battery runs down, is there any way they could put the next pacer (or I should say the leads, since those are what's in the vein and apparently irritated it) somewhere that it won't create that problem? Of course, they'd also have to take out the subclavian leads that are currently there which could be pretty difficult...

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When they replace the pacer, which is hopefully not for another 5 years, only the box gets replaced. They use the same wires that are already there. The wires scar into place over time. Pulling them out would destroy the vein. OUCH!