Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
cjmenjou
That they told you not to? I hope this post doesn't cause too much consternation, and is taken in the spirit offered, but when I was first diagnosed in July 2009, there was a whole laundry list of things I was not to do on coumadin (not all of them accurate) - no drinking, no green leafies, no bike riding, no skiing, no this, no that. And, no walking outside barefoot (!!?!!?!!)
We see a lot of scared newbies posting here, we were all there once. Reading that other people continued full and happy lives while on thinners really helped me get through the depression, and to see a future ahead of me. I think this post is inspired by Dab and the reluctance to plan ahead because some other shoe might drop.
I refrained for the first 6 months from doing all the taboo things, since the risks didn't seem to outweigh the rewards of not doing something for so short a time. After the second PE in March of this year, and a resulting lifetime, I mean "indefinite", course of coumadin, I decided that certain risks were worth it if I was going to live another 40-50 years on this planet (hopefully). We're all going to die from something someday. Hopefully it's not until we're old and crotchety. But I can guarantee it will happen. Personally, I'd have hated to not ride my bike, or dive, only to go by slipping getting out of the tub.
So I decided to treat my coumadin as an annoyance and do the things I want to. Yes, I do things differently, taking into account certain practical limitations with regard to the risks of being anticoagulated.
It also might inspire people to dream about doing things they thought they never could, or never thought of, and to "get out and do sh*t," as rmb says,
So, in that spirit, what is it that you do on coumadin that would probably make your pulmonologist roll his or eyes?
I scuba dive
You?
We see a lot of scared newbies posting here, we were all there once. Reading that other people continued full and happy lives while on thinners really helped me get through the depression, and to see a future ahead of me. I think this post is inspired by Dab and the reluctance to plan ahead because some other shoe might drop.
I refrained for the first 6 months from doing all the taboo things, since the risks didn't seem to outweigh the rewards of not doing something for so short a time. After the second PE in March of this year, and a resulting lifetime, I mean "indefinite", course of coumadin, I decided that certain risks were worth it if I was going to live another 40-50 years on this planet (hopefully). We're all going to die from something someday. Hopefully it's not until we're old and crotchety. But I can guarantee it will happen. Personally, I'd have hated to not ride my bike, or dive, only to go by slipping getting out of the tub.
So I decided to treat my coumadin as an annoyance and do the things I want to. Yes, I do things differently, taking into account certain practical limitations with regard to the risks of being anticoagulated.
It also might inspire people to dream about doing things they thought they never could, or never thought of, and to "get out and do sh*t," as rmb says,
So, in that spirit, what is it that you do on coumadin that would probably make your pulmonologist roll his or eyes?
I scuba dive
You?
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I still scuba dive, mountain bike, travel. I just stay an educated patients and research things or talk to my thrombophilia specialist when in doubt., listen to my body, and are a little more conservative (when biking off-road). As my friend Dero says, there is Live after DVT. Being on anticoagulants may be a part of my life, but is not restricted it.
When I was first put on blood thinners I was told to avoid all contact/risky sports like...riding bikes, horseback riding, football, no drinking, no walking barefoot outside...the list goes on. And at first I admit I was terrified I'd bleed to death if I got bumped or hit. But truth is we can get hurt just walking outside or driving somewhere.
So I chose to do things I did before blood thinners...I still horseback ride (though my doctor says not to), I still climb rocks at the local fossil bed (and yes have gotten scraps that bleed a bit more then before), I still shave my legs with a regular razor, I walk outside barefoot in the summer, I still do things.I do use more caution though and I now ride my horse with a helmet, I listen to my body and I don't attempt things if I don't feel up to doing them.
But life is just that...life, and it can be taken from you at anytime, doing anything so why let a little blood thinner pill inconvience your life? that's my thoughts.
I may or may not return to drinking the beer someday.
So far there has been only one bad spill on the bicycle.
For many of us, the trouble started by sitting down. If you cannot even sit on your ass and be safe, you may as well live.
12 & 24 hour bicycle races.
Hiking in remote areas with no cell phone or medical access .
Having a little more wine or rum & cokes than recommended.
:)
Robert
1. Eat spinach every week. I'm consistent and my INR is fairly stable now.
2. Shave with a razor. I hated the electric razor and getting a nick really isn't that big of a deal.
3. Mountain bike but more cautiously than before.
4. Sky dive
5. Downhill ski but more cautiously than before.
6. I missed the one about walking outside barefoot but I do that too.
7. Today I ran with scissors but I don't make that a habit.
SO what exactly do I do that I am not supposed to...
I eat cranberries
I drink beer and get drunk at least one day a weekend.
I eat broccoli and lettuce when I please, just not big amounts of it.
I walk barefoot although I try to avoid that one. I hate getting my feet icky.
I shave with a regular razor
and I challenge the Klingons whenever possible. :)
I volunteer at the local animal shelter and did show caution about taking some of the bite risk dogs. (I was also very dizzy so I didn't want pass out because some large ill mannered pitt was pulling so much I passed out. One time I took a bigger dog out who was not a puller. Little did I know there was a dead deer just up the road...so I had this 100 plus pound dog dashing to smell the dead thing..into the bushes I went...LOL)
I spending this winter ( about 3 months) skiing in Mai
I spending this winter ( about 3 months) skiing in Maine
Honestly. I wasn't given a lot of restrictions, if any, that I recall. My doc and nurse who treated me for my PE/DVT really made it seem like it wasn't a big deal, which was hard to get my mind around at the time because what you read and hear was so contrary to that. So, once I became a warfarin lifer due to a second clot and had a better understanding of warfarin and INR and all that jazz, I thought, you know, this really isn't that big of a deal. It's manageable. I want to be happy. I want to feel whole. So may of us are young, and by that I mean younger than 80! We have things we want to do in our time here. I couldn't imagine restricting myself for the rest of my life.
It was someone on either the PE or the DVT site who said they gave up what the loved the most- sailing, because of the risk of a head injury. That's a personal choice to give that up and this is in no way a judgment, but for me, there's no way. I'd be more aware of things and perhaps more cautious, but I'd still sail. I'd wear a helmet if it made me feel better. But those are choices people have to come to terms with on their own.
Be sensible, but holy cow, if WE don't know that life is too short , who really does? Get out and do sh*t, indeed.
Good discussion, cjmenjou.
Life changes in an instant is what my ICU doctor told me when I was admitted with my PE. So, we have to just find a way to live like freakin' gods- with meaning, with intent, with gusto.
There are a couple things I don't do anymore, that frankly while coumadin was the catalyst, it's probably a good idea anyway. Like bike riding early in the morning in the dark on weekdays (with lights). Ride inside instead on those days.
I also haven't yet come to terms with going on remote trips for diving. Some of the trips my friends go on, and I used to go on, are at least a full day away from medical help. I think that needs to be re thought and taken into consideration. So I guess there's a few things I don't, or won't yet, do while on coumadin
Chris