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.

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Jean1014 09/14/2011

I was wondering how many of you have been diagnosed with sleep apnea?

I had a sleep study back in 2009, long before my pe's, and was diagnosed with severe apnea. I had 40 something events per hour. Silly me, never followed through with the second study because I stupidly did not take it seriously. Even after my PE's, I did not really think about although my pulmonologist did want me to go for another sleep study. She did not however tell me the direct link apnea has to clotting. I suppose I could have made that obvious connection on my own, but I kept brushing it aside.

Yesterday, I went to my ENT who had scheduled the first study in '09, updated him on my health issues, and he is sending me directly to the second study rather than start at the beginning again, which is what I was hoping for. He feels that more than likely the severity of my apnea in combination with my being a smoker is what caused my clot. He is the first doctor who actually verbalized that.

Anyway, again, was just wondering who else has been diagnosed if anyone?

rmb 09/14/2011

Smoker yes, maybe part of the cause, but what is it about sleep apnea that would promote clotting? I've never heard that.

Jean1014 09/14/2011

Here is what I have been told.. One, smoking in general is not usually the sole cause, but in combo with BC or something like that, it plays a role. Two, the doctor told me yesterday that apnea (especially severe) has a great impact on your vascular system, as well as all of your organs really. But he said that the lack of oxygen irritates and adds build up in your veins. I can't remember the exact words he used but I googled the two today and sure enough, read about the connection.

rmb 09/14/2011

Well that's interesting. I've always been of the belief that when they can't pin point the exact reason for clot, it's likely a perfect storm of several factors that caused the clot. This would be an example of that. Crazy.

TossNTurn 09/14/2011

I also had never heard of this connection. I wonder if it is more commonly known among folks who study sleep problems. Just out of curiosity, is it unique to folks with sleep apnea, or does it show up with other types of sleep disorders too?

Jean1014 09/14/2011

"People with sleep apnea stop breathing for about 10 seconds or longer during sleep. This causes a decrease in blood oxygen, an elevation in blood pressure and an increase in the blood protein fibrinogen making the blood more prone to clotting. These blood clots may travel to the lungs and cause pulmonary embolism. "

This is just one of the things I found when googling. When I thought about it afterwards, my pulmonologist, as well as all the others I looked at are associated with sleep study/clinics.

Rmb, I agree... the perfect storm! That is basically what one of the hematologists in the hospital told me due to being borderline on some of the blood tests, smoking, slightly overweight, but never really mentioned the apnea which I find curious!

rmb 09/14/2011

They've never been able to pin down why I've had two separate clotting events. My Hematologist said sometimes it just happens for people and we don't know why because there's so much unknown about clotting yet.

But shortly after my last DVT, my ulcerative colitis went out of remission and so I was seeing my GI doc for treatment. And he told me that having ulcerative colitis can make some people prone to clotting. It was like, really??? It's not a definitive reason and I'm not sure if it was the sole reason, but I do believe it was a contributor.

That's why when people get all uptight about their clots being unexplained, I think, there's so much stuff going on in our bodies for which we have no clue, and the clotting probably isn't from one thing. Frankly, I'm amazed that more stuff in our bodies doesn't go to hell.

Jean1014 09/14/2011

It is amazing isn't it?

I too have some GI issues. It was thought for quite a while that I had Crohn's. Had every symptom, but, two biopsies came back negative and noneof the meds worked. They never did figure out what was wrong. So maybe, that played a role as well. ( for the record, I am am better now)

I guess when you don't have a reason, for me anyway, it just adds to the "will/can this happen again?"

Clotting aside, I am just hoping that treating the apnea will help me feel better!! This every day dizziness, weakness, and so on is getting to be just a bit too much! I am sure though that the lack of sleep, lack of oxygen, and thus lack of my bodies ability to heal while sleeping, is indeed a big factor.

rmb 09/15/2011

Oh sure. I can tell you that I wasted a lot of energy to obsessing over the "why". I was so stressed about not knowing the specific reason initially, but after talking to my hematologist about all the unknowns, I just had to accept that I may never know, and that had to be good enough, so that I could move on with my life and feel sort of normal again. Sometimes, trying to get to the bottom of it just often ends up being an exercise in futility.

LauraLu 09/15/2011

This is really interesting Jean. I had read about high blood pressure being part of the cause of clotting - because of the damage done to veins, and if one has a genetic reason or other reasons for clotting, it can all add up. So in that light, sleep apnea would make sense as a risk factor. I am curious, did you have bloodwork done for the genetic risk factors too?

Jean1014 09/15/2011

I did LauraLu, when initially in the hospital. A few did come back borderline, and for the life of me I can't remember which ones! :o) However, all the doctors I have seen since kind of brushed those results off for now. I am due to come off coumadin in November, after a hopefully clear leg ultrasound, to be retested. So I guess I will know more (maybe) then. In the meantime, sleep study with the cpap tomorrow night! Fun fun! lol

kerenza 09/15/2011

I was diagnosed with sleep apnea last year. I was having 73 episodes an hour so it was very severe. On the cpap I now average 9 episodes in the whole night!
I do have the factor ll mutation but was told it usually needs other factors for that to really be significant. Looking back I had been seriously tired in the day for a while before I clotted so maybe that did have something to do with it.
You will find the cpap machine makes a massive difference!!

Jean1014 09/15/2011

WOW 73?? Whoa! And I thought I was bad! Did you have trouble adjusting to the cpap? Is it the full mask? I am a little concerned about that part.

kerenza 09/15/2011

Yup it sure explained why I was dropping asleep in a heartbeat lol. I spent 2 weeks in hospital with the clot and most of it with a full oxygen mask on. I think this helped when it came to the cpap, I did have a panic for the first few times because you have to have it fitted snugly but now I don't mind it at all.
I chose the full face mask because with the nasal one you have to try and only breathe through your nose.. not much use if you have a cold. I treated myself to a humidifier to go with mine as my nose and mouth got a bit dry, definitely worth thinking about :-)

Jean1014 09/15/2011

My partner was recently diagnosed with moderate sleep apnea, and is using the full mask. To see the difference in her is what prompted me to get my butt in gear and do something about this! I tried on the mask to see what it was like, and yeah, kinda freaked me out a bit. However, I can't imagine the nasal one is all that effective if like you said, you have a cold, or simply tend to sleep with your mouth open. I guess I will just have to get used to it. Other than a mouth piece, I don't like the other alternatives (surgery)! At my first study, my oxygen levels dropped to 81! Yikes! Yet somehow, the seriousness of it still did not hit me. Slapping myself in the forehead now! LOL

kerenza 09/15/2011

Honestly if you stick with it you'll soon get used to it. I read a book to get me through the initial panic bit or listened to my mp3 player. I didn't really think sleep apnea was dangerous but the more I looked into it the more determined I was to make the machine work for me. It's not the most attractive night attire but as you say it's better than the alternatives

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