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Old 09-08-2012, 08:11 PM   #1
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Default Back because I almost died....

This August I almost died. Why?? I was diagnosed with a Pulmonary Embolism.

I could not breathe after walking up one flight of stairs. It was so bad I scared my colleague who I share an office with. In the following days, I went to the doctor and he thought maybe it was anxiety because I have a very stressful job. He prescribed xanax and an asthma inhaler told me it I should feel better. After a day of trying just the inhaler it was no better. I called him back and he had me come in for a chest X-ray with the pulmonology department. The intern who was working that Friday afternoon did not see anything on the X-ray so he ordered a CT scan Monday morning and told me to go home and rest. I followed orders and had the CT scan Monday morning. At 11 PM that night my primary care doctor called me and told me to pack a bag and come to the emergency room immediately. I had a large blot clot in the pulmonary artery between my lungs and heart. I was scared beyond belief. The doctor kept saying how lucky I was that they found it and I was very stable in vitals. Thank God for that intern!!

In the days that followed I was placed on an IV of Heparin (blood thinner) and Warafin (oral blood thinner) along with my high blood pressure meds. They did a large amount of tests and 9 days later I was released from the hospital. The clot is still there but with the meds my blood pumps normally and there is supposed to be no chance of it getting bigger. I have no other clots in my body and now they just check to see if the clot will dissolve on its own.

Scary days ahead. I have to lose weight for sure. I cannot exercise because of my condition for now. I can take walks unless I feel uncomfortable then I stop. I hope all goes well and wish I had lost the weight before this all happened.

What caused it? They think it was the meds I was on for another issue. I do fly long flights and just did two 14 hour flights in June and July. They just know for sure there are no other clots which is pretty much another lucky break.

I am back here because I want support as I try to deal with weight loss and this problem. I know time will tell if the clot is gone but it varies with different people how long it can take.

So I am back here……and yes….I am lucky to be alive. It is like a surreal dream.
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Old 09-08-2012, 08:13 PM   #2
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That's very scary, Darlene, but it's good to fix it now while you're still alive than have your family wishing it had been done when you've passed. You can do this, just take it one choice at a time!
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Old 09-08-2012, 08:23 PM   #3
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Back, DOLLY ~ am sending up some ^prayers^ that clot will dissolve for you; and for your re-newed WL journey back to good health. I had a similar thing happen when I broke my left calf several years ago; and yes, it can be very, very scary. Indeed, thank GOD for that observant medical worker ...
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Old 09-08-2012, 08:29 PM   #4
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Welcome, Darlene, praying that health will be restored.
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Old 09-08-2012, 09:20 PM   #5
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Welcome back. Holy cow I would have been scared too! I'm glad they found it and you will be able to recover.
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Old 09-08-2012, 10:05 PM   #6
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Welcome back Darlene; that must have been so frightening.
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Old 09-08-2012, 10:16 PM   #7
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Glad to hear it was caught early and treated! I had a PE scare 7 years ago when I was pregnant with my twin girls; one of the scariest days of my life, but it turned out to be something other than a PE.

Wishing you good health!
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Old 09-08-2012, 11:17 PM   #8
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Darlene,
I suffered a massive pulmonary embolism in November 2009. That one almost killed me. My clot was large enough to break in half and nearly totally plug both of my pulmonary arteries, just as they exit the heart (which sounds like where yours was, too). That area, for a size comparison, is about the diameter of a US quarter. I (and you) had a 75% chance of dying (don't mean to scare you). Unlike you, I was released from hospital (at my request) only 2 days later, but I did have daily injections of warfarin at the hospital for a week, followed by 6 months of oral therapy.

I know exactly what you have gone through and what you are going to go through.

Be prepared for some shock in the coming weeks. It took me about 4 months before I stopped breaking down at the weirdest things just b/c I could have been dead instead but survived. Be prepared to feel like CRAP for a while. It took me a YEAR to recover, when the doctors said it should only take 6 months. The clots were gone by then, but it's just your body trying to recover from a massive injury.

My clot was caused by the birth control pill Yasmin. Because of it, I'm no longer allowed on ANY hormonal birth control (pills, patch, or injection) and I cannot take Plan B if I ever -need- to. If I ever become pregnant, I will be high risk for another clot and for miscarriage and for increased bleeding. I am involved in the Canadian class action lawsuit against the makers of Yasmin.

One thing, do not push yourself. For the first 3 weeks, I got out of breath walking 10 feet. So I did everything much more slowly. My friend joked that it was like I was 80 years old and I felt like it. Push yourself, but don't OVER push yourself. Don't try to go out and walk 2 km (like I did, a week later) lol

If you need anyone to talk to or vent or ask questions, let me know. I am here for you.
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Old 09-09-2012, 04:59 PM   #9
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Thanks Everyone.

@Rainbow:
I feel exhausted everyday but I try to walk some each day...yesterday however I did almost 3/4 of a mile and it was way too much. I was dizzy and light headed by the last 1/4 and wish I had not gone. My sister said I did well but I think I would of done better with just a couple of short walks.

I am supposed to go back to work this morning for a 1/2 day and then have one of my weekly warafin blood checks this afternoon. I will probably keep the 1/2 day schedule this week.

Yes like you they think it was from birth control pills. Not Yasmin but another one I was taking.

I am wondering how old you were when you went through this? I am 48. How long did it take for the clot to dissolve? How did they know it was gone? I know it varies with each patient but I am curious. I want this "thing" gone.
Did everyone assume you were back to normal after you left the hospital? I have people thinking it is all gone and I am back in action. Seriously??
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Old 09-09-2012, 05:48 PM   #10
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DollyR, very sorry to hear that you've had to go through this. Please take good care of yourself and follow medical advice closely.

I too suffered a major pulmonary embolism 2 years ago, most likely due to a combination of being bed-ridden after a surgery and being on birth control pill. It started as a deep vein thrombosis (I thought I had twisted my calf muscle and did not have it checked out) and one week later while doing the dishes, I felt a sharp pain in my chest, became short of breath and passed out. Thankfully my husband was there and I was rushed to the hospital where they diagnosed me. Both lungs were severely affected. I was discharged after 7 days and for the first week at home, had to inject myself with Lovenox to stabilize anti-cloth agents in my blood and then was put on warfarin for a year.

The first year, I can say that my energy level was not the same. I especially felt it when I went back to work or when I wanted/ had to walk for certain lengths of time. I am now feeling normal, but cannot go back on birth control. All I know is that if I have to undergo surgery or want to go on a long plane trip, I should inform my doctor ahead of time to be prepared. Funny thing is that I never panicked or felt any fear, I think I was overcompensating for my husband feeling so helpless. To this day, though logically I realize how serious the situation was, emotionally I've worked through it and am fine now.
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Old 09-09-2012, 11:15 PM   #11
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Welcome Darlene! Wow that was a wakeup call wasn't it? We are all here to help eachother get healthy and not only stay alive , but thrive.
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Old 09-10-2012, 10:10 AM   #12
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Welcome back, Darlene! I hope you get better soon. Some family members have had your experience, and it is scary. Take care of yourself.
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Old 09-10-2012, 01:22 PM   #13
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A good friend of mine had the same issue. She was in her late 20's when it happened and obese. They think her's was related to a injury she sustained on her calf (giant bruise from falling during a paint ball game) and perhaps birth control.

Health issues sure give us wake up calls, don't they?
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Old 09-10-2012, 02:45 PM   #14
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Quote:
Originally Posted by DollyR View Post
Thanks Everyone.

@Rainbow:
I feel exhausted everyday but I try to walk some each day...yesterday however I did almost 3/4 of a mile and it was way too much. I was dizzy and light headed by the last 1/4 and wish I had not gone. My sister said I did well but I think I would of done better with just a couple of short walks.

I am supposed to go back to work this morning for a 1/2 day and then have one of my weekly warafin blood checks this afternoon. I will probably keep the 1/2 day schedule this week.

Yes like you they think it was from birth control pills. Not Yasmin but another one I was taking.

I am wondering how old you were when you went through this? I am 48. How long did it take for the clot to dissolve? How did they know it was gone? I know it varies with each patient but I am curious. I want this "thing" gone.
Did everyone assume you were back to normal after you left the hospital? I have people thinking it is all gone and I am back in action. Seriously??
Hi Darlene!
Yes, 3/4 of a mile still so soon after your injury was probably too far. Mine happened on November 19/20, and still by Christmas that year I was unable to even walk a flight of stairs. I went Christmas shopping with a friend of mine who had a good time making fun (all in good fun) at me for walking like a 90-year-old, but I really couldn't go any faster! A week after my event, I went on a 2 km walk, and that night was back in the hospital unable to breathe, thinking it was another clot. All night and all day wasted for them to tell me I overdid it. Take it very easy, you don't want to overtax your recovering respiratory system. Since I worked in the hospital, I saw some of the doctors that treated me and I usually got harped at when they thought I was walking too fast, even to the coffee shop! (lol)

The half-way sounds like a plan. I'm not sure what type of job you have, but if it's a sit-down job like mine is, make it a priority from now on to get up once an hour and walk around, even if it's in place, for a few minutes. Point your toes, as this causes the blood to rush faster through the veins (that's what the ultrasound tech told me when she was doing my ultrasound, that didn't find any clot!). If you're on your feet a lot, maybe consider having yourself fitted for compression stockings. If you fly a lot, those would probably be a good idea anyway. You can get them in but the really good ones need to be professionally fitted. I'm not sure what the health care is like in S. Korea, but here in Canada we can get them prescribed to us, so the cost is covered. They're about $80-90 here.

When I had my clot, I was 24, which is what they believe contributed to me surviving it. I have a strong, healthy heart (even though I'm overweight) and that was probably my only saving grace. My heart was able to handle the massive clot pass through it without sending me into cardiac arrest (for which they had me on a monitored bed all night because they were scared I was still at risk for suffering a heart attack). If you have no heart problems, that's also probably why yours managed to keep going through the injury.

The clot is MOSTLY dissolved after they start you on IV therapy. Because you had a much longer run of IV therapy than I did, who chose 2 days of IV and then 7 days of injections, your clot is probably almost completely gone. The reason for the 'blood thinners' now is to stop a recurrence of the incident. It's so you don't get another clot. The clot you have is likely nearly completely dissolved. The problems you have now with breathing and fatigue, are the after-effects. They're signs your body is trying to heal. A blood clot like ours is a MASSIVE injury and both the heart and lungs are trying to recover, which causes the fatigue as they use a lot of energy doing so. The blood clot though, is likely nearly gone. You should have another x-ray, though, in 3-6 months which may reveal how dissolved the clot is (it should be VERY VERY tiny at that point).

My boss didn't seem to understand the severity of my incident. In January (after having the clot in November, taking 3 weeks off on sick leave, coming back to work for a week, then having a week and a half vacation time over Christmas) hauled me into her office to discuss my "dismal" performance over the previous 2 months. My productivity (I'm a medical transcriptionist, so we really had to produce, produce, produce) was way down (in like the 57 minutes/average when I should have been around 80 minutes/average a night) and my quality had dropped from 97% accuracy to 89% accuracy. Huge cause for concern (lol). I had to re-explain to her everything that I had told her in November, and everything the doctor had told her in my sick note. She figured I would have been over it by then, even going so far as to tell me she would be quality checking my recent work and asked if I believed I had improved (I told her I had) because she wasn't convinced that the dip was caused by this event(!). It was all I could do to keep from snarking at her 2 weeks later when she e-mailed the results of the recent quality check and my minutes were up to 82/average and my accuracy was at 98%.

I was lucky though. Because I worked in a hospital, my coworkers understood what happened and that I was recovering. They knew recovery doesn't happen overnight. My parents, who lived 400 km away from me, didn't realize how badly I was affected until around Christmas when I was still having trouble moving about quickly. My mom was more upset that I refused to have her drive the 400 km the night my event took place (because it was storming and blowing snow through the mountain pass she'd have to drive through AND because my younger sister had had dental surgery that same day).

My advice for you regarding people who think you're 'raring' to go is to maybe have a small, 1 page sheet of what a pulmonary embolism is and how severe it can be. Most people not involved in health care and who have never experienced (either personally or through family) a PE can't understand how it can affect you.

Have you been scheduled to see a hematologist to have a genetic work-up done? Because my clot was a 'what the **** happened' case, they sent me to one for genetic testing to check for clotting disorders. I came back with nothing, which is why they figure it was the Yasmin I was on for only 28 days (yep, had only finished 1 package of pills before the clot happened).

Sorry for the insanely long post!
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Old 09-10-2012, 04:55 PM   #15
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Quote:
Originally Posted by Martine View Post
DollyR, very sorry to hear that you've had to go through this. Please take good care of yourself and follow medical advice closely.

I too suffered a major pulmonary embolism 2 years ago, most likely due to a combination of being bed-ridden after a surgery and being on birth control pill. It started as a deep vein thrombosis (I thought I had twisted my calf muscle and did not have it checked out) and one week later while doing the dishes, I felt a sharp pain in my chest, became short of breath and passed out. Thankfully my husband was there and I was rushed to the hospital where they diagnosed me. Both lungs were severely affected. I was discharged after 7 days and for the first week at home, had to inject myself with Lovenox to stabilize anti-cloth agents in my blood and then was put on warfarin for a year.

The first year, I can say that my energy level was not the same. I especially felt it when I went back to work or when I wanted/ had to walk for certain lengths of time. I am now feeling normal, but cannot go back on birth control. All I know is that if I have to undergo surgery or want to go on a long plane trip, I should inform my doctor ahead of time to be prepared. Funny thing is that I never panicked or felt any fear, I think I was overcompensating for my husband feeling so helpless. To this day, though logically I realize how serious the situation was, emotionally I've worked through it and am fine now.
Wow Martine....Thank God your husband was there! I figure my energy is going to be shot for awhile. I hope I can get back to the gym by January with just some treadmill walking. I wonder what they have to give you if you are planning on a long plane ride? The next one for me 100% is in June as I travel to the states every summer. It's a long way off and really today is all I am focused on. Thanks for the information. It really helps there are people out there who "get" what this is like.
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