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Pulmonary Embolism

Foggydog

Foggydog

macrumors 6502
Original poster
Nov 8, 2014
408
493
Left Coast
Good evening forum members;

First off to the mods, I seldom start a new thread so if this is in the wrong place, please feel free to move.

Last Wednesday, I started having a shortness of breath. On Thursday my breathing was so difficult that I started breathing quit hard after walking say 100 feet or so. It also took almost an hour to take a shower that morning at the truck stop. I was concerned, but being the male that I am, I just thought that I had eaten to much the day before and it wasn't digesting very quick. Boy was I wrong. By Friday morning, I couldn't walk but about 15 feet without having to gasp for air, and I felt like I was going to feint. I am a truck driver and I was luckily at our home city and our senior driver took me to the urgent care. Within one hour I couldn't walk at all without gasping for breath and the doctor called the ambulance to have me taken the 4 blocks to the ER. After the initial questions and simple checks, they brought in a portable x-ray and sent me for a CT scan. The result of that scan was that I had three clots on my lungs. Two on the left and one on the right. I should have died long before I even got to the urgent care. The doctor said that I was a very special patient (having three clots) and a very lucky one at that, and that my body compensated remarkably.

So, I am very interested in asking others here for any personal experience, and if anybody in these forums has taken the blood thinning drug XARELTO?
 
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Thank you. The doc says that the clots will take 4-6 month to dissolve completely. My breathing will be labored for some time as well.
 
Glad to hear you survived that experience. Just be careful now with any cuts as your body will more slowly clot any wound.
 
My wife recently had a clot in her lung. The hospital put her on XARELTO and she was released. Our family doctor immediately took her off the XARELTO and put her on Warfarin. He did not like the potential side effects with XARELTO. He believed the Warfarin was tried and true and safer than XARELTO.

Gary
 
My father had a DVT several years ago. Too much sitting during a roadtrip, leg swelled up, went to normal doctor who said "Go to ER now!" Went to the ER, developed shortness of breath when a part of the clot in his leg traveled to his lungs, spent a couple days in hospital and started on warfarin (Cumadin brand IIRC.) Then last year he passed out at home when a pulmonary embolism developed, took an ambulance ride to the ER, spent a couple days in ICU, then a couple more in a regular room. Started taking one of those new blood thinners that don't require regular blood tests - I don't recall of it's Xarelto or a different one, though. Hasn't had any issues since.
 
A bit over a year ago, I was given the gift of 6 stents in my heart so I can appreciate your situation. I can't offer insight into the meds (though I do take thinners) but I can offer you my unqualified support. Be strong, and heal Foggy.
 
Thanks for all the good replies. I am taking XARELTO, and so far no side effects. After only a week, my breathing is returning to almost normal, and I am finely getting off my duff and walking three times a day.
I elected to not go with Cumadin because as a long haul driver, getting home on an monthly basis, and having to have the drug changed according to my eating habits, or whatever made Xarelto the easy choice for me. Also, I got my first month for free, my second 20 days for free, and a discount card for xarelto that I never pay more than 5.00 for. So, Xarelto is going to be relativel inexpensive.
Heh, I do have one side effect so far; Loose bowels and is becoming a pain in the a$$ so to speak. but that is all.
 
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Foggydog, I have some experience with pulmonary embolisms.

You are at high risk for having a deep venous thrombosis (DVT, blood clot in the veins of the leg) due to your job. People that sit for a long period of time, such as truck drivers, or people on long airplane flights, have some slower venous blood flow which can lead to blood clots. The symptoms are not always obvious, but fairly common ones are swelling or pain in the calves.

Sometimes, a clot can break off, travel through your heart, and lodge in the pulmonary arteries in your lung. The symptoms of that are like you experienced, typically shortness of breath, sometimes a fast heart rate, or pain with breathing. Sometimes, the only symptom is sudden death.

The treatment for the blood clot itself is simply to allow time to pass. Your body will break it down and slowly unblock the blood vessel. It probably has already happened given that you are breathing better. You get put on anti-coagulation medications, like Xarelto or Coumadin (warfarin) to thin your blood and help keep you from forming new blood clots. Both of those medications work equally well. Coumadin has the disadvantage of having to check a lab level (INR) to see how well it's working, and may need adjustment. Xarelto is much newer, and does not require such lab test monitoring. Both have some potentially significant risks, generally regarding the potential for excessive bleeding. Because both essentially poison the ability of your blood to clot, if you have an injury, you are more likely to have more than typical bleeding. This may just be an extra large bruise, or it may be bleeding that's hard to stop in a cut. Most of the time this is not that big a deal, but sometimes people have significant brain bleeding after minor head trauma, or they can experience bleeding from their intestines. One benefit of Coumadin is that the effect of it can be rapidly reversed by giving plasma. Xarelto cannot be reversed. Obviously this is important if you are experiencing dangerous bleeding. The effect of Coumadin may also vary depending on your diet.

Pulmonary embolism is a serious thing, especially given your job. You should try to limit how long you sit, and take frequent breaks, maybe hourly to walk around and stretch. You should also flex and extend your ankles while you're driving. If you have another DVT or PE, your doc may consider putting you on Coumadin for life.
 
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Foggydog said:
Good evening forum members;

First off to the mods, I seldom start a new thread so if this is in the wrong place, please feel free to move.

Last Wednesday, I started having a shortness of breath. On Thursday my breathing was so difficult that I started breathing quit hard after walking say 100 feet or so. It also took almost an hour to take a shower that morning at the truck stop. I was concerned, but being the male that I am, I just thought that I had eaten to much the day before and it wasn't digesting very quick. Boy was I wrong. By Friday morning, I couldn't walk but about 15 feet without having to gasp for air, and I felt like I was going to feint. I am a truck driver and I was luckily at our home city and our senior driver took me to the urgent care. Within one hour I couldn't walk at all without gasping for breath and the doctor called the ambulance to have me taken the 4 blocks to the ER. After the initial questions and simple checks, they brought in a portable x-ray and sent me for a CT scan. The result of that scan was that I had three clots on my lungs. Two on the left and one on the right. I should have died long before I even got to the urgent care. The doctor said that I was a very special patient (having three clots) and a very lucky one at that, and that my body compensated remarkably.

So, I am very interested in asking others here for any personal experience, and if anybody in these forums has taken the blood thinning drug XARELTO?
Click to expand...
I'm glad you're recovering, that sounds like quite an ordeal.

First and foremost, it is important to identify the major causes leading up to the event. In this case it's pretty much a certainty that the fact that you're a long-haul truck driver was a major contributing factor. In most cases, a PE is caused by a deep vein thrombosis, starting in the legs which migrate to the lungs. This is because of the way our cardiovascular system is structured. Blood in the legs delivers oxygen to your leg muscles, so it needs to go back to the lungs to get re-oxygenated, which is why it often happens in the lungs even though it's caused by the legs.

The fact that you had THREE clots in your lungs is pretty stunning. I am sure your doctor will start testing for causes that alter blood chemistry to favor clotting, such as cancer (not to scare you, but there is an association). Another factor is inactivity/immobilization over long amounts of time, which is common in truckers. A third factor is obesity, which is also common in truckers, and old age.

If you're obese I would advise looking at your consumption of high fructose corn syrup. I'm not some kook who believes HFCS is the antichrist, but I do have a lot of education in biochemistry and the way the body handles (or doesn't handle) HFCS creates a perfect storm for obesity. It is difficult to actually overstate how bad HFCS really is. Basically your liver cannot metabolize HFCS in the same way that it metabolizes other carbohydrates, and it leads to MANY bad effects. HFCS causes fatty liver disease (yes, the same FLD that alcoholics deal with).

Most important is its effect on hunger. HFCS causes a double-whammy that makes it the perfect cause of obesity. First, it doesn't lower blood-plasma concentrations of the hormone ghrelin, so eating HFCS will not satiate hunger at all. Second, recent studies have shown HFCS causes spikes in the hypothalamus while most food lowers it, which is another likely area that causes HFCS to increase one's appetite.

It's entirely possible, though, that your PE has nothing to do with diet. Only your doctor can really diagnose what's going on. I wish you the best of luck, make sure to follow their advise as best you can.
 
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Thank you for your insight Rouxeny and AxoNuron.
My doctor and I came to a conclusion as to how I developed these clots. My newer truck has a seat bottom that put undue pressure on the back side of my right thigh. That in turn caused deep vain thrombosisis my right calf muscle.
From there, the pain was almost unbearable and I couldn't walk hardly at all. So, I massaged the muscle to relieve the pain causing the clot to break free. This happened twice, and I may have had one clot for quite a while since the ER doc thinks that one of the clots split into two. Within 3-4 days after the second DVT, is when my breathing became extremely labored. Even with that, my job is very bad for moving the blood, and now I'm walking 3 times daily. I am also doing calf raises twice daily. My ER doc, was completely amazed that I wasn't dead long before I arrived. I guess it wasn't my time to go, and now, I'm going to do all I can to get healthier and more active. Even driving a truck.
 
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Foggydog said:
So, I am very interested in asking others here for any personal experience, and if anybody in these forums has taken the blood thinning drug XARELTO?
Click to expand...

Hi Foggy Dog,

I am a PharmD... I spent some time in the past exclusively working in an Anti-Coag clinic at hospital prescribing anticoagulants and adjusting doses to patients. You've already received some good information here from other members, but I will tell you my thoughts. In my opinion, Xarelto is a very good drug and though I cannot comment specifically, but for such a case, seems like an entirely reasonable choice given the limited information. That said, always consult your doctor/pharmacist with any questions or concerns, not the internet.

The studies show that Xarelto is just as effective at Warfarin (generic name of Coumadin) in post PE treatment and that it causes less incidences of major bleeding (50% fewer events actually). Even though you have insurance, Xarelto in the big picture tends to be cheaper than Warfarin. While Warfarin pills are dirt cheap and Xarelto is over $300/month (w/o insurance), Warfarin requires frequent lab testing (very expensive) and dose adjustments (requiring you to purchase more pills). So looking at the copays of appointments and testing, Xarelto is probably the same price if not cheaper.

As you know, Xarelto does not affect vitamin K so you can eat what you want, when you want. The suggestion with Warfarin is if you eat vitamin K rich food (usually green, leafy vegetables), eat it on a consistent basis- so no salad binges. This may be hard- eating fast food on the road and perhaps better meals at home. Warfarin is very complicated to dose appropriately and the new anticoagulants that have been released are a complete revolution in therapy. Warfarin is the 2nd most dangerous drug in terms of prevalence of overdoses, second to opiates (which are abused, warfarin is obviously not)!

Xarelto is much more convenient with (conventionally) once a day dosing. As others have said, there is no drug to reverse its effects like Warfarin, BUT the therapeutic window is a bit wider, meaning it is a much safer drug comparatively speaking. Xarelto requires basically no adjustments in dosing and therefore fewer appointments, and fewer changes (it has a pretty standard/universal dosing regimen). As you pointed out, this is a major convenience factor for you given your trips.

Another benefit of Xarelto is that it works within a few hours, whereas Warfarin takes 5 days to take full effect. Consequently it's out of your body in about 2 days, whereas Warfarin takes about a week. This is important if you need surgery for any reason. It has fewer drug contraindications than Warfarin. Also, because Warfarin takes 5 days to reach full effect, you need additional heparin injections in the interim (inconvenient and costly).

There is some info out there to suggest higher incidence of gastrointestinal bleeding with Xeralto vs Warfarin. So be aware blood in stool- which has a black, tarry appearance if caused further up the GI tract. Always keep an eye out for signs of bruising/bleeding everywhere in/on your body. If you the proper dose and ask your doctor/pharmacist before taking other medications (and heed their advice), you're a lot less likely to have problems.

Be careful with what over-the-counter (NSAID's- ibuprofen/Advil, naproxen/Aleve, Aspirin, etc!), Herbals (St. John's Wart is a common issue), and other Prescriptions in conjunction with Xalerlto. Make no assumptions, always talk to a doctor or pharmacist before taking anything as they may have an impact. If you are not currently wearing a medical ID indicating you are taking it (along with your other meds), GET ONE. Some have serial numbers with a website/phone where you can update your medication as it changes. In an emergency, if physicians unaware you're on a blood thinner, there can be devastating consequences. Xarelto still has a lot of conflicts with other drugs, and the result could be severe in your case, if not managed appropriately.

Keep in mind despite the benefits I've mentioned of Xarelto over Warfarin, it is still a very powerful and dangerous medication.

I can't specifically comment without knowing your entire health history and labs, but I would be confident in your doctor and his decision making. You can always get a second opinion by consulting an additional physician. It seems to me your lifestyle/work would be a problem with maintaining the frequent lab testing with Warfarin. In addition to adhering closely to your medication, I hope you take whatever lifestyle changes are applicable to help prevent this from happening again. I'm happy to hear you are recovering well from what sounds like a severe pulmonary embolism. WOW... You are a lucky man!

All the best,
Ari

P.S. Make sure you know what to do if you miss a dose. The recommendation on this can change depending on the situation with this drug.

FYI, there is also a $0 Copay card out there if you have private insurance. (One of my coworkers used to call me the the coupon clipper of brand name prescriptions)
https://www.xarelto-us.com/carepath/savings-program
 
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Thank you A. Goldberg. Xarelto is the only drug I'm taking and I am hoping only for about six month or so. I discovered what caused the initial blood clots and I have made changes in my current seating in the truck to avoid another issue.
I am using an alarm on my phone to remind me daily to not miss my dose. Also, I will look into getting an I.D. bracelet just in case.
Thank you for such in depth information.
 
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Foggydog said:
Good evening forum members;

First off to the mods, I seldom start a new thread so if this is in the wrong place, please feel free to move.

Last Wednesday, I started having a shortness of breath. On Thursday my breathing was so difficult that I started breathing quit hard after walking say 100 feet or so. It also took almost an hour to take a shower that morning at the truck stop. I was concerned, but being the male that I am, I just thought that I had eaten to much the day before and it wasn't digesting very quick. Boy was I wrong. By Friday morning, I couldn't walk but about 15 feet without having to gasp for air, and I felt like I was going to feint. I am a truck driver and I was luckily at our home city and our senior driver took me to the urgent care. Within one hour I couldn't walk at all without gasping for breath and the doctor called the ambulance to have me taken the 4 blocks to the ER. After the initial questions and simple checks, they brought in a portable x-ray and sent me for a CT scan. The result of that scan was that I had three clots on my lungs. Two on the left and one on the right. I should have died long before I even got to the urgent care. The doctor said that I was a very special patient (having three clots) and a very lucky one at that, and that my body compensated remarkably.

So, I am very interested in asking others here for any personal experience, and if anybody in these forums has taken the blood thinning drug XARELTO?
Click to expand...

Damn man that is VERY scary!

Is this condition permanent or will the blood thinning drugs resolve the issue with just temperary short term use? Glad you made and for Canada this Monday it was our Thanksgiving so I'm sure you're thankful to survive.
 
OP - sorry to hear that you suffered this. I had a similar experience, (after a leg clot I got a golf ball sized clot on left lung, tennis ball sized major clot on right lung that basically took out the inferior lobe). I would not wish air hunger on my worst enemy (something that those of you who smoke I hope will consider). That was nearly 10 years ago, and I have been taking Warfarin ever since. The problem with Warfarin is getting the dose right. My INR (an index of blood-clotting time) dances all over the place, but it has not reached life-threatening levels. I have a blood test monitor (Coaguchek) that I can use at home to monitor my anticoagulation, and this has helped enormously (I am not connected with the company selling it BTW). We have decided to stay with Warfarin because it is easily reversed. I also have a fitness band that buzzes me if I sit too long and I now walk 10,000 steps a day on average (~3.5 mi).

Mostly now the medication and blood testing is just a PITA rather than anything dramatic. However, I developed chronic pain from the damaged area around the lung. So basically for the past 10 years it has felt like I have a bruised rib. No doubt you will avoid this, since it is very rare, and rest assured you'll be fine if you follow medical advice.

One more thing: I am alive because of animal research (look up the history of warfarin).
 
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Foggydog, I am a board certified hematologist (a.k.a. a blood clot specialist--hard to believe that such a thing exists, I know...). Just wanted to chime in and say a few things:

1) Three blood clots is not that uncommon--if your body can make one, it can make 2, 3, 10, whatever. I have seen peep who seem to have more blood clot than flowing blood in their bodies, and still survive.
2) A drug to reverse one of the newer blood thinners (Pradaxa) just came out today, and one which reverses Xarelto will be here fairly soon. Until then, for bleeders, we can always give blood.
3) Most importantly: Dr. Goldberg above totally nailed it. I agree with every single point he made. The debate about whether warfarin (Coumadin) or Xarelto is safer is really silly to those of us who deal with these drugs on a regular basis. If I ever get a clot, I will take Xarelto rather than warfarin without blinking an eye. I have seen lots of people die of warfarin complications. I have seen no people die of Xarelto complications. Nuff said. (But get yourself a bracelet, dude!)

Sincerely,

Lord MC

Standard disclaimer: My words above are NOT to be interpreted as medical advice, but rather as my opinion. For specific medical advice, see your doctor.
 
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Supa_fly,
The ER doc thought that I may be on Xarelto for life. The second doctor doesn't think so. But, it can still take about six months for the clots to dissolve. I am told that my body calcifies the clot and that is why it takes so long to dissolve.
If I am wrong, I'm sure that Dr. Goldberg or monochromicorn will chime in.

Also to Monochromicorn; I do plan on getting an ID bracelet as soon as I get off the road. The last thing I need is to bleed to death for a dumb reason.
 
Good morning dos Gris,
Thank you for your question. Blood thinners are not regulated by DOT like they do for insulin. The blood thinner will keep me from getting another clot, as well as enable the blood to enter the capilaries of my lung as the the clots break down.
Also, I am hoping to be off then in another 4-5 months.
 
Be safe out there. Wouldn't want to be a long way from help if you get short of breath again. All the best for a continued recovery.
 
My brother in law had similar symptoms and was diagnosed with a ton of clots in his body including one dangerously close to his heart. If he hadn't been nagged into getting checked by my sister he would probably have had a stroke or heart attack before very long. The hospital placed him on warfarin with all the warnings about temporary haemophilia whilst on it.

It does, indeed, take several months for most of the clots to dissolve but the upshot is my brother in law now feels much fitter than he has in years. It was just a gradual slowing down due to the reduction in lung capacity that the clots caused, which my brother in law attributed to getting older.
 
Good morning Catsman and Weckart:
I felt almost exactly the same about me feeling tired often. I just racked it up as not getting much exercise. Now as the clots thin , my breathing is getting stronger and when I walk, I don't get as short of breath as I did befoere.
 
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