What to expect when someone has bilateral pulmonary embolisms
July 29, 2020 6:11 AM Subscribe
A relative is in the hospital with bilateral pulmonary embolisms. Heart is fine and while there is more testing to be done, the doctors say that based on what they know so far the prognosis is good. But...so many questions.
It is not clear why this happened. My relative is negative for COVID, but I am not totally sold on that since it seems like if you wait too long to be tested you can turn up negative when you actually had it. So far, they haven't found cancer markers. My relative is normally pretty active. At 42, they haven't had any previous signs of clotting disorders.
Did this happen to you or a relative? What was the long-term treatment process like? Did they ever figure out a cause? Did they look for clotting disorders?
My relative lives by themselves far from me and of course there's COVID, so they'll be going home to be on their own.
My relative had several weeks of coughing that came and went, followed by a sudden drop in oxygen to 90. Oxygen rebounded on its own to 94 fairly quickly and has been improving a bit overnight. My relative is on IV heparin and the talk is of switching to oral meds, but we don't know a timeline on that.
Basically any information about your experience or any recommendations for more info would be great.
It is not clear why this happened. My relative is negative for COVID, but I am not totally sold on that since it seems like if you wait too long to be tested you can turn up negative when you actually had it. So far, they haven't found cancer markers. My relative is normally pretty active. At 42, they haven't had any previous signs of clotting disorders.
Did this happen to you or a relative? What was the long-term treatment process like? Did they ever figure out a cause? Did they look for clotting disorders?
My relative lives by themselves far from me and of course there's COVID, so they'll be going home to be on their own.
My relative had several weeks of coughing that came and went, followed by a sudden drop in oxygen to 90. Oxygen rebounded on its own to 94 fairly quickly and has been improving a bit overnight. My relative is on IV heparin and the talk is of switching to oral meds, but we don't know a timeline on that.
Basically any information about your experience or any recommendations for more info would be great.
I had DVT that led to PE a couple years ago. I was in my late 20s with no risk factors, other than taking hormonal birth control. Being on HBC, I knew DVT was a potential complication and that persistent calf pain was a potential sign. Had a CT scan while in the ER, which found the PE. Stayed overnight in the hospital for observation, but was able to go home after scheduling a follow up with my primary care doc and learning how to give myself heparin.
I guess I was lucky in that the experience of having DVT/PE was just annoying and the after affects have been the frustrating part. DVT/PE has a well-developed treatment protocol... in the initial treatment phase (breaking up the clots), the patient takes warfarin. They told me it could take a week to get to a therapeutic dose; warfarin dosage depends in part on the amount of vitamin K in your diet so you get a list of foods to watch and/or avoid. Blood draws are required to check how well your blood is clotting. Like owls above, I was put in touch with the anti-coagulation clinic who look at the results of blood draws and recommend what dose of warfarin to take. Lucky me, I found out I was allergic to warfarin, so I never got to a therapeutic dose before my doc switched me to Xarelto. The advantage to warfarin is it is generic (cheap) and well known. When you're on blood thinners you bleed more easily so injuries can lead more easily to an emergency. Warfarin has an antidote (injection they can give you at the hospital). Xarelto (in 2013) did not, I've heard it might now. Xarelto was also more expensive ($35 vs $5 per month with my insurance). But it targets a different part of the clotting cascade, so the dose is stable and no blood checks required. I took Xarelto for 6 months.
While we were working out the long term oral medication, I was also on Lovenox (heparin). Lovenox is an injection I had to give myself every 12 hours for about a week. It sucked, not gonna lie. I have an older AskMe from the second time I had to take it. I can give tips for what worked for me if you want, but really it was just something I had to power through until it could become routine. So about that second time... that's another complication from DVT/PE. I've had 2 surgeries since and each time the surgeon referred me to a hematologist, who prescribed 30 days of once-a-day Lovenox to prevent DVT during recovery. During one of the hematology visits, I was also checked for the various clotting conditions and I'm negative for everything.
Several years on, its really not something I think about in my daily life. The risk will never go away, though, and I now have a pre-condition that will follow me for life. My doctor said the greatest risk factor for having DVT/PE is having had a prior one. I have to be aware of medications (very few birth control options, can't take "Xa" style blood thinners with SSRIs, must refuse warfarin). Long plane or car rides can be risky, so I have to make sure I get up and walk. Don't start smoking.
I don't know if this all helps. Its a shitty experience, and its okay to acknowledge its shitty and to be upset for a little while. It kind of felt like my body had betrayed me. But its also not super rare, there are lots of other people who have dealt with it, every doctor I've seen has some experience with DVT patients, there are several well-established blood thinner meds, and newer medications that may be easier to take. Wishing you and your relative good health, and that they end up on the easier side of this condition with a quick recovery.
posted by Is It Over Yet? at 10:18 AM on July 29, 2020
I guess I was lucky in that the experience of having DVT/PE was just annoying and the after affects have been the frustrating part. DVT/PE has a well-developed treatment protocol... in the initial treatment phase (breaking up the clots), the patient takes warfarin. They told me it could take a week to get to a therapeutic dose; warfarin dosage depends in part on the amount of vitamin K in your diet so you get a list of foods to watch and/or avoid. Blood draws are required to check how well your blood is clotting. Like owls above, I was put in touch with the anti-coagulation clinic who look at the results of blood draws and recommend what dose of warfarin to take. Lucky me, I found out I was allergic to warfarin, so I never got to a therapeutic dose before my doc switched me to Xarelto. The advantage to warfarin is it is generic (cheap) and well known. When you're on blood thinners you bleed more easily so injuries can lead more easily to an emergency. Warfarin has an antidote (injection they can give you at the hospital). Xarelto (in 2013) did not, I've heard it might now. Xarelto was also more expensive ($35 vs $5 per month with my insurance). But it targets a different part of the clotting cascade, so the dose is stable and no blood checks required. I took Xarelto for 6 months.
While we were working out the long term oral medication, I was also on Lovenox (heparin). Lovenox is an injection I had to give myself every 12 hours for about a week. It sucked, not gonna lie. I have an older AskMe from the second time I had to take it. I can give tips for what worked for me if you want, but really it was just something I had to power through until it could become routine. So about that second time... that's another complication from DVT/PE. I've had 2 surgeries since and each time the surgeon referred me to a hematologist, who prescribed 30 days of once-a-day Lovenox to prevent DVT during recovery. During one of the hematology visits, I was also checked for the various clotting conditions and I'm negative for everything.
Several years on, its really not something I think about in my daily life. The risk will never go away, though, and I now have a pre-condition that will follow me for life. My doctor said the greatest risk factor for having DVT/PE is having had a prior one. I have to be aware of medications (very few birth control options, can't take "Xa" style blood thinners with SSRIs, must refuse warfarin). Long plane or car rides can be risky, so I have to make sure I get up and walk. Don't start smoking.
I don't know if this all helps. Its a shitty experience, and its okay to acknowledge its shitty and to be upset for a little while. It kind of felt like my body had betrayed me. But its also not super rare, there are lots of other people who have dealt with it, every doctor I've seen has some experience with DVT patients, there are several well-established blood thinner meds, and newer medications that may be easier to take. Wishing you and your relative good health, and that they end up on the easier side of this condition with a quick recovery.
posted by Is It Over Yet? at 10:18 AM on July 29, 2020
I don't have personal PE experience, but have had a couple of friends who have. One had acute shortness of breath suddenly, at age 55. She was quite obese, which is an additional risk factor, but she was a nonsmoker with no other known risk factors. After she was stabilized on warfarin she insisted on an extensive work-up by a hematologist for potential clotting disorders, and was diagnosed with a pretty rare disorder. She was switched to an oral anticoagulant, but with her clotting disorder documented, she'll have to stay on it for the rest of her life.
The clotting cascade is actually incredibly intricate, and there are many known clotting disorders of one or another of the many parts. Some are responsible for clots, others for additional bleeding risks. Von Willebrand's disease is one relatively common bleeding disorder you may have heard of, for example.
It is important to realize PE can be a cause of death, not just shortness of breath, and prevention is essential. Your relative's best advice is to follow up scrupulously with her doctor's advice, and to take her medication and have prescribed testing religiously.
posted by citygirl at 1:01 PM on July 29, 2020
The clotting cascade is actually incredibly intricate, and there are many known clotting disorders of one or another of the many parts. Some are responsible for clots, others for additional bleeding risks. Von Willebrand's disease is one relatively common bleeding disorder you may have heard of, for example.
It is important to realize PE can be a cause of death, not just shortness of breath, and prevention is essential. Your relative's best advice is to follow up scrupulously with her doctor's advice, and to take her medication and have prescribed testing religiously.
posted by citygirl at 1:01 PM on July 29, 2020
A relative of mine had a bilateral PE in their late 30s. They were overweight but didn't smoke or take birth control or have any other known risk factors. Their symptoms were coughing, trouble breathing and noticeable edema from their heart overexerting itself due to the lack of oxygen from their lungs. They were diagnosed via d-dimer test and sent to the ER, where they were admitted. They spent several days in the hospital for treatment and observation to make sure the clots were dissolving.
Things went well in the hospital and they were given a care regimen to follow at home. They took Lovenox (injectable heparin) to start the process and then transitioned to oral warfarin. Further testing diagnosed them with a clotting disorder and they're now on anti-coagulants for life.
Things are mostly back to normal for them several years later. They have mild lung scarring but no long-term heart dysfunction, they have good oxygen levels and their blood pressure is (and always was) very good despite being overweight. They're currently on warfarin, though they've tried Xarelto and (I believe) Eliquis.
Warfarin works well for them at this time, the cost is low and insurance doesn't give them shit about it like they did with Xarelto. It was always a pain to get the Xarelto prescription because the insurance company didn't like approving more than 15 pills at a time. On top of that hassle, the pharmacy often had to call insurance several times to get them to approve the refill. Xarelto also caused unprovoked anxiety as a side-effect, so my relative decided it was easier to go back to warfarin. No anxiety, no dealing with insurance buffoonery.
My relative may transition to a different drug as they get older if it's determined they're at risk of stroke since warfarin can increase the risk of hemorrhagic strokes more than the newer anti-coagulants.
They go to an anti-coagulation clinic every three months to get their INR checked to make sure it stays within an acceptable range (between 2 and 3). If it's too high or low, their warfarin dosage is adjusted to compensate. They have to take acetaminophen instead of ibuprofen or aspirin because of the bleed risk with NSAIDs and they have to avoid alcohol and limit food/drinks with vitamin K since it's an antidote to warfarin (newer drugs don't have this issue).
One of the most important things is to continue taking whichever anti-coagulation medication is prescribed for as long as directed. Warfarin, for example, has an extremely poor rate of patient adherence, meaning that many people take it incorrectly, infrequently or discontinue taking it without medical guidance. This can have extremely dangerous consequences (euphemistically called "poor patient health outcomes" in the literature I read). If your relative experiences side-effects with their medication, please have them discuss changing medications with their doctor(s) rather than discontinuing the medication on their own.
posted by i feel possessed at 3:18 AM on August 25, 2020
Things went well in the hospital and they were given a care regimen to follow at home. They took Lovenox (injectable heparin) to start the process and then transitioned to oral warfarin. Further testing diagnosed them with a clotting disorder and they're now on anti-coagulants for life.
Things are mostly back to normal for them several years later. They have mild lung scarring but no long-term heart dysfunction, they have good oxygen levels and their blood pressure is (and always was) very good despite being overweight. They're currently on warfarin, though they've tried Xarelto and (I believe) Eliquis.
Warfarin works well for them at this time, the cost is low and insurance doesn't give them shit about it like they did with Xarelto. It was always a pain to get the Xarelto prescription because the insurance company didn't like approving more than 15 pills at a time. On top of that hassle, the pharmacy often had to call insurance several times to get them to approve the refill. Xarelto also caused unprovoked anxiety as a side-effect, so my relative decided it was easier to go back to warfarin. No anxiety, no dealing with insurance buffoonery.
My relative may transition to a different drug as they get older if it's determined they're at risk of stroke since warfarin can increase the risk of hemorrhagic strokes more than the newer anti-coagulants.
They go to an anti-coagulation clinic every three months to get their INR checked to make sure it stays within an acceptable range (between 2 and 3). If it's too high or low, their warfarin dosage is adjusted to compensate. They have to take acetaminophen instead of ibuprofen or aspirin because of the bleed risk with NSAIDs and they have to avoid alcohol and limit food/drinks with vitamin K since it's an antidote to warfarin (newer drugs don't have this issue).
One of the most important things is to continue taking whichever anti-coagulation medication is prescribed for as long as directed. Warfarin, for example, has an extremely poor rate of patient adherence, meaning that many people take it incorrectly, infrequently or discontinue taking it without medical guidance. This can have extremely dangerous consequences (euphemistically called "poor patient health outcomes" in the literature I read). If your relative experiences side-effects with their medication, please have them discuss changing medications with their doctor(s) rather than discontinuing the medication on their own.
posted by i feel possessed at 3:18 AM on August 25, 2020
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I didn't have the coughing you describe, but after work one day I went grocery shopping and walked home with my bags. That evening I had what felt like a pulled muscle in my chest. It didn't hurt too bad, so I attributed it to carrying groceries and went to bed.
The next morning I woke up unable to breathe without chest pain, and it hurt to move or sit in most positions. Honestly, I was so panicked that I thought I was having a heart attack. Anyway, I went to the ER where they quickly ruled out heart issues. They ran a CT and some blood-work and came back with the PE diagnosis, a prescription for Lovenox (and injectable blood thinner), and sent me home with instructions to see my doctor ASAP. Apparently the "best practice" recommendation at the time was to treat PEs at home if possible.
I slept another day away but felt that I was getting worse so I went to a different ER that evening totally unable to breathe without gasping. They checked me out, confirmed the diagnosis, and admitted me since my blood oxygen wasn't stable. I stayed in the hospital 2-3 days while they kept me on oxygen, did some respiratory exercises, and worked on a plan for blood thinners. They were also looking for causes like cancer, injury, or just a genetic predisposition to clotting.
After I was discharged they left me with an oral Warfarin prescription and an appointment with the hospital's anti-coagulation clinic. That clinic was going to help me get on the right blood thinner dose on a longer-term basis. I wound up having blood-draws and meeting with that office every week at first, where we'd adjust my dosage based on whether I was in therapeutic range to prevent blood clots. As we fine-tuned the appointments became monthly, then stopped while I continued the medication. That's not to say that the process was fun. I had weekly blood draws, and was getting used to taking a very potent medicine. While we were getting things right I wound up on too high of a dose for a while and had some bleeding issues (sorry if TMI) that had me stop the medicine for a while and reset. All told, it was a scary and uncertain time.
I was also slowly recovering from the PE itself. I had a really hard time getting around or doing anything active for several months. Exhaustion came easily, I had new medicines to think about, and a lot of anxiety about the future. I even had nightmares where I wasn't able to breathe, which led me to looking in to meditation and counseling to help to put things in perspective (having a life-threatening health issue rattles your whole world, in my experience).
Anyway, narrative aside, in the end I'd say it took about 6 months to feel something like "normal" again. I was on the blood thinners for about a year. At that time I had a discussion with my doctors about continuing. Advice after a condition like this may be to stay on thinners for life. I didn't like that idea at all since it brought a ton of diet and lifestyle compromises. My doctors agreed and we made a plan to have me stop the thinners on a "wait and see" approach to see if I had other clotting-related issues in the near- to medium-term.
I think they agreed because I was relatively young at the time and we were unable to find any obvious cause for the whole episode. After many tests and theories, the best we could do for an answer was something like "we don't know, sometimes weird things happen." While that's a frustrating answer, over time I think I've come to prefer it to having a more definitive diagnosis that I know I'll be dealing with permanently.
These days it's back to normal aside from when the topic comes up like this. I hardly think about it on a day to day basis. I'm not on medication, never had further cause for concern. At this point several years later, it's just a scary memory.
Apologies for length here - hope this story was helpful in some way. It's the first time I've written it out in any amount of detail, so I hope it's also clear. Wishing you both well, with hopes for a speedy recovery.
posted by owls at 9:05 AM on July 29, 2020 [3 favorites]