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.
Hello, I've been reading this forum for a while and would like to get opinions or insight from others and share my experiences.
I have been diagnosed with extensive acute bilateral PE a little over a month ago, I am in my 20s and was otherwise healthy before getting PE. I was in the hospital for a week getting warfarin (not sure the dosage) and lovenox. Ever since getting out the hospital my INR has been dropping mostly on 3-4mg and 3 weeks later it was at and around 1 and I have my next reading in a few days. I've been going to back to school and work part time and becoming more active around the house for a week now. My diet hasn't change, I only eat foods low in Vitamin-K, no other medications besides prescribed painkillers which I barely take. Unfortunately, the other medications cost too much for me so I really need warfarin to work. Also during this period I've notice I've been sluggish and getting anxious about getting another clot and dying. A doctor recently bumped me up to 5mg but I don't see how that's going to get my INR back to therapeutic levels without being put back on Lovenox. I am not sure I've been getting the best warfarin management from my PCP. I was curious if anyone had this experience on warfarin with unexplained low INR?
I also had some questions about the recovery process. My right lung has a lot of damage mostly the lower lobe with "moderate" infarction and clots found in my middle and upper lobe. I was told only a month on oxygen but a home test with my nurse actually showed I still cant walk for 2min without oxygen. I was curious how long people have been on oxygen? I am worried I'll have to be on it for a long time. I have improved on the incentive spironometer which I thought meant my lungs were improving but that doesn't seem to be the case. My nurse said she can't hear anything except sometimes faint crackling noises in my right lung.
Though I have not reached the 6 month period and unsure if I'll need to be on blood thinners forever, I was curious how living short term internationally (more than a month) is when you're on blood thinners? Do you take an INR reader with you or rely on doctors in another country?
Also, is it normal for people to feel relatively energetic some days and tired the next? I went to school part time (4hrs) for two days and felt decent then stayed home for two days where I felt pretty bad and tired. Then some days I am fine walking up stairs and other days I feel exhausted and out of breath when I do it. I also am having memory and speaking issues. Even when I'm calm, I can't speak properly and I notice I do not remember what people say sometimes in conversation and will ask the same question.
I am curious if anyone has any experiences with these as I can't find answers elsewhere and the doctors (understandably) can't give me a definitive answer. I think this would help as I'm basically dealing with this and trying to make sense of my life all by myself. I finally found a downside of moving away cross country by myself :/ And sorry for the long post!
I have been diagnosed with extensive acute bilateral PE a little over a month ago, I am in my 20s and was otherwise healthy before getting PE. I was in the hospital for a week getting warfarin (not sure the dosage) and lovenox. Ever since getting out the hospital my INR has been dropping mostly on 3-4mg and 3 weeks later it was at and around 1 and I have my next reading in a few days. I've been going to back to school and work part time and becoming more active around the house for a week now. My diet hasn't change, I only eat foods low in Vitamin-K, no other medications besides prescribed painkillers which I barely take. Unfortunately, the other medications cost too much for me so I really need warfarin to work. Also during this period I've notice I've been sluggish and getting anxious about getting another clot and dying. A doctor recently bumped me up to 5mg but I don't see how that's going to get my INR back to therapeutic levels without being put back on Lovenox. I am not sure I've been getting the best warfarin management from my PCP. I was curious if anyone had this experience on warfarin with unexplained low INR?
I also had some questions about the recovery process. My right lung has a lot of damage mostly the lower lobe with "moderate" infarction and clots found in my middle and upper lobe. I was told only a month on oxygen but a home test with my nurse actually showed I still cant walk for 2min without oxygen. I was curious how long people have been on oxygen? I am worried I'll have to be on it for a long time. I have improved on the incentive spironometer which I thought meant my lungs were improving but that doesn't seem to be the case. My nurse said she can't hear anything except sometimes faint crackling noises in my right lung.
Though I have not reached the 6 month period and unsure if I'll need to be on blood thinners forever, I was curious how living short term internationally (more than a month) is when you're on blood thinners? Do you take an INR reader with you or rely on doctors in another country?
Also, is it normal for people to feel relatively energetic some days and tired the next? I went to school part time (4hrs) for two days and felt decent then stayed home for two days where I felt pretty bad and tired. Then some days I am fine walking up stairs and other days I feel exhausted and out of breath when I do it. I also am having memory and speaking issues. Even when I'm calm, I can't speak properly and I notice I do not remember what people say sometimes in conversation and will ask the same question.
I am curious if anyone has any experiences with these as I can't find answers elsewhere and the doctors (understandably) can't give me a definitive answer. I think this would help as I'm basically dealing with this and trying to make sense of my life all by myself. I finally found a downside of moving away cross country by myself :/ And sorry for the long post!
Warfarin is a dicey drug. I've been on it for five years now (I am a lifer, since my PEs were my third clotting incident). They test frequently because lots of little things can affect your INR... if the INR didn't change so much, they wouldn't keep testing. The increase in activity since getting out of the hospital plus your young age probably means you need a higher dose than you had in the hospital. It can really take a long time for some people to get the correct dose dialed in, so you shouldn't feel like that by itself means you're getting subpar treatment from your doc.
For me, with warfarin, I've usually just eaten my regular diet, which stays pretty consistent on its own. I don't avoid K on purpose (unless my INR is really low or high), and I've found that my INR is generally pretty steady. Occasionally EVERYONE on warfarin will get unexplained swings low or high with their INRs. I usually take either 5.5 or 6 mg a day. I had a while where that dosage was spiking me up to around 3.5. Other times, the same dosage keeps me right at 1.9 or 2.0. Hard to say why, but my doc and I usually just tweak my dose so I'm back and range and go on with life. Don't stress the dose and diet too much, but do be religious about getting tests on time and making sure you hear back from your doctor on dose changes. It'll settle eventually, but it isn't always quick.
I can't say about oxygen, since I wasn't on it except in the hospital. But, yes, you'll have both good and bad days. You'll feel good one day and go do something like grocery shopping, and that'll wipe you out so much that you'll spend the next two days on the couch recovering. That's going to happen for a while, for sure, although the wild swings get less over time. For me, my last big bout of exhaustion was about 11 months after diagnosis, but I'd been seeing a lot of improvement over time.
The anxiety, sluggishness, memory problems and etc. can definitely be chalked up to the whole situation and the stress related to it. For me personally, the mental recovery was a lot harder than the physical recovery. I was terrified for months! I would definitely advise that you make a plan now to deal with the anxiety and fear, because it really can take over your life. For me, I fought it for a while, but finally wound up taking anti-anxiety meds and seeing a therapist. Both things helped me, but I know they aren't for everyone. Think about what helps you relax ... warm baths, journaling, meditation, etc. Figure out what works for you and then do it.
I haven't lived internationally, but I do have a home tester for my INR (generally more available for those of us who are lifers than those only on for a few months) and it goes with me when I travel. You'll have to check with your doc if you're looking at flying, as they may not advise that for a while yet.
Hang in there! You haven't mentioned anything yet that seems abnormal for PE recovery. Definitely read around on this group and run some searches for more info. And keep us posted on how you are doing!
Lovenox has NO effect on your INR or on how well the warfarin works. It is a medicine that takes effect immediately, so that is why they give it to you to get you anticoagulated while the warfarin takes effect and gets into range (a process that can take a while, as I mentioned). Some doctors will keep you on the lovenox until your INR is solidly into range, but others feel like you're covered if your INR is at least moving. Depends on the doc.
As far as your INR dropping, TNT is so correct about it taking awhile to level out. As soon as I was out of the hospital, my INR was too low every time it was checked. Finally towards the end of the second month I finally had a consistent therapeutic INR. I've been on the same dosage now ever since then.
Is there an anticoagulation clinic in your area? I find it really convenient.They do a finger-stick, and are able to go over the results with you and make any changes to your dosage.
I had home O2 also. I actually made a return trip to the ER a few days after being discharged. I just couldn't catch my breath. I felt like my heart was being stressed, and resting didn't help. I ended up on the telemetry unit for a couple of nights to make sure everything was alright with my heart, which thankfully it was, but based on the heart rate rise with exercise,( my O2 sats would be in the low 90's , but my pulse would jump up 20 to 30 beats a minute above baseline), I was sent home with O2. I really only needed it for a couple of weeks, but it really helped. I had bilateral infarcts , plueral effusions , and either pneumonia or a big inflammatory response to the damage. Once things started to heal, I started to make pretty good progress, but the first couple of months were really hard.
At the end of your post you mention recently moving. Do you have any friends in the area that can lend a hand? I'm single and live alone, but was fortunate that a friend stayed with me that first week out of the hospital, and I had other friends that helped out too.
I guess I just need to be more patient. I honestly thought recovery would faster especially with my breathing and heart rate. When I got out the hospital, I was told in few months I would be able to travel, exercise and attend festivals in the summer. Seems kind of misleading now, especially after reading people's stories on here. I am actually very scared to exercise, because I didn't get symptoms of PE until right after exercising.
And yes, I would also say mental recovery is the most difficult. I cry very easily now. Because of that I felt like it would be difficult to be in public for a while. In addition, being on oxygen is a constant visual reminder of my issues and I can't believe how insecure I was about wearing oxygen in public. Luckily I do know a few people that helped me even though it was inconvenient, they convinced me to leave the house to eat out and go shopping, after being in the house for 3 weeks straight, which helped me a ton to be comfortable to go out on my own.
I declined getting anti-depressants a month ago and by time I was paired with a therapist, I didn't think the cost was worth it since its situational sadness. Actually going back to school and doing what I love helped a lot where I don't feel sad at all. Though I still get sad when people ask specifics about what happened to me. I may end up seeing a campus therapist in the future.
And the closest anti-coagulation clinic is far away. I was lucky to have a home nurse come by and do the finger poke and send the results to my PCP. Now because I'm stable I've been discharged and have to drive myself to the doctor which is more convenient.
Thanks again