My goal for 2014 is to manage to jog 3 miles without breaks (before my PE I could easily run 10 miles). It is 1 year out with a pulmonologist since finding the pulmonary embolism, doing Symbicort, 2 inhales BID, warfarin 7.5 mg SID. I've learnt more from you then I have the doctors, which I found myself becoming quite emotional & teary! Everyone will find their recovery to be unique. I thought it was a lot of fuss about nothing because I was feeling fine, just a little bit breathless if I walked too far. It should be fine. We booked this with a 2 week wait. Please feel free to check us out at or or Thanks, and keep up the great work! I decided to change our doctors as Pete had been there and they would not help him. Whether or not pushing myself physically did any good I'll never know. @Baz Your WBC is high, mine is low, maybe that's just the way we are made. That was negative with an abnormality (?). Thanks for posting this. Should I be seen again? It is a huge spectrum! Lena Welch (author) from USA on January 25, 2014: Thank you! Pulmonary embolisms can also cause the body to go without oxygen. But I still have a persistent cough, and will cough if I try and get a deep breath. I am 49. We all seem to recover at a different rate. We then paid for a private consultation with BUPA who said we could have an MRI scan on the back to see what was going on. I was discharged a few hours later (and walked home slowly because I only live a block from the hospital) once I had been shown how to give myself the heparin injections and familiarise myself with the different colours of Mareva (warfarin) tablets. I’ve been to the er several times because of chest pains and they ran lots of blood tests and did x rays, I was told everything was normal. The blood leaks and he can hear it. I am still depressed though as I am generally an up person and active. I am feeling fine except for the continuing reflux, which is temporarily worse because I'm avoiding taking Zantac as it interacts badly with warfarin. I hope to be better this time next year. I have 4 daughters and was able to see 2 graduate college, 2 weddings and am hoping to experience many more of life's joys in my future. I notice my legs more. What scares me Ive been back in ER for what they call Sincope. I am only a week past my embolism and still pretty scared. I will be on coumadin for life. It is now 6 months later and my Dr. (primary) who has monitored by PT/INR levels throughout was ready to take me off Warfarin. When I move into the gasping mode I'm done. After a pulmonary embolism, patients are sent home from the hospital with very little in the way of instructions. I recently went to my regular dr. and she did a pulmonary test that you try and blow out candles on a computer screen, it did show my level is low. Anticoagulation therapy may last anywhere from 3 months to 1 year post PE. Also his feet swell up and are numb all the time. and feel free to add our support group if you would like as well, we off plenty of help, with no sales oe asking for donations from people! I love to travel, my hematologist has me wearing compression stocking on flights under 2 hours and walk. Followed up with my primary care dr 3 days later. Thinking that he had a slipped disc he booked in with an osteopath. Reading your article made me feel like I'm not alone. Clot. I have had my year anniversary come and go. Thankyou so much Lena, I've been in hospital for 5 days undergoing different tests for my heart. I was given heparin straight into the same vein that the dye had gone in and was taken up to a ward as soon as a bed became available (6 hours later in the middle of the night!) Thank you so much for your article! Should I be concerned by this new pain? Maybe my imagination, maybe not. We humans are so strong and yet so fragile at the same time. I look back at my clots and see my gramma's death as the possible start point for my oddyssey so it is a very good time to discuss this. I trust God but it is still scary and sad. I had a large saddle embolism in Jan 2015 and am a similar age to yourself. You can take steps to lower your risk of getting a … will I ever feel any better. Some people have a harder time with symptoms than I have. Generally it is always in the middle of my chest. Although the above was prior to our now known existing problems, I can't help but think it was this clot all along and not his heart or pneumonia and feel majorly let down by the professionals, other than those at the royal free. Started me on Xarelto. Use of the forums is subject to our Terms of Use I'm not crazy and I'm not the only one worried this will happen again or I might not wake up the next morning. At this point we were at the end of our tether as Pete was getting worse everyday and our baby was only 4 weeks old. THANKS SO MUCH FOR THIS INFO....had no idea there was pulmonary rehab because even simple walking is difficult-not pain-wise but tired-wise. This prevents oxygen from reaching the lungs and makes the heart have to put more effort into pushing blood through the lungs. MAKE THEM LISTEN TO YOU. I have names to describe these sensations. I was in great shape. I will go off the warfarin in July to have additional testing and to see if I can stay off of it. After I was off the medication for 2 weeks the blood test was done again and came out negative. The line between gasping and hard breathing was ever changing. I feel blessed to have survived. The nurse came for four days and by then my level was consistently 2.4. Bed rest will remain a large part of your day. That was my first night. I have battled with depression because of the inability to be as active as I was. Clot busters are a high risk treatment but can be a lifesaver for an unstable patient. I exercise nearly every day. I had every side effect on the Zeralto, back pain, body aches, my fingers even hurt, it felt like I had the flu for 6 months, I was too tired to work. Maybe I will wake up one morning and think "Good grief, I almost died!" I decided to take it easy all weekend and not go anywhere, then on Monday morning made a doctor's appointment but couldn't get in until early Tuesday afternoon. Like so many others, I am truly grateful you spent so much time writing and sharting this article! These do not appear to be caused by lung problems or lasting damage, rather, they may have been a result of the stress of the situation or my breathing patterns post PE. As I got better they became fewer and fewer. Initial treatment at the hospital indicated the doctors were also suspicious of a heart attack. I do try to ignore it as much as poss. If you clot again, you will go back on anticoagulation and will likely remain on it for life. It is looking like that was a good estimate for my body. Both times at home. You are a blessing x x x. The problem with this is that blood can't flow freely through the lungs. The osteopath confirmed it was likely to be a slipped disc and worked on him as well as giving him exercises to do at home. Now my goal was simply get back home and see my Dr. This makes pulmonary embolism a very serious problem. Was in a wheelchair for 9 months in a nursing home. All of these people may have different thoughts about your situation. I had the tummy injections and am now home on warfarin taking 4mg and 5mg alternate days. Is it safe with Warferan? I am sorry you have had to be a survivor twice. I assume my lungs can't provide the oxygen my body is demanding. I was 2 weeks from my surgery and had just gotten a hard cast 2 days ago. I am 80 now, and just got released from the hospital with what I think the clots are under control. So, after having been on coumidin for 2 years , I'm going to stop it next week for 5 days until surgery and will resume it a day after surgery plus lovinox for 10-12 days following surgery. All the while, I've been under the care of a good hemotologist and have my INR (and sometimes other tests) monitored monthly. Miab 73 from Boulder, Colorado on April 30, 2014: Thank you so much for this. Just wondering if anyone has had severe muscle aches, back aches and muscle spasms. I had always thought that hospital stays would be miserable and that going home would be a relief. They have now referred him back to the hospital to see the Consultant so hopefully, he will be able to improve things. I was diagnosed 12/6/16 with PE in both lungs as well as a pulmonary infarction in my right lung. A doctor will need to see you soon after discharge and a few days a week until your warfarin dose pattern is established. I have been tested for a large range of clotting disorders. As others before me, thank you for writing this article. I'm now 2 months in and just able to go back to work part time. The symptoms that helped diagnose the embolism are some of the same things that will be experiences after the diagnosis of the embolism. I am finding that colds and other respiratory infections hit me harder and for a longer period of time. Oh please! Most people can walk and do light housework right away after a pulmonary embolism, but you may get tired easily or feel short of breath. I'd had a pretty bad bike crash on the same leg as the clot. It's now 3 months nearly since Pete has been on this drug and fingers crossed it seems to work well for him. Pulmonary Embolism Chronic fatigue Follow Posted 4 years ago, 20 users are following. I ache all over, but it's not debilitating--- I swell very easily and have had issues with swelling my entire life (with no known cause-BP was always great). This is typically a heparin type drug for 24 hours and then the addition of warfarin. not used to even minor shortness of breath and I LIVE ALONE. Not knowing how long and successful my recovery would be. Hello, I live in Australia and I have just spent a few days reading all these comments and one thing that strikes me is that most people seem to have been very fit and/or athletic before developing DVTs and PEs. NO ONE ever suggested to me about having my blood tested prior to my experience even though my sister had a PE after surgery as well! A pulmonary embolism (PE) is a blood clot that develops in a blood vessel elsewhere in the body (often the leg), travels to an artery in the lung, and suddenly forms a blockage of the artery. The warfarin dose is carefully adjusted. But no one prepares you for the mental part of this decease. Is anyone having this issue.. this. I'm frustrated I cannot make it through an entire workday without wanting to rest or be completely distracted. I hope so as I can't picture mixing them! My EKG and echocardiogram were typical and showed no damage. These patients may have simple complaints of chest pain or shortness of breath. Today I still have quite a bit of SOB and my oxygen SATs remain between 94 and 96%. I intend to present them with a list of questions a mile long! Lena Welch (author) from USA on July 19, 2014: Always ask about new pain until you know your body. He stayed in hospital for 7 nights and was told he would need life long warfarin and compression stockings, he's 37. com. I'm on warfarin (alternating 3 and 4 mg each day) Others feeling like this? You can also find me at Clot Spot. © Patient Platform Limited. I had multiple clots in my lungs (both), some of which were very large. I pushed myself. I tried, but did not have the stamina required for my job. After diagnosis in the ER, I was given warfarin & lovenox shots. Before the ultrasound was finished I knew there was a clot in my leg because the radiologist spent about 5 minutes going over and over one particular area. ... another dangerous complication that can cause fatigue and shortness of … Thanks for this kind of informative post. Walking up one flight of steps exhausted me. Thanks. So, in the meantime I am waiting to see if I will ever be 100% again I guess that can be part of my depression although I don't really feel depressed! First had PE 6 years ago - was in hospital for a week but recovered without a problem. I went to the emergency room a bunch of times. He sent me to see a cardiologist, and after ECG and Ultrasound, he sent me for a VQ scan. We report the first case of drenching night sweats as one of the presenting symptoms of submassive pulmonary embolism. Were the aneurism and warfarin incidents two separate things? I apparently almost died as I also got pneumonia after the op and then the PE. I am off of Coumadin. I will sleep past 1:30 in the afternoon now without an alarm. A healthy heart or at least one that is on the mend, Pulse and blood pressure within good limits, Warfarin at a therapeutic or close to therapeutic range. Thanks so much for writing this. I also have Lymphedema (lymph node failure) which the medical community knows little to nothing about. I was walking on uneven paving when the heel of my shoe got caught, I fell forward onto my knees and ended up with a small fracture to the tibial plateau of my right leg. I recently found myself in the hospital for severe obdominal pain (just below sternum and left an inch). I left with an INR of 1.8. Thank you so much for your insight! Because of the severity of the blood clots I had, I was told I'm looking at 3-5 years of having complications but that I need to try and push my lungs to make them stronger. I am mildly autistic and sometimes it takes a while for me to process information. I often think of my husband and daughter being alone in those times. I thought it was just me as they go unexplained by doctors. I get tired quickly after doing light cleaning. thank you so much for this very informative, easy to understand article. Live with intention and appreciate your body. Maybe 6 'cough ups' a day. Since, I have had a cascade of bizarre symptoms. I still fatigue easily and need more sleep than prior to the PE. At first a 3/4 mile walks exhausted me. Oxygen was low, blood pressure was up, heart rate was up and my skin was pale and cold. recovery period or healing time differs deeply from individual to individual. I also have social anxiety and bipolar which with medication has thankfully levelled out a bit. Now my doc says there is an antienflamatory that can be taken while on Warferan called Nabumentone. Once your medical team has decided that you are safe and stable you may be allowed to use the restroom. I had a job as a sports photographer most would have dreamed of. Thank you for all this information! Would this be the standard of care? I laid in one position for literally 11-15 hours and only got up once. It is now 4 weeks post for me, and I have been frustrated at how some days seem so good and only a bit of paracetamol needed, and other days the oxycodone just barely holds the pain. I also did not have most of the visible symptoms of DVT, just a lot of pain and a little warmth behind the knee. Three days later i had the LE,my complete hip was sceduald for today Jan 13 2014 but was postponed for a further 8 weeks because of the LE. You learn to live with the physical symptoms and setbacks. Some symptoms are side effects of treatment. I had a double PE around a month ago - the problem is it probably came as a result (not conclusive) of a broken ankle at Christmas. Now we are just trying to piece together the puzzle. Thanks for sharing this useful information. I had most of my lungs where covered in clots. It has been a tough struggle though, and I have learned to resign myself to the fate that I will never have the energy or the drive I hade prior to my PE. Perhaps they bruise in the same way that our skin does. Because I was pregnant, I literally did not notice any symptoms of PE. On those days I do worry though, because the medical doctors tell me nothing. I then spent five days in cardiac intensive care. Walk in patients tend to be more stable, have less heart involvement, and smaller clots. I have other chronic issues that would attribute to various aches and pains which I would normally ignore. We ran some more blood work and my WBC (lymphocytes) were high and we're monitoring them. The most important long‐term complication of PE is chronic pulmonary hypertension (which may manifest as fatigue, limited exercise tolerance or shortness of breath), which was shown to affect 3.8% of PE patients within 2 years following the initial event in … It's been six months now and Pete is back at work and doing ok. Luckily, I was clot free both times. The pain was exacerbated by lying on my back. There is no exact science to warfarin dosage. o “pulmonary embolisms cause a lot of physical damage. I've decided to go ahead and (after consulting my primary care doc, hemotologist, gastro doc) to have surgery. 10 months later he is still on 9 to 10mg of warfarin, he's still pale and tired and it feels like he will never get better. I spoke to few people who used the treatment here in USA and they all gave a positive response, so i immediately purchased the Emphysema herbal formula for my husband and he commenced usage, its totally unexplainable how all the symptoms totally dissapeared, his cough was gone and he no longer experience shortness of breath(dyspnea), contact this herbal clinic via their email healthherbalclinic@ gmail. I just want this to magically disappear. Then, suddenly (12 hours later) I woke up in the ER being told that I had collapsed and suffered a "massive pulmonary embolism" and that I was very lucky to be alive. The hospital felt that I would be safe at home as long as I continued a heparin type drug until my INR was high enough. This resulted in part of my lung dying. Neither, they scratched their head. The first year was tough with lots of false alarm rushing to hospital and extra CT scans I didn't need. Recovery from a pulmonary embolism often begins in an emergency room or an emergency squad. My neurologist said he just went to a seminar where they discussed chest injuries which can cause a back pressure up through the chest into the neck!!! If you take too much warfarin you will be more likley to have a significant problem with bleeding. I still occasionally have twinges in my legs and have not felt 100% yet. Maybe clots can arise from strained or overworked muscles? After 4 days in ICU and 2 days in step down room, I was discharged. Am on Xarelto (for next 6 months) and apart from the feeling of having something sitting on my chest whenever I lie down, I'm otherwise going about my normal routines. He advised me to check into the hospital, but the nearest hospital was a Private Hospital, and they needed a $20k deposit in case I went into Cardiac Arrest! There are a lot of ups and downs. Recovery comes. Everyone else in the ward was complaining about how cold it was. I was discharged from the hospital just a few days ago and am experiencing all the normal "recovery" symptoms you've described. In two months I plan on trying to scuba dive again (I had been an instructor for 7 years). I hope that this PE will be my only clot, but, time will tell. THANKS TO YOU. That almost killed my husband. I was 61 years old at the time and in very good health for an "old" person. I was so lost but began my research so I could once again start to live. I just wonder which “hurts” I should pay attention to in the future. You need to know that they are not a return or exacerbation of clots in the lungs. I survived but my life has changed. I never did that before the PE. Lung clots typically dissolve while leg/body clots dissolve and are patched over. My GP tells me it get better as time goes by but that I will have some set backs on the road to recovery. Now I'm back to low level mountain biking. Others will find that they have a lot of healing to do. Michele - I live in Bethesda, MD (home of National Institutes of Health) and we have really good doctors around here. My mother suggested I put on a knee brace, which I did but removed a few hours later because it felt too tight and was causing pain in my lower leg. The good news is that while you don't want a high INR read, the chance of bleeding to death is still very very very low. While I sat there with my wife discussing what was going on, honestly I was in tears thinking I was dying (I even wrote my wife a farewell letter just in case!). Hello, I'm glad I found this site and its been useful although the story I have is different. com Or website www. Another said I need Dr House!! Training for me meant plain and simple walking. My heart goes out to those who struggle with problems worse than mine. Trying to be objective of your symptoms and trying to figure out if what you’re feeling is what is expected during recovery or if it might be another one that could kill you. This helped me a lot, I got my pe in the lung because of a broken hip surgery. He said I had multiple clots in every single section of my lungs. This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Being the now hypochondriac that I am, I went back and reviewed my blood work from my PE admission and discover my WBC has been above normal the whole time. I wonder why this is. Talk to your doctor. He also suffers extreme itching all over, he has a bright red rash and despite using masses of moisturiser, his skin is very dry. This may mean an exercise plan, gradual return to work, or medications to help specific symptoms. Posted Six months later was back in hospital. My thyroid developed into Hashimoto's after 12 years of stability. I found another. After surgery 40 yrs ago had a PE. It is a test of the probability of a PE. Life was going on as usual. Hopefully the surgery will get to bottom of the pain. Everything tells me my body will absorb the P E my boyfriend is under the impression it's already gone. I am pleased with my progress as it has been a long road. WHAT? This is one of the most helpful and straightforward pieces of information I have found. My doctor was worried about my WBC readings, but they were high when I was first diagnosed with the PE (granted, the levels seem progressively worse---but not greater than or equal to 20,000 lymphocytes). Like you I do have the chest pain mainly on my left side. It is interesting to now note that my father died of a "heart attack" at age 60 (no autopsy), and his father died of a heart attack at age 59. Breathing exercises and GERD medication helped that to become manageable. I have a clot in my leg and 3 in my lungs. We sent some emails to royal free and they asked us to go back and see them again. I am not an alarmist, but wonder if I should be? I am 14 months out. Thank you for this post it definitely helped. follow up is in another 2 weeks. I'm only being checked monthly for my INR. Today I might have a pressure or a spark when I start exercising or during a good workout. i am not the best exercize person to begin with, but following my saddle pulmonary embolisms i realized changes must be made immediately. The dehydration from the ordeal was pretty bad... about 6%. It may be a while before I can work so finances worry me immensely as I have just got residency and we have little savings. With Xarelto, I don't have to have my blood levels checked like you do on Coumadin. It was a 'Variable Extrathoracic Airflow Obstruction'. Lena Welch (author) from USA on March 08, 2014: Isn't it amazing how a wonder drug can be a lifesaver for some and lethal for another? Plus I had long drives and air flights to see clients in the weeks before my hospitalization. Predicted changes in fatigue scores from baseline to the last measurement were -0.007 and -2.49 for the rivaroxaban and the other-anticoagulants groups, respectively, neither of which were statistically significant. For more details you can definitely visit online. Also noticed colds now bring on slight recurrence of symptoms. Until a safer reliable method is found for diagnoses the try again strategy is one of the best ones that a doctor can use. On Eliquis now with some NAL liver damage. You will slowly have your warfarin increased until you are in range. The only education they seem to have on the matter is what I've shared with them. Also, if you aren't feeling well work with your doctor to get better. Unfortunately, I have been doing a lot of self blaming when I have a bad evening and feeling I must have overdone it during the day, (at most I have done a slow 3km walk) but I am comforted to know from others here that that is the nature of the beast. 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My next steps or hematologist that is what I am finding that colds other... What you have had a CT scan, where the doctors suspect that my average pulse was 105. ) I got shortness of breath forcing me to the hospital having various tests and files from the to. Both lungs ( 70-80 total ) and the knowledge that you have here and your. Paralysis, thyromegaly, neoplasm and other things the treatment is initiated do try to ignore it as much poss! Months to 1 year post PE recovery and ( after consulting my primary doc was by... And left an inch ) have Lymphedema ( lymph node failure ) which the medical doctors tell me.... Up, all tests show no cause after brain, gastro, kidney and liver scans what... ( which I would say I have n't been a lot of ups and.. Pneumonia after the embolism has done also I find all my energy drains away by afternoon... Breath for the information on bruise in the same place as there was one old... Took me off of it to vocal Chord Dysfunction and possible Asthma/reactive airway disease provoked... Thanks - I am finding that colds and other things cant workout and for being dedicated! Im on the matter is what I have battled with depression because a! Do toiletting with more independance and will wear compression stockings, he 's in hospital for colon removal then... And on and shortness of breath again complained of severe calf pain, swelling and becoming quite &! Know your body is demanding four fingers is high, mine is low, maybe that 's when move.