It's been very helpful. But most of all, I cannot believe there are so many stories of people who have been through similar circumstances, AND you have taken the time and trouble to respond to people who have concerns and questions over a whole 4 years. This is the hard part. When I woke up I searched the pain and came up with back spasms! Very little time is spent telling the patient how to cope with a healing body, deal with pain, redevelop lost muscle mass, and regain endurance and lung capacity. Cocochanel2910. I'm now almost 48 years old and a male living in Washington, DC area. You can also look into pulmonary therapy for exercise tolerance rehabilitation with an exercise therapist, respiratory therapist, or physical therapist to help to regain lung function. You don’t want to be alarmed but how can you not when your heart is racing and you have chest pain. Am on warfarin and asprin plus many meds for CHF and antibiotics as a precaution that the removal of my colon did not have problems. I'm exhausted all of the time. Here are some things that you might experience once home: While these symptoms are common you should not dismiss them. He is 19 days post surgery and PE. The line between gasping and hard breathing was ever changing. Ask your doctor if you have restrictions but know that often exercise and sexual activity are safe as long as you listen to your body. Thank you for your article. I notice my legs more. I'm home again now but still alone and can't get out of my head long enough to "live with intention". I pushed myself. So far there are none. I’m going to demand it just to know, I have fear that while in the earliest staggers f recover6 I may have overdone i5 and thrown more clots . Will update everyone in a few weeks. I am still taking warfarin. recovery period or healing time differs deeply from individual to individual. Thankyou so much Lena, I've been in hospital for 5 days undergoing different tests for my heart. I've learned much. My oxygen was at 94%. I was scared but went home. I was hospitalized January 2011 with PEs in both lungs, & am working very closely now with my doc to figure out what is wrong with me. But I will also say that after a setback I felt better than I had before it. Impressive work. I am currently taking Lovenox injections and taking Coumadin trying to get my INR up to 2.25. The link below, dated Nov, 2014, is the only webpage I have found that tells us about the post PE issues and recovery statistics. These tests should include a doppler (ultrasound) of your legs (both calf and thigh areas) to check for additional clots and an echocardiogram to evaluate damage that may have been done to your heart. @Baz Your WBC is high, mine is low, maybe that's just the way we are made. Your old clots will be dissolved by enzymes in your body or they will be sealed off like a pearl. This means that you will be more fatigued. The patient will be started immediately on blood thinning medication. 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. Prayers for continued health for us all! Contrast dye has a lot of bad reactions in many people and the amount of radiation in a spiral CT is staggering. It got worse though a few days ago. The first year was tough with lots of false alarm rushing to hospital and extra CT scans I didn't need. I had a catheterization procedure where tPA was dripped directly into my lungs for two days. Sometime after being released from the hospital, it became apparent I was having serious issues with memory and fatigue. I have small cloths in both lungs and larger clots in my legs. Because I was pregnant, I literally did not notice any symptoms of PE. The blood leaks and he can hear it. Recently, a … I do not have any open sores, scrapes, or scratches. I went to the emergency room a bunch of times. At this hospital he was under a Vascualar team and Heamotologist. I stuck out my arm and immediately went back to sleep. I'm 3 months post saddle P.E. I'm frustrated I cannot make it through an entire workday without wanting to rest or be completely distracted. I did and unfortunately found the wrong pulmonary doc but after crying, he at least listened and ordered a VQ scan (lung perfusion scan). Thanks for publishing this article it did help in parts but i still have so many questions i am 22 i was 21 when i was digonesed with factor v i was under warfrin and tinzaparin injections for a year now im free of PE but im constantly thinking i have them any suggestions of what the doctor can test me for thanks im from the uk. On the other hand, some patients enter the hospital in an ambulance because they have collapsed. I knew, though, that I needed to be there—and that the ER doctors would likely save my life. I know after reading it and the many comments following that I am NOT alone. If you take too much warfarin you will be more likley to have a significant problem with bleeding. After 4 days in ICU and 2 days in step down room, I was discharged. No travel for the next couple months. 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. I trust God but it is still scary and sad. I never had the text book symptoms apart from the extreme breathlessness and fatigue even after just showering, I just put that down to my angina worsening, I never had sharp pains, even when breathing in and out, you know the symptoms. I have a clot in my leg and 3 in my lungs. Anyone else having this issue? It was an excellent read I too had a pe and suffer from asthma like symptoms and the cramp like pain you experienced. I'm seeing a hemotologist next month. I have names to describe these sensations. I bounce from friends to family couches. There are more days of feeling good than there are of feeling bad now. While I was glad to get home, the months following have been strenuous. After a pulmonary embolism the body spends a lot of energy on healing the heart and lungs, even if they were minimally effected. I'm 3 months post saddle P.E. I want my life back and will prevail. The radiologist really had to convince me to go to the nearest hospital and wasn't happy when I talked about going home first to get some things. weebly. http://www.ncbi.nlm.nih.gov/pubmed/25168205. Thank you!! That was my first night. I just want this to magically disappear. So I chose to go home (honestly, I didn't know how serious PE really was). Now I'm back to low level mountain biking. My wife refused to take me home so the Dr. called emergency and had me admitted. She decided to override what the Pulmonologist concluded and say it was my sedentary lifestyle. Extreme fatigue and challenges with the activities of daily life are normal…” o “recovery times vary greatly….only 9% of patients will feel fully recovered in less than a month, 68% will feel recovered by 2 years. The ability to walk means that you can do toiletting with more independance and will no longer have to use a bed pan. I've done ok lately but in the last few days have started having a heavy chest, can't focus, light headed and dizzy, depressed, disoriented etc etc Just not myself. INR is usually around 2.3 - 2.7. They then explained that they had found a massive blood clot in his inferior vena cava vein which extended into both legs in the illiac veins - right and left legs (this was foreign to us but knew it sounded bad). Our baby girl Ellie-Mae is now also 6 months old and loves her Daddy very much x, I have had PE and DVT i take warfarin the 5 daily but i also have a vena cava filter i have been on warfarin for about 3 yrs now i'm still have breathing problems i use to.be able to clean my home in 2 hrs now it take me almost 4 to 5 hrs because i have to stop to catch my breath or from pasting out because im dizzy and shakey. This resulted in part of my lung dying. I felt a very heavy weight pressing on chest. The title: The post-PE syndrome: a new concept for chronic complications of pulmonary embolism. Some people bounce right back and return to work quickly. But the hematologist that visited me in the hospital put me on Zeralto she said it would be easier no blood tests or special diet, and sent me home as I did not need to wait for the meds to reach the therapeutic level. I also have social anxiety and bipolar which with medication has thankfully levelled out a bit. This may mean an exercise plan, gradual return to work, or medications to help specific symptoms. Lena Welch (author) from USA on November 25, 2015: Interesting article. 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. Kind regards Linda. My wife and I shared a lot of tears over this. 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. I often think of my husband and daughter being alone in those times. Pete did have an accident when he was 14 when he fell down the side of a train which would explain this. I was recently diagnosed with DVT. Be your own advocate until you feel like you have gotten the best care that you can get. Thanks for posting this. You are an inspiration to who have had PE or may have it in the future. If this is all due to the PE, then you are absolutely right! My story is similar to many, more severe than some, and a relative walk in the park compared to others. The problem with this is that blood can't flow freely through the lungs. I have been on drugs for my Rheumatoid Arthritis for 10 years and I smoked (hoping I've quit for good this time) and I'm obese. Many days I would say I have all the energy that I had pre-embolism. In most cases, pulmonary embolism is caused by blood clots that travel to the lungs from the legs or, rarely, other parts of the body (deep vein thrombosis). It has been 2 years since my PE and my life changed. After a long bike ride (3 days, 100 km per day at 80 degrees) I got shortness of breath. Three of the most dangerous complications from heart and vascular diseases are heart attack, stroke and pulmonary embolism. But Covid has other unique attributes. I was 61 years old at the time and in very good health for an "old" person. 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