Recovering From A Pulmonary Embolism - What To Expect
82Radiologic studies of pulmonary embolisms
Click thumbnail to view full-size
Recovering from a pulmonary embolism: the beginning of a long road
Recovery from a pulmonary embolism often begins in an emergency room or an emergency squad. It begins when the patient has a diagnosis of pulmonary embolism and is given blood thinners to stop new clots from forming. If the patient enters under extreme duress it can be a very scary start to recovery. If the patient finally has an answer to mysterious symptoms the diagnosis may be a relief. With treatment the body can be given a chance to heal from pulmonary embolism without the threat of new clots.
July 18, 2008 I found myself in the emergency room of an area hospital. This was only the second time in my entire life that I was a patient in an ER. I knew though that I needed to be there and that the doctors and information that the ER had would likely save my life. It turned out that I had a very fatal condition known as a pulmonary embolism. What I didn't know was that the ER and the hospital stay were the easy parts of my diagnosis. I had always thought that hospital stays would be miserable and that going home would be a relief. While I was glad to get home, the months following have been strenuous.
While in the hospital I researched my diagnosis. I quickly found a lot of information about pulmonary embolisms. Page after page contained symptoms of a PE, the dangers of embolisms, and the treatments that were available. Other than treatment information very little information covered recovery. I did not know what to expect after my pulmonary embolism. I did not know how long recovery would take or how recovery would alter my life.
Very general information about recovery
- Everyone will find their recovery to be unique. Like many disorders and diseases pulmonary embolisms can be of differing severities. There are people who return to work in a few days as well as people who die. It is a huge spectrum!
- There are a lot of ups and downs. Symptoms of the embolism will come and go for a long time after the embolism is found and treatment is initiated. It is not uncommon for someone to go 3 months without any problems and then find themselves with pain or shortness of breath again.
- The symptoms that helped diagnose the embolism are some of the same things that will be experiences after the diagnosis of the embolism.
- Symptoms should be checked out by a doctor. You need to know that they are not a return or exacerbation of clots in the lungs. Also, some symptoms interfere with living or are dangerous. These need to be treated so you can go back to living!
- Some symptoms are side effects of treatment.
- After a pulmonary embolism the body spends a lot of energy on healing the heart and lungs. This means that you will be more fatigued. You also will get sick easier, stay sick longer, and find that you get more sick feeling when you are sick.
Why is a pulmonary embolism so serious? See this video using household items.
What is a pulmonary embolism
A pulmonary embolism is when a blood clot lodges itself in the lung or lungs. The problem with this is that blood can't flow freely through the lungs. This prevents oxygen from reaching the lungs and makes the heart have to put more effort into pushing blood through the lungs. This makes pulmonary embolism a very serious problem. Many people with pulmonary embolisms never get a diagnosis until they are being autopsied. Sudden collapse and death are often attributed to an embolism. Death can occur even without any warning symptoms. The blood clot breaks off from someplace and blocks the lungs. If you are diagnosed with a PE you are one of the lucky ones. Pulmonary embolism recovery can be long if you have had substantial damage to your lungs or heart.
A medical lecture about why a PE may happen and what it can do to the body
Immediate and/or urgent care for pulmonary embolism
Immediate care will vary greatly. Patients with pulmonary embolisms may enter the hospital on their own volition. Walk in patients tend to be more stable, have less heart involvement, and smaller clots. These patients may have simple complaints of chest pain or shortness of breath. On the other hand, some patients enter the hospital in an ambulance because they have collapsed. Some patients die before they even know that they have a PE.
If the patient is highly unstable, doctors will run tests to determine the cause. As soon as the PE is discovered doctors may decide to use clot busters to clear the clots so that the patient can get oxygen back into the blood. Clot busters are a high risk treatment but can be a lifesaver for an unstable patient.
Those who are not unstable will have calmer diagnosis and treatment. The hospital will take vitals and possibly do any of the following: EKG, chest x ray, D-dimer, other blood work, contrast spiral CT, ultrasound, oxygen measurements. Once the PE is found, the patient will likely be placed on bed rest until the legs can be scanned to check for clots that might migrate. The patient will be started immediately on blood thinning medication. This is typically a heparin type drug for 24 hours and then the addition of warfarin.
When I entered the ER my doctor had called ahead of time. They did the EKG, blood work, and chest x ray. My oxygen was at 94%. My resting pulse was at 125. My primary doc was consulted by phone and a spiral CT scan with contrast dye was ordered. This scan showed multiple, large clots. Immediately I was hooked up to heparin and put on bed rest. That evening I was placed in the step down unit. Intensive care had no beds and I was stable enough to be in the step down. I remember being woken around 4 am by a lab guy looking for blood. I stuck out my arm and immediately went back to sleep. 30 minutes or so later the nurse came and shut down the heparin drip for an hour as I was too high. Another hour later she was back and it was placed back on. Each time someone was in I had to get a temperature and blood pressure reading. That was my first night
Medical lecture about PE treatment
The first few days in the hospital after a pulmonary embolism
The first few days after your pulmonary embolism will vary based on how severe your embolism is and what damage the embolism has done. All pulmonary embolism patients should expect to have additional tests. 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. If you have never been tested for clotting diseases and conditions in the past, I highly suggest that you insist on a hematologist to run a battery of blood work to determine if you have any clotting conditions. Some of the blood work will need to be done after your clots have healed and you are off of blood thinners because blood thinners will skew your body's chemistry and invalidate some types of blood tests. Any DNA tests for clotting conditions will be able to be done at this time as DNA is not affected by blood thinners.
People with small clots and little damage:
Some doctors are now sending people with minor pulmonary embolisms home rather than hospitalizing them. This group will receive an injectable low molecular weight heparin until the Coumadin is at a safe, therapeutic level. Those with minor embolisms may also remain in the hospital on heparin until the Coumadin is therapeutic. Either way, those with minor embolisms may be lucky enough to return to work a week or so after discharge.
Once you are safe and stable
Once your medical team has decided that you are safe and stable you may be allowed to use the restroom. Doctors need to make absolutely sure that there are no additional clots that may dislodge from walking before you will be allowed up. The leg ultrasounds mentioned above will provide solid evidence on the risk of more clots lodging in your lungs. This will give you a lot more freedom and will be a large step in your pulmonary embolism recovery. The ability to walk means that you can do toiletting with more independance and will no longer have to use a bed pan. Bed rest will remain a large part of your day. When you will be encouraged to walk the unit is based on what residual heart damage is found and how your body is faring. If your blood oxygen and heart rate look good you will begin to be allowed on supervised walks of the unit. Walking will help you prepare for going home. Walking will also help to prevent new clots.
When you may be leaving the hospital soon / when warfarin is at a therapeutic INR
As the days pass you will begin to feel like you are living with vampires. Blood work is checked day and night to keep your heparin dose at the correct, safe level and to see how your warfarin treatment is progressing. The warfarin dose is carefully adjusted. The goals a patient must reach in order to be discharged are:
- No residual dangerous clots in the veins
- A healthy heart or at least one that is on the mend
- Good oxygen saturation in the blood
- Pulse and blood pressure within good limits
- Strong vital signs
- No signs of internal bleeding
- No significant worsening of symptoms
- At lest 72 hours on warfarin and heparin
- Warfarin at a therapeutic or close to therapeutic range
The big question that many people have is "what does therapeutic range mean?" Warfarin has to be at a fairly precise level in order to work well. If you take too much warfarin you will be more likley to have a significant problem with bleeding. If you take too little warfarin you are likely to develop blood clots. For many people this will mean an INR between 2.0-3.0. INR stands for "International Normalized Ratio". INR measures how long it takes your blood to begin to clot. There is no exact science to warfarin dosage. You will slowly have your warfarin increased until you are in range.
Your body may need a higher dose of warfarin than someone else. In these cases the patient will stay in the hospital for a longer period of time. My total stay was 11 days. I left with an INR of 1.8. I was given low molecular weight heparin to self inject until my primary care doctor could get me to therapeutic range. My vitals were fine and I was safe. 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.
|
100 Q&A About Deep Vein Thrombosis and Pulmonary Embolism (100 Questions & Answers about . . .)
Price: $11.09
List Price: $18.95 |
|
Understanding DVT - Deep Vein Thrombosis (Home Use)
Price: $24.95
List Price: $24.95 |
|
Thrombosis: Everything You Need to Know (Your Personal Health)
Price: $0.01
List Price: $16.95 |
|
To Full Term: A Mother's Triumph Over Miscarriage
Price: $0.50
List Price: $19.00 |
|
Positive Options for Antiphospholipid Syndrome (APS): Self-Help and Treatment
Price: $7.49
List Price: $12.95 |
Coming home
You will need to have an appointment set up with your primary care physician or hematologist that is monitoring your case. A doctor will need to see you soon after discharge and a few days a week until your warfarin dose pattern is established. For the first few weeks you may be going once a week or so.
Some people bounce right back and return to work quickly. Others will find that they have a lot of healing to do. Here are some things that you might experience once home:
- Fatigue
- Chest pain
- Fast heart rate
- Breathing difficulties
- Anxiety
- Depression
- Symptoms that remind you of your PE
While these symptoms are common you should not dismiss them. Talk to your doctor. If any of them are severe, or you are not sure whether they resemble a clot or recovery, you should go to the emergency room and tell them that you had a recent PE. They can test you to see if there are any new clots that have shown up. Also, if you aren't feeling well work with your doctor to get better. This may mean an exercise plan, gradual return to work, or medications to help specific symptoms. Anti anxiety medication as well as asthma medication may help you depending on your circumstances. Be your own advocate until you feel like you have gotten the best care that you can get.
I recommend getting a copy or your tests and files from the hospital so that you have them as a baseline for the future.
What restrictions will I have while recovering from a pulmonary embolism?
Most people report that there are no restrictions once they are home. 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. If you are out of breath or your heart is racing, take a break or slow down the intensity of your activity. Exercise may help prevent further clots so don't give up on it.
How long will recovery take from a pulmonary embolism?
Recovery will depend on the severity of the PE and any possible heart damage. I was out of work for around 3 months. I was told that a year out from my hospitalization I should feel a lot better. It is looking like that was a good estimate for my body. I will sleep past 1:30 in the afternoon now without an alarm. I never did that before the PE. I also have an asthma like condition. The breathing problems from that cause coughing, mild shortness of breath, chest pain, and fast heart rate. The irony is that the pulmonologist can't "see" this condition. Luckily my doctor and the ER doctor have found it and know how to treat it. In some ways though it makes me sad. I wonder if I will have those symptoms forever as a legacy from the embolism. The great thing is, the fatigue is getting better every day. This is June. July was my hospital admission. There have been a lot of ups and downs. I have been to the ER two times for shortness of breath. Luckily, I was clot free both times. I am finding that colds and other respiratory infections hit me harder and for a longer period of time. My heart rate is still higher than what it used to be, but, it is down from where it was last July. I still feel chest pain on some days. I am still taking warfarin. I will go off the warfarin in July to have additional testing and to see if I can stay off of it. I am pleased with my progress as it has been a long road. Some people have a harder time with symptoms than I have. I am grateful that I haven't had excruciating chest pains or extreme shortness of breath.
|
Medical ID Bracelet
Price: $29.00
|
|
Fashion Alert Medical Jewelry T-14 Latex Allergy Tag
Price: $8.97
|
|
Macx USB Medical ID Bracelet
Price: $34.99
List Price: $34.99 |
|
Diabetic Medical Id Jewelry Necklace
Price: $5.20
List Price: $6.00 |
|
8" Figaro 150 Medical Alert ID Bracelet
Price: $44.95
List Price: $74.99 |
Post pulmonary embolism expectations
Anticoagulation therapy may last anywhere from 3 months to 1 year post PE. This therapy prevents new clots from forming. Your old clots will be dissolved by enzymes in your body or they will be sealed off like a pearl. Mine are all gone. Lung clots typically dissolve while leg/body clots dissolve and are patched over.
You can come off of anticoagulation if there are no serious clotting conditions and if you haven't re-clotted while on anticoagulation. If you clot again, you will go back on anticoagulation and will likely remain on it for life.
Pregnancy is still feasible. Look for a OBGYN that specializes in high risk pregnancy and find a good hematologist.
While traveling, take precautions to prevent clots. Drink water or electrolytic beverages, move around the cabin of the plane, take frequent rest stops in a car, consider prophylactic low molecular weight heparin injections, and possibly wear gradient compression stockings. Above all talk to your doctor.
If you are bedridden, sick, or in surgery make sure that a doctor knows of your history and take steps to prevent clots before they happen.
All in all, life won't change too much. Live with intention and appreciate your body. It survived a potentially lethal assault.
A year later, how life may look
I have had my year anniversary come and go. I am no longer as tired as I used to be. Many days I would say I have all the energy that I had pre-embolism. I am off of Coumadin. I started feeling a lot better when I stopped it. I have a cough off and on and shortness of breath. These have been traced to Vocal Chord Dysfunction and possible Asthma/reactive airway disease. 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 have been tested for a large range of clotting disorders. I only have heterozygous Factor V Leiden. I drink more water, take 15 minute rest breaks when driving or traveling, and leave my desk for breaks at work. I notice my legs more. I wonder if they have clots and find myself concerned that the twinge of pain is something more. So far, it hasn't been. I have chosen to see my hematologist once a year rather than dropping him entirely. When I wish to have a child he will be an integral part of my medical team. So, there it is. I hope that this PE will be my only clot, but, time will tell. Recovery comes. A year makes all the difference in the world!
News about pulmonary embolism and pulmonary embolism recovery
- Chemotherapy with cetuximab yields high response rates compared with historical controls, and leads to significantly ...Lancet5 hours ago
Neoadjuvant chemotherapy for unresectable colorectal liver metastases can downsize tumours for curative resection. We assessed the effectiveness of cetuximab combined with chemotherapy in this setting.
- Schwenke family fundraiser today at Baja FreshCanyons, Coto, Ladera & RSM News9 hours ago
RANCHO SANTA MARGARITA - Rancho Santa Margarita Little League is hosting a fundraiser today from 10:30 a.m. to 9:30 p.m. at Baja Fresh in Rancho Santa Margarita to benefit the Schwenke family. Matt Schwenke, a Little League coach, died earlier this...
- Cook wins finale, Roberts takes points titlePark Hills Daily Journal13 hours ago
SONOMA, Calif. (AP) — John Cook had a tough time staying focused Sunday in the final round of the Charles Schwab Cup Championships. Loren Roberts had no such problem.
Sites about pulmonary embolism recovery:
- eMed TV: Recovery from Pulmonary Embolism
This is the one site I can find on pulmonary embolism recovery. It mainly focuses on taking medications and having regular blood tests.
Support groups for recovering from a pulmonary embolism:
- Pulmonary Embolism Recovery Support Group - DailyStrength
This is a great online social site/bulletin board where you can share your experiences from your pulmonary embolism recovery.
PrintShare it! — Rate it: up down flag this hub
Comments
You are welcome! There ins't much written out there on receovery. Also, some Docs blow it off. I have coughing problems which were written off by my allergist and pulmonologist as not there and me over reacting. My family doc gave me a steroid inhaler and it has improved my quality of life a trillion times over! I haven't had the crushing pain that some have, but, I still get pain. It is just like a stomach stich/cramp but not as strong and can be anywhere from my sternum, to under my left arm, to under my breast. I now know it is a warning that the coughing and contriction will be kicking up. I suggest the support group at www.dailystrength.com. If you have any questions feel free to find me through the email link here.
Yes! Thank you very much for writing this. It has been a long and hard 4 months since my PE and 3 surgeries and two filters later, I am struggling to see an end to this chaotic mess. I am 28 years old and I feel the research and doctors have a harder time dealing with my complaints and questions because most of them are due to my age, wanting answers and results now. I want to get back to my normal life, especially doing triathlons again, or at least being able to walk at a normal speed, not 2.5mph....
It is good to hear more of an estimate for how long recovery may take. With PE's being the third most common cause of death it is amazing how little recovery information is available.
Stephanie, hang in there! It does get better. I know that some people on Daily Strength returned to marathon running. As physical activities are important to you, I reccomend looking into pulmonary rehabilitation. In my are we have a excercise facility that focusses on medical rehab/training. I know that many physical therapy places are able to do this as well. They look at where you are now and set medical and physical goals and then have a trainer or PT work with you to meet those goals. Places that do cardiac rehab would be a good place to look. Also, yoga may be gentle enough for you now. Yoga is good as you can work on breathing as that is a central piece of yoga.
Thank you for writing this - I am also finding it hard to get any answers from doctors about recovery time - I find the pain medicine helps and also helps me not to be constantly reminded of the problem I have. I am wary of becoming dependent on the medicine though.
I am not sure how long it takes for the body to accustom itself to the pain medication. I know that it can, and, you can have withdrawal when coming of of it. I use my Vicodin pretty sporadically. It is for pain that Tylenol doesn't touch. My chest pains, while disturbing, don't need pain killer. It has been over a year though and I still have them. The pain tells me when my breathing will be bad. Best wishes!
I was diagnosed with PE 5 days ago, spent 3 days in hospital and like you, was happy to come home. I am trying not to hyper-aware of every little symptom, but without much info on recovery it is hard to know whether something is a new symptom or part of the recovery process. I get daily headaches (new), back pain and nausea. I still have trouble taking a deep breath, Xanax helps some. I just want to get back to my normal life!! Thanks for compiling all this info!
Ugh on the daily headaches. I reccomend going to www.mymigraineconnection.com or www.headachedrugs.com they are the 2 most useful sites. (I get chronic near daily headaches and have for years!) I would wonder if the anticoagulants may be worsening the headaches? That depends on if you had them before the hospital. Also, back pain, if it is upper back can be connected to that as well. The breathing will get better as time passes. I have lots of headache info if you need it.
Thank you for the information!!! I am still dealing with the mental fallout from realizing how bad I was and the posts here will give me peace of mind that I have been looking for. It's so hard to have others relate to how I feel. Thank you so much!
Thanks for the offer on headache info --- I want to discuss with pulmonologist at appt tomorrow. I used to get migraines and these are not the same. I will say that even since my previous post, I have noticed improvement in breathing -- Thank God for Xanax. Once the struggling for air starts, you tend to start hyperventilating - just .5 mg Xanax seems to calm it all down. I am able to walk a mile each morning and am planning to return to work tomorrow if my INR is still good.
RLee, I think I didn't realize the miracle of living until this year when I looked at my CT and looked at what I think I know now about reading the CT. I see how much was occluded and am blown away. I think I am stuck with survivors guilt. I feel lost these days, like I was chosen for something but I have no clue what it is.
Peggy-
That is great! I am happy you are better! Try some yoga or meditation breathing CDs. I find they help. I have used free ones on iTunes. Search the podcasts for meditation. There are at least 2 free meditation podcasts there. If you need any more tips on headaches use the email link on this site and I will share. I know the asthma meds I use now cause massive headaches that don't go away. Thanks to the blood clots for that... If your headaches seem to be muscular or center in a pattern down your head, down your neck, over your shoulder I can recommend some self massage that you can use if your doctor doesn't think it will dislodge any more clots.
Reading this website was extremely beneficial. My mom broke her ankle in the beginning of August severely enough that it required surgery with 6 screws in a plate. 2 and a half weeks later, she was hospitalized with a pulmonary embolism and which was caused by the blood clot in her leg ( they discovered that this large clot was from her ankle to her hip!!) She was in the hospital for 11 days and is now home. While there she contracted C. difficile so she was ill on top of all this. She is still working on using her leg ( she is allowed a walking boot) with her walker but she still gets winded and is not able to do much during the day. I often worry that I am never going to have my mom back the way she used to be (extremely active and always busy) but now I see that recovery won't happen over night. Thank you for the article and for letting me share my story.
Thank you so much for the article. After a PE, the source was in my leg, I am trying to adjust to everyday living. I was not made aware that I would still have the lung pain and shortness of breath. I am trying not to panic when this happens but to also be cautious. Your story and others comments have greatly helped me.
Stacey - I am glad that your mom has made it through all of that. It sounds like it has been a rough journey. Broken bones seem to be a cause of clots. Clots also tend to form any time we are inactive. If she was that active and then laid up for the ankle I can see that would be a large contribution. She may find some lingering problems with the leg clot. I understand that compression stockings and elevation can help with that. I am traveling again and doing stuff that a year ago I couldn't do. Start with little thing - a shopping trip to a little store you have wondered about that only takes 30 minutes or so or running basic errands. It may be beneficial to get a heart rate monitor from Polar so that you guys can see progress in the endurance that she has.
HI all
I have to admit i have found your blog to be really helpful, i am 25 years old and was dianosed with a PE 5 weeks ago, i am still breathless and in pain, i am depserate to get back to work but doctors dont feel it is safe at the moment. I feel uselss and wish i could do more.
Is there any tips anything i need to look out for?
Thank you for this article. It's been almost two years since I was diagnosed with bilateral PE. I still hurt in my right lung. Sometimes it's worse than others. Saying that pregnancy is still possible brought me to tears. While I have two children already, I would like to have one more. My backwoods family doctor simply told me to give it up and forget about it. My pulmonologist asked me if I was going to have more, which did nothing but cause confusion. Thank you for making me realize it's time to change doctors and maybe there is a chance I can have another baby.
Sharon, hang in there! Find a way to chart your progress. Maybe a heart rate monitor watch, pedometer, or just a journal. Make notes of the good so you can see it and se progress.
Lucy,
I would make sure you know why the Docs don't want you back yet. I was out for 3 months but Dr would have been fine with me being back once my Coumadin was stable. I was way too tired though and was sleeping all day many days. Is there any work you can do at home? Maybe you can find a teacher or another person who could use some paperwork, sorting, or other at home easy activities to keep you busy and have you helping out. Listen to your body and journal the improvements so you can see them. You also might try doing grocery shopping in a place with the electric carts. It would help you do something. If you know an Occupational Therapist they also may help you find safe things to do or modify activities so that they are safe.
BeccaHubbardWoods, Look at my page on FVL, clotting, and pregnancy. There is a Yahoo support group that I have heard great things about. The big thing will be to see if what if any clotting conditions you have. This can help you weigh the safety and make an informed decision. Your pulmonologist may know a good hematologist to help with the testing and a good high risk OBGYN. Clots are very very common in and after pregnancy. Estrogen levels can cause PE, DVT, and strokes. I keep wondering about my pain. It is mild, like someone prodding me in my ribs by my left breast or like a muscle pinch behind the breast. No Dr is concerned so I just carry on. I do know it predicts breathing troubles. I have to wonder if it is muscle pain from working to breathe some days.
Lucy - I had PE diagnosed 8/30 and was able to return to work 9/8. I still have a lot of shortness of breath and difficulty getting a deep breath, but as long as INR is consistently monitored, my doctors felt returning to normal activity was better than being home. I agree! I have follow up with pulmonologist on Monday a.m. and will have Pulmonary Function Tests to see why I am still have so much problem getting deep breath this far in. He has also recommended another echo cardiogram as there is a possibility of secondary pulmonary hypertension. If I find out anything new and interesting, I'll post.
So pulmonary function tests were good as was a follow up echo cardiogram. I really didn't want the tests, but I guess in the long run, it rules out any other organic cause. The shortness of breath improves daily, but don't expect it to be completely resolved for months. The constant INR's are just an annoying bonus! Can't wait for that to be over. FU CT Scan end of November........
I am so glad I found this post. I found out I had pe on Aug26. I was in the hospital for 5 days. I returned back to work on the 21st of Sept part time and full time last week on the 28th. Today is Oct 6, and I am starting to feel panic. Walking the down the hall today I got very winded. I am not a fast walker, really never have been. My gout is acting up so my walking is slower than normal. I dont know if my mind is playing tricks on me or if my body is telling me to slow down and take it easy. I go back to the doctor next week for my pt test. I just need help to get over this feeling. Is this normal?
HI all
Thanks for your posts, the reason i am still off work is i get shortness of breath after 20m and have a ;pain in my chest on my right side constantly, i am also very tired and bretahless, i was admitted last week as they suspected i had another PE, however fortunately i didnt although i still have my chest pain etc, today i went in for my routine INR and it was low 1.9 normally stable at 2.5, i alsi expereicned pain 9 chest pain and grasping for breath, the duty gp told me not to worry as last week they did not find a new clot so it will be ease lol, he told me to breathe it and not be paranoid, i was very distressed by this comment i am not been paranoid!! i have sen my own GP since this morning who informed me that i am not paranoid but there was nothing they could do until i see the specialist does anyone else have the same problems.?
I am fed up with the fact that people think your paranoid he told me that he empathasises with me, how can he.
It is very easy for healthcare professionals to dismiss the shortness of breath and pain as anxiety and "hyperawareness" syndrome. While being more of aware of the way you breath can cause you to feel more symptoms, there is also a component that is not anxiety induced! The sad part of this that you now become afraid to mention any symptoms b/c you don't want to be deemed paranoid. It takes time to heal and while healing you WILL have symptoms, just keep your INR in check, watch to be sure your ankles don't swell and if the symptoms are severe enough, see a different pulmonologist.....
Rhonda-
I started a walking program when I started getting back into things. Before I did that 1 hour walking slowly had me dead. We loose lung function from the PE and we also loose athletic ability from being in bed for the days in the hospital and beyond. Muscles go quickly. Listen to your body and work on reconditioning yourself. If the winded turns into shortness of breath feel free to make a trip to the ER. I did that 2x in the 6 months after my PE. Do tell your doctor. You can ask him/her to listen to your chest and see what they hear. At the end of winter/early spring I was having a ton of great days. I loved locking up the cars on the car lot I work at. It is a lot of walking and I could go so quickly and still breathe. By summer, I couldn't breathe again. It is a roller coaster to say the least. You might try a cd or dvd of yoga breathing exercises as well.
Lucy-
YES! Granted my GP has been my saving grace. Sometimes there was nothing he could do but he always checked me out. He have me my 1st pulmonologist referral last summer. I hated her. She blew me off. I fired her. He referred me out again this summer and the new guy was great. That Dr referred me to the voice and swallowing clinic in town as they work with chronic cough. Both Drs there who are on my case seem really good and open. It seems my breathing problems are caused somewhat by vocal chord dysfunction which has nothing to do with the PE - granted is rather strange it started then - but, I am so happy to have someone listen! My GP for the last year had been doing his best with my shortness of breath and cough. The asthma meds have helped a lot. If you can't function with the symptoms that you have, fight to get them better. It may need exercise, meditation, breathing exercises, asthma treatment or who knows what else. Be your own advocate. Also, bring a trusted person with you who has seen you with those symptoms. They can chime in if needed and can remember to say the stuff you might forget. They also will tell you if the agree that the doc is a dud. My allergist wrote me off, my first pulmonologist wrote me off. It is a balance of learning to accept the changes in your body and knowing which ones are unacceptable.
Peggy - thanks for helping with your thoughts! Having another voice here is helpful for all the "newbies" to this journey.
HI
THankyou so much for your advice, it really helped me, I have made a website, a blog really for people to air their comments etc, can i recomend your website to people as i do feel that it is excellent and that you have supported me more than you can imagine, i hope you dont mind me asking.
Thank you so much for writing this. I had pulmonary embolisms for a month but was originally diagnosed with pneumonia (my veins at the time were impossible to get a big enough IV in). My symptoms got worse to a point where I was completely out of breath only mustering one word at a time before I went to the ER. I just got out of a 7 day stay in the hospital and was on heparin and coumadin the entire time. I have had stabbing chest and back pains now for over a month and they are continuing even after my 7 day treatment. I sleep continuously throughout the day and still occasionally get short of breath. I was given Xanax to help with the anxiety of not being able to catch my breath which has actually helped. My pulse is finally under 130 and was actually 95 today. my blood pressure is ALL OVER THE PLACE. It has gone from 130-80 to 87/42...... I still have many more appointments and am on oxygen now.
BTW, I am a 25 year old Female of lower average weight. I am waiting for the genetic blood tests to see if I am predisposed to blood clots.
Again, thank you for sharing and also stating what RECOVERY is like. It explains a lot of what I have been feeling since I got out of the hospital.
Lucy - Thank you! It would be great to have you link to my page. In fact, it would be an honor.
Marissa - It sounds like you may have yourself a collection of specialists. If not, you might want to get some. I believe that some hospitals have thrombosis centers. Maybe you will want to get yourself to one or have your doctor consult with them if you can't travel. The wild blood pressure would make me wonder a lot if I were you. If you haven't already, get an echocardiagram (piccies of your heart) and ask about wearing a holter monitor which will watch your ekg for 24 hours while you are home. I would journal so you may find connections to the peaks and valleys in your pressure. Also, if you haven't had additional CT scans, you might consider that. It might show if there are remaining clots or other lung issues that may be messing with blood pressure. The last though is, do you have any signs of bleeding? The anticoagulants you are on can increase the risk of bleeds and bleeds can lower blood pressure.
It has been a little more than a year since my hospitalization, and I still suffer from chest pain, shortness of breath, and fatigue; I’m glad to find out that I'm not the only one who has had a long recovery from PE. On September 22, 2008, I was taken to the ER because of shortness of breath, after an EKG and other tests; they decided to perform a CT scan. The CT scan showed that I had "Showers" of blood clots through out both lungs, that is how the doctor described it… They immediately started lovenox injections, a heparin IV, and warfarin. After seven days in the hospital, I was sent home on warfarin and my INR has been consistently in the 2.3 – 2.8 range. My hematologist has performed genetic testing, once while I was in the hospital and again this past March, both times I tested positive for the antibodies indicating I may have APS, (Antiphospholipid Syndrome, i.e. sticky blood), he is going to perform the test again in February to confirm or deny that I have this condition. Anyone else have a diagnosis of APS?
My 19 year old daughter had ankle surgery on 09/18/09 then was diagnosed with a DVT on 10/06/09. She was hospitalized and IV Heparin and Coumadin was started. Two days after she was in the hospital she developed a fast heart rate; thus a CTA was performed which showed she had multiple small pulmonary emboli that had showered in both lower sylobes of her lungs. They said it was the same treatent and continued her Heparin and Coumadin. Once her INR was 2.1 she was released from the hospital. Three days after being released from the hospital she developed chest discomfort. Her primary care physician ordered a CT chest which was done at his office. The CT chest showed that she now had much worsening of her pulmonary emboli; they were concerned she even had a saddle emboli. She was rushed back to the hospital and admitted to ICU. She continued to have the chest discomfort and only slight SOB. Her vitals were normal and her O2 sats remained normal between 96-99%. They started her on Lovenox injections and stopped the Coumadin. Her second day in the hospital, she developed chest pain, not just discomfort, now it was sharp chest pains. They repeated the CTA which showed multiple large pulmonary emboli in both lungs but no saddle emboli. The treatment remained the same with the Lovenox injections since her vital signs and O2 sat were within normal limits. She was released 5 days ago and she is taking the Lovenox injections twice daily. She is still having episodes of SOB, extreme fatigue, severe and dull chest pain, nausea, and she feels lightheaded. As with many of you, I have been trying to find more information on symptoms that follow Pulmonary Embolus and what to expect in the recovery. I have called her hematologist but was advised by the nurse that he would go over everything at her follow-up appt. I just need to know when we need to do something or if it is to be expected in her recovery. She is a sophmore in college and was hoping to return to classes next week; however, I am concerned that she will not feel up to it for several more weeks. Are her symptoms normal and to be expected, and if so, how long were your symtoms this severe? I appreciate your help!
Thank you so much for your article on recovery! I had begun to think my exhaustion was just me being a wimp. Interestingly, your research and everyone's observations have me concerned again over an issue I battled after experiencing a head injury seven years ago. When I talked with a neuropsychologist about how my colleagues often seemed not to believe me when I told them of the head injury problems and/or called in sick, the neuropsychologist said that a head injury is considered an "invisible injury" in that, because people can't see obvious signs of it, they only have so much patience with accommodating sick leave, headaches, and other sensitivities. Do you think PE may also be considered an "invisible illness?" I have a new job since the head injury and was enjoying starting over without being regarded as unreliable, but now I'm concerned I'll end up going through this perception problem all over again. I enjoy my work, I want to contribute, to be taken seriously, and to be believed. Guess I'll have to talk to a therapist about how to handle the interaction so I can safeguard my health after the PE but also still enjoy my job and contribute. I don't mean to sound like I'm complaining, because in truth I'm extremely grateful to be alive. I don't have the "why me?" and "this is unfair" reactions that I had after the head injury. Instead I'm most interested in moving forward, so I'm wondering if any of you have experienced problems in your workplace with people not believing you about your symptoms that you need to take care of and how you handled this situation - if you've experienced it.
James-
I have tested negative for APS but there are plenty out there who have it. Check out the APS friends and support group at http://www.apsfa.org/meet.htm
Vicki-
I am happy to see that your daughter has stable vitals. That is very important. The clots will take time to dissolve and her body needs to heal. I bet next year will be markedly better than this year. That said, if you don't feel you understand the answers as to "why" then keep looking. Some doctors that you can consult are a family doctor or other primary care, cardiologist, hematologist, or pulmonologist. You can also try to find an anticoagulation clinic. Another resource is a nurse call line that many insurance companies keep. Counseling can help as near death experiences are stressful to say the least. I was out of work for 3 months. Can she maybe arrange her classes to be independent study so she can work at her own pace? Another idea is having her continue with a partial course load. If at any time her symptoms get markedly worse, seek emergency care. I suggest finding an online support group. You will find options for those sprinkled throughout my sites. Also, feel free to email me.
Mary-
I have been lucky. Work has been good for the most part. This year the entire company is cracking down on absences and that has been hard to say the least. I know it could be a real problem at some point. I am hoping I don't get H1N1 for that very reason. If you are having problems, have your doctor document everything for them. It is an invisible illness. If you have an EAP at work, seek their help as well. Also, if you have a newsletter or the like at work, maybe write an article about what PE is and how to avoid it and identify it. The therapist you have should have some good ideas. If you have any FMLA time left, use that to cover the chronic conditions that you have as souvenirs of your PE as that is covered and then you are sheltered by federal law.
Hello. Thank you so much for writing this! I felt so relieved to know another person's experience.
I had just turned 21 when I had a pulmonary embolism. I stayed in the hospital for 7 days. Since then I've been home for almost 2 weeks.
A week after I left the hospital, I went back to college. I felt fine during the day but then really exhausted at night and decided to rest for a few more days.
So far I've been really lucky. I haven't experienced any pain, only a slight shortness of breath. This was my first major health problem... before this I had always been the healthiest person ever, taking all the precautions to stay that way.
I feel that my mind needs to recover from this ordeal just as much as my body. During my hospital stay I broke down in tears twice. After being released, I felt constantly scared of any problems in my body. At night I was afraid to fall asleep and never wake up again.
It's true that the recovery is much longer than simply the hospital stay.
Carina, I am glad that recovery is going well. Fatigue was my biggest problem. I still wonder if I am more tired than I was pre-PE. Hard to tell now though with so much time past. The hospital is who keeps us alive and makes sure we are on a safe path to recovery. The real recovery is at home, college, work etc... Many colleges offer free mental health services. If you have some available to you, use them. There is a lot to sort out in one's mind.
I had a PE and was admitted to the hospital on Oct 1st this year. I was in the hospital for 5 days. I returned to work after being off for three weeks. I'm still part time but will increase hours in a week or so. I am still dealing with a lot of fatigue and a constant lightheaded feeling. I do feel it is from the PE. I was very lucky. I had extremely large clots in both lungs. I went to work for over a week with SOB and swelling in my affected leg that got worse by the day. I was told by several doctors I was lucky to have survived and that people die everyday from PE's that are a lot less invasive than mine. I only went to the ER because I had a massive headache, nausea and SOB that did not go away after I got to my desk the day I ended up in the hospital.
My O2 sats were never below 98 before I went in the hospital. Since I have been out they run 91 with light walking and my pulse goes up to 120 to 150 easily. I get lightheaded and faint feeling when talking or standing in one place for extended periods of time. I was fortunate though that the doctor that saw me in the ER ordered a D-Dimer blood test and when it came back elevated they did a lung CT with and without contrast. That was when the truth came to light. My flight home from a two week vacation was probably the culprit.
All in all it has been an eye opening experience. I am slowly getting better. I have problems with an abdominal bleed a few days after I got out of the hospital when my warfarin spiked up. I have had problems with fuzzy vision, headaches, fatigue, shortness of breath, fuzzy memory and slow thinking as well as nausea and diarrhea almost daily. I think it will get better with time.
Other people have a hard time understanding how slow the recovery is and that it takes time to feel better. I have said numerous times that when a person is ill if they don't have an external wound it is hard for others to understand how sick a person is.
Thanks for your wonderful site and information regarding your own personal experiences and recovery!
I am so glad to find a site that offers support such as this. I was hospitalized Labor Day weekend with 3 large PEs, and I was kept in the ICU for 5 days with the usual heparin drip and coumadin intro. It has taken over 2 months for my INR to finally reach 2.97, all the while, taking 16 mgs of coumadin nightly. I have been in the ER twice since my hospitalization with SOB and related symptoms. I have seen a hematologist and was diagnosed as Protein C and Protein S deficient. My hematologist informed me that I will be out or work for atleast one year, possibly longer, as there are residual problems stemming from my experiences. I am being sent to cardio this week to rule out any cardiac damage and to rule out secondary pulmonary hypertension. I am also having a repeat CAT scan to see if my clots have dissolved at all. My recovery has been shaky, at best. I am scared when I go to bed each night that I may not wake up in the morning. Dizziness, fatigue, anxiety are all part of my daily norms. This entire situation scares me because I am a 45 year old single mom. My daughter has seen me at my worst and she lives in constant fear that she may come home from school one day only to find me dead. How sad. She'll really flip out when I tell her that because my blood disorder is inherited, she'll have to undergo some lab work to determine if she is going to need treatment. I hope/pray each and every day that God sees fit to let me see another day! Thanks for letting me share. Nobody in my family understands and although my friends say they want to listen, they really can't know what it is like to live with this condition.
THANK YOU for this article. I can't tell you how much I appreciate it. I was in the hospital less than 2 months ago and diagnosed with a PE. I have had chest and back pains ever since, sometimes worse than others, and it is such a nerve-wracking feeling. Reading this article, and the comments that have followed, have put my mind at ease. I don't want to be viewed as a hypochondriac or alarmist, but as others have mentioned, these residual feelings are so scary and unnerving, it is so hard not to panic.
Thanks again for posting your experience(s), I truly appreciate it.
Allison
A well-loved wife & mommy of two:)
I sent this article to everyone in my family - thank you so much! After much Googling and several Doctor's visits I finally feel more relaxed that my fatigue, heart racing and lightheadedness is all normal... It's been a frustrating process trying to get recovery information from the Doctors. I was diagnosed with PE a month ago and after a week in hospital stayed home for another 2. I expected everything to go back to normal and couldn't understand why I felt so tired (almost fell asleep at the wheel!) but am now learning to listen to my body without feeling like a "hypochondriac". Thank you so much for this article and for everyone who's contributed to it!
Nita says:
7 months ago
Thank you sooo very much for writing this. I am 4 weeks past the PE & 2 days in the hospital and and am trying to figure out why I have so much chest pain. They have run extra blood tests and a chest X-ray but only have guessed it could be plursey or infartation (sp?). Your time spent on this article was a blessing to me. Thank you.