Forty year old male here. Seventeen months ago I had a big bilateral PE. Been experiencing some chest pains since then, which from reading posts here is not an uncommon experience. The latest bout of chest pains started after Christmas and have been constantly present since then, sometimes worse than others. My cardiologist assures me that because they are not related to exertion they are not heart related. I am on permanent anticoagulants (dabigatran/pradaxa).
Overall I know my health has been downhill, certainly in recent months. The thought of going for a decent walk (even just 4km) has me doubting my ability to manage it without needing a seat half way.
A week ago I noticed shortness of breath beginning. At first it wasn't much, and I tried some old asthma inhalers to see if they helped (no). No surprises as the shortness of breath did not feel like asthma. On Thursday I visited my GP and she did blood tests and renewed my asthma inhalers. Over the course of the week the shortness of breath when doing physically mild activities (like walking around the supermarket) grew to the extent that I feared I might faint a couple of times. On Saturday night I decided that I wasn't happy being at home in this state and drove myself to the emergency department of the local hospital.
The staff at the hospital were very attentive and I quickly had ECG, x-ray and MRI. While under rest in the ED my heart rate and blood pressure dropped considerably. (I note that, unlike my PE, my blood oxygen levels were never a concern.) I was moved to a medical ward overnight, and, because the tests did not show any clot or items of major concern (some evidence of small clots in my lung, but they may be a remnant of my PE and unlikely to be of interest apparently), I was quickly discharged and sent home.
The doctor thinks that the chest pain is possibly muscular pain in the chest wall following the PE and not of concern. No explanation is given for the shortness of breath.
So, here I am. Very glad to not have a clot, but with no answers for the relatively recent onset of shortness of breath. A walk to the letterbox makes me breathless. Walking to my kitchen to make a cup of coffee is enough. This experience of breathlessness feels very similar to my PE. It seems that the medical hope is that it will improve automatically.
Has anybody else experienced this in their post-PE journey? Any wisdom to bring?
I am also 40, and also had my PE about two years ago. I was a healthy, active 38 year old. Now I feel the same way you do. I can't do what I used to. I feel like my health has gone downhill and I get tired just going up the stairs. The pain is the scariest. The random aches and pains in the chest area with no cause and unexplainable by doctors. I try to take deep breaths, and keep a smile on my face. I hope it works 🙂
I would recommend you go back to your cardiologist and mention your worsening symptoms. Have you ever had an echo or stress test to check for right heart strain? I'd push for those tests if not.
What were they looking for when they did the MRI? Normally they would do a CTPA or V/Q scan if they were looking for PEs. I don't know if an MRI would detect them.
Apologies, my brain wasn't working. You are right, it was a CTPA, not a MRI.
Hi Chris,
I have been on this site for just over 3 years and notice that extent of the PEs vary from small to considerable. As far as I can see, recovery time is related to the severity of the original clotting episode.
My PEs were extensive and my recovery continued well past 17 months, so I wonder if you are in the same position? It is also true to say that having PEs can be stressful. This can also induce breathlessness, which could get mixed up with the physical symptoms to amplify the feeling of shortness of breath.
Little and often is the best form of exercise. I found walking every day helped and gradually the distance could be increased.
HTH
Peter
I have been told that I have dysfunctional breathing which started from my PEs. I have finished my course of blood thinners and have monthly D-dimers which have all come back nice and low, so fingers crossed I will be OK. I get out of breath easily and I sometimes have trouble taking in a deep breath and it often feels as if something is leaning against my chest. I only had my PEs last year so I am hoping with time this will get better. My resting pulse is slower than it was and my blood pressure is lower. Some days are better than others sometimes I can rush around and do loads and others just walking up the stairs will shoot my pulse up. Some blood thinners can give you chest pain like apixaban (eliquis). I don't know about pradaxa because I have not tried it, but have you ever considered trying a new anticoagulant? Did you have lung infarction with your PE?
Ya'll, (I am a Southerner) what you are feeling is NORMAL. I had bilaterals plus a DVT 27 months ago. in the first 6 months I went to the ER three times. My chest pains were NOT another clot nor my heart but just fright. An antidepressant helped with that and so did TIME. I could not walk to my mailbox and I had owned a hiking company for 30 years and had walked thousands of miles. in fact, a couple of years earlier I had walked 500 miles cross Spain, alone, and could not walk to the mailbox. You most likely WILL get better. I did. Am off of Coumadin now, after 24 months and THAT made me feel better as it made me feel tired. Just do a little at a time BUT a little more every couple of days. Am only on a 325mg Aspirin daily. I am a miracle and so will you be. I was allowed to fly to Israel last Oct, the 2 yr anniversary of my clots and I THOUGHT that I would never be able to do that! drink a lot of WATER BTW! STAY IN TOUCH! I am making it so will YOU!
Hi Chris,
Did the doctor say you have lung damage from the clot? I had a clot last June and was told part of my lung had collapsed but was told it would recover. Do you sit and deep breath, fill the lungs and let out slowly through the mouth. If I do not exercise, I appear to have shortness of breath. The doctor told me moving was important to keep blood flowing.
I was in the hospital a month ago for bilateral PEs, but on Monday of this week I had a bout of slight nausea that lasted for a minute, then I had what I thought was shortness of breath and chest tightness/soreness on my right side. has anyone else experienced this? I'm 27 years old and 185lbs
Good morning and i am so sorry that this has come up to scare you. I do not know if anything is considered normal after having these clots but if anything were to be it would be what you had. I did the same. I was afraid to turn over in the bed . If you are on an anticoagulant then you most likely are not having another one. BUT if the pain continues I would certainly call my doctor and see if he would send you for a CTScan. Best of luck and stay on top of this.
that's the problem, with mine I had no pain whatsoever so I had no way of knowing what it was until I started gasping for breath.
as for anticoagulants, I'm taking Eliquis.
An update from me...
Shortness of breath upon even minimal exertion continues. This morning I was out of bed and breathless in the shower. I an unable to work full time and get exhausted from just a couple of simple tasks. It seems to me like I am still deteriorating. The chest pains have gone from the regular presence to throbbing in my chest and I sometimes get light headed.
Have been to a respiratory specialist who is recommending me for further tests. Concern is that it could be a form of pulmonary hypertension. Waiting for the hospital to get to me for an appointment. The waiting with no answers is no fun.
In the meantime I am being transitioned from dabigatran to warfarin so that the effectiveness of the anticoagulation can be measured. In the transition I'm back on clexane injections and sporting some impressive bruises again. Blood tests keep me entertained.
Update from me another six months on...
Around easter I had a full set of tests, radioactive lung scan, right heart catheter, xrays, ultrasounds on my calf DVT from two years ago, spirometry etc. Basic conclusion is that both my cardiologist and resp specialist were both happy with me, had no answers and said "go away and work on your fitness.
I was %^&#&* furious.
All of a sudden I went from being under the watchful eye of the medical establishment to having no answers, no particular hope and feeling like there was no assistance.
On the plus side I'm not actively dying. A CTEPH diagnosis had seemed like the most likely match, and it's good that I don't have that...
So six months on I battle onward. I can do some things but must be careful not to push myself. If I get over ambitious (like a 20 minute walk) I pay the price later on with intense chest pains and exhaustion. Again, I guess this is normal.
Thanks to all you who share your stories on here. I get comfort from feeling like I'm not alone.
I'm now on my fourth different anticoagulant, with lifelong continuation prescribed. Two years on the DVT in my leg is still swollen 5cm and causes me regular pain. Chest pain and shortness of breath is a daily reality. My energy is changed and it seems I cannot turn the clock back.