Continued discomfort after a PE

Chest and lungs
21

i'm sorry, i'm going through some stuff, myself. I've been through varying degrees of anxiety, stress and possibly mild depression before.

Sometimes, i feel like i'm losing it, but i know deep down there's nothing wrong with my head, but could a little clot brake off from another circuit and get logged in my brain?

For some reason, i can't explain, i've developed tunnel vision and I can only do one thing at a time, and even the simplest things take a lot of effort. One minute, you think you can solve the biggest problems, the next minute, you forget where you left your keys, parked the car, or even attending to your most important resposibilities.

Living with VTE isn't easy, and it affects people around you, No-one should be witness to it.

22

I too have just recently been diagnosed with PE. I was put on blood thinners immmediately and have been taking them now, twice a day, for little over a month. 

There are days that my chest really hurts I am short of breathe.

This is very terrifying because I always think I'm having a heart attack because the pain also comes with chest tightening.

My health isurance is in the process, and so I have had to result I have going to the ER 6 times this year for this very problem. The doctors in the ER keep telling me that everything is "OK" and to keep taking my blood thinners. Which I absolutely will do. I am just unlclear if it's normal to have these symtoms, after taking my blood thinners for over a month. 

I'm certain I need a specialist to get a clear and concise answer. It's all just so scary  to have to keep gping and to not be clear as to why this is a frequent occurance.

23

Hi nixy 70361,

After the noac/anticoagulant loading phase, (the state when your body has consistent viscosity of thinner flowing blood) the dormant/residual/undetected clots whatever shape/s or form/s stop growing and or forming. At this point the clots may begin to dissolve/get reabsorbed or even break off in bits and pieces of any size and travel to another location for reabsorption, to dissolve and/or cause disruption in nutrition/bloodflow- hence worries, pain, uncertainty, anxiety etc, etc.

So it's very important to be careful and look after yourself the best way you can. Do some research, speak with genuine people that have had large & small clots etc....it's an unfortunate killer, but it can be under control with better cognition and care.

Here's an analogy of incompetence where professionals and appropriate authorities work within the Health & Social Care Act...

Case A- the supervisor

A person with a serious pulmonary disease shortness of breath, pain when breathing (an ex smoker) without guidance gets a job in an asbestos cutting factory that has no health & safety policy, no manual handling recommendations, and no requirement for personal protective equipment or breathing apparatus, everyone in the factory is a heavy smoker. Wrong place, wrong time, wrong people.

Case B- the manager

A person has been diagnosed with 3 large Dvts in both legs, and one small UEDVT in right shoulder, is prescribed NOAC. A week later, the person gets drunk and decides to go on an endurance run, much like a marathon and gets Acute PE and dies out of hospital due to 'natural causes', whilst on a UKMI noac register under a NICE guidance.

This person leaves a consultancy- 50 employees, a buy-to-let 120% mortgaged no.11 property portfolio, 13 children under 16 in private education, three civil partners and an estranged wife, pet dogs, cats, a large catteries, kennels, goldfish. all of whom were reliant on the deceaseds work and credit loan facility for day to day cash flow for food, heating and utility expenses.

24

Hi Nixy,

I am very similar. I had a PE diagnosed (after being missed diagnosed for about a month) now I am on blood thinners (Xarelto) but continue to get the chest pains and chest tightness that I did prior to the blood thinners. The worst part is the chest tightness and pressure, it feels like somebody sitting on my chest. I actually went to the ER one night, but everything checked out, so they just feel like you're wasting their time. When will this go away?

25

Hi,

I know this was posted some time ago, but I am glad others are having the same problem (not that I am happy we are all suffering). I had a PE in my left long September 2015 and was hospitalized. My bloodwork came back as being Homozygous for Factor V Leiden. This means I am on blood thinners for life because I have a 50 to 80 fold increased risk of thrombosis.

I have been suffering with chest pain since the PE. I've seen numerous doctors, from orthapaedics to internists. Finally, I found a hematologist who specialized in my disorder and he told me the residual pain is most likely a result of the scar tissue in my left lung. I am still struggling to handle the anxiety this causes me and have not found a way to fix the pain.

If anyone has further input, please let me know!

26

Hi all,

I have had numerous trips to the ER over the past 1.5 years for fear of having another PE. Thankfully, I have checked out fine, but the pain persists. Quite frustrating.

27

Hi, 

from my experience and interpretation, the residual pains in your left lung, is like a homing beacon for your immune system to try and repair the damage the pain is symptom of, and also dissolve the clot by enabling fresh blood to flow around it. The may also be nerves in area concerned, upstream and downstream.

Good diet, plenty of hydration, and try to take full breaths now and again, the sharpe twinging pains were (for me) unbearable and exhausted me, tired all day long just breathing. 

I used to sit and watch tv/computer with my feet raised, making it easier for my heart & lungs to work, for many months on end.

I'm a lot better now.

28

Hello, I had hundreds of PEs in both lungs 3 years ago.  I was started on warfarin and must stay on it for life.  They were unprovoked and no definite cause.  I had severe pulmonary hypertension as well, which is now resolved.   As far as treatment goes, rivaoxyban has not been tested for use in PEs only atrial fib.  Warfarin is the choice of treatment.

29

Hi all, I don't usually get involved with online discussions but have been very encouraged by all the help and advice on this forum, so thank you!

Like most of you, I was diagnosed with 'extensive' blood clots in my right lung 9 weeks ago and have been on a roller coaster since then! The GP was fantastic as I went in to get antibiotics for a chest infection (which I did have) but he did the D-Dimer blood test to eliminate chance of clots which came back positive. Taken to hospital and given Clexane as I was fully scanned and tested. Still believed until the last minute that it was probably pneumonia so was completely shocked when it turned out to be a PE. 

My medical treatment has been great, my GP practice have been very helpful but I'm not due to see the consultant again until the end of May and I'm scared. I have had real tightness in my chest (particularly bad this week for no apparent reason), I get exhausted after just tidying the kitchen or cooking dinner and still struggle to get deep breaths much of the time. The GP is sympathetic and says it will just take time so it's encouraging to read that other people have had or are still having the exact same symptoms. Have felt very anxious and depressed, have hardly been anywhere other than home since it happened and have no idea if the clots are dispersing, or whether I have scar tissue that is making my right side and back feel so sore for no apparent reason at particular times.

it also makes it difficult at home with two kids and a husband who have been brilliant, but because I look normal, it's easy for them to forget that I'm still not well. I then feel guilty that I can't go to the park with the kids or keep on top of the housework etc. Just because I'm at home all day! It's tough. The psychological and emotional impact of having a PE is huge and was even mentioned when I was in hospital, so keep thinking that I must be 'weak" for not recovering more quickly!!

Thanks

30

I had a factor 5 bilateral pe almost 4 years ago and have spent so much money on false alarms now I don't even know what pains are real or not so I'm in the same boat 

31

I know this is an old thread. I’m relieved to hear that there are others out there going through the same thing that I am. I had a PE in 2004 and then again December 2015. I have positive lupus anticoagulant which diagnoses me with antiphospholipid antibody syndrome,  a clotting disorder with numerous other symptoms hence the term syndrome. After this last PE I can’t even count the number of times I’ve been to the ER thinking it was happening again. Especially because people with my disease tend to still clot on anticoagulants. I took Xarelto for a year and had 2 Mini-strokes. I am now on Coumadin. I get significant pain in all sides of my lungs.....front, sides and back. Sometimes it’s achy and other times sharp. I’ve also been told I have fibromyalgia and  costochondritis which is arthritis and inflammation around the sternum and ribs. 

I think it must all be related. When I’ve gone to the ER I’ve been told I have Pleurisy. Some docs are quite nice and sympathetic about it but some have been compete A#@holes, treating me like I’m a nut case just making extra work for them. If only they could feel like we do for a day!  

32

Hi, it's my local doctor's opinion that the residual pain following removal of blood clots- after 4 months on Sintron( Warferan)

is caused my scaring on the linging of the lungs. I had multible small blood clots in each lung and now I can breath easy enough but if I take a sudden deep breath or get to exvited I ferl a stabbing pain under my breast. Does anyone know if it's possible to come off Warferan in time or is it a lifetime crutch as my pulmonic doctor says here in Spain. It is hard as I've sever arteritis in all my joints and can't take the natural green vege and spicy curries that used to keep arteritic pain at bay. Any help with be greatlfully received.  

33

Hi, it's my local doctor's opinion that the residual pain following removal of blood clots- after 4 months on Sintron( Warferan)

is caused my scaring on the linging of the lungs. I had multible small blood clots in each lung and now I can breath easy enough but if I take a sudden deep breath or get to exvited I ferl a stabbing pain under my breast. Does anyone know if it's possible to come off Warferan in time or is it a lifetime crutch as my pulmonic doctor says here in Spain. It is hard as I've sever arteritis in all my joints and can't take the natural green vege and spicy curries that used to keep arteritic pain at bay. Any help with be greatlfully received.  

34

I had my PE a month ago and my PCp said my chest/plural pain is normal . He said as I'm on blood thinner and healing, that some lung tissue can die in the process. I take that as the possibility I will have  permanent lung damage or worse. I'm sure scar tissue can be formed as well.

35

I'm sorry to hear this...i had my PE one month ago and am on Xeralto . I found out I am positive for a Factor V  and was dx several months ago MCTD (Mixed Connective ). Wow, they assured me my blood thinner would take care of my PE & the DVT in my leg. I guess i cannot take anything for granted .

36

May I ask what the symptoms of your ministrokes were?  I also have pain in my back, under my arms, and chest .  I was told this is normal for only having the PE a month ago.

37

Hi guys! 

I had my PEs about a year and a half ago now, caused by birth control. They caused a rather large lung infarction in my lower right lobe.  Like many of you, I have constantly dealt with pain in my right lung ever since, which can range from dull to sharp and tiring, and sometimes even like a shock down my side. The pain even radiates to under my breast, and can get very painful. Though I’m sad so many of us have to deal with this, it makes me feel better to know that I’m not alone. My hematology NP and my primary NP both explained to me that this lingering pain can last for years, and possibly even life. I’ve had so many trips to the ER worried that maybe I have another clot even though I am no longer on the birth control. Thankfully my primary NP is amazing and understanding, and never judges me when I come in for follow ups from the ER.  I’ve learned heating pads help immensely if that helps anyone ☺️ Sadly, from this situation I have gained so much weight, and jogging hurts. I’ve started swimming though, and I’m hoping this helps me start losing weight, which hopefully in turn takes some pressure off of my chest. 

38

Hello PE group (what a terrible group to be a part of) I had a PE 3 weeks ago and it was the most subnormal pain i've ever had.  Now 3 weeks later i am having trouble sleeping but only at night time.  It's like during daytime hours i'm fine and have no pain.  I asked my Dr about it and she seems to have no answers.  It's like they don't even study PE's, it's crazy.  Sometimes i'm in and out of the hospital with this pain in the last 3 weeks. Is this normal? Should I go see a pulmonologist? This pain is bad

39

Jesus Christ i've never heard a better reply in my life...NOBODY KNOWS THE PAIN....I am definitely going to use everything you guys are saying to help my situation i just had a PE 3 weeks ago and the presumption of pain is high every time i feel something in my chest/lungs and the doctors can't give me any info

40

Hey Suzyp I know exactly what you are going through i had my PE 3 weeks ago and its no joke i wish the doctors knew what kind of pain we go through and now i am hearing that it could be for LIFE????? This is unimaginable...let me ask you something? Is your pain 24/7 or does it come and go? Mine is fine during the day and at night time it is really bad and the Dr.'s have no explanation for this....I don't get it? Am i gonna be the one who sets forth a standard for all the BS that i go through with this PE???  I really need some standards so i am not always thinking i am getting another embolism but believe me i'm here with all you guys....this s**t sucks bad