Scarring post PEs

Hi. I am new to this site too and was drawn to this discussion because of hubby’s recent experience with pulmonary embolism. His came out of nowhere, no symptoms of DVT no pain just extreme tiredness and breathlessness. He was told he had extensive clots both sides of lungs and some right heart strain. He was in hospital for three days. Now, 4-5 months later he still gets very tired and lacks energy. Hopefully the CT scan he will have later this month will show improvement and it will be just a matter of time before he gets back to how he was. I am sorry that there is not enough support for many of you out there suffering similar. Until this happened I knew very little about pulmonary embolisms but did quite a bit of research online. These forums also help. Even if it’s just in knowing you’re not alone. I wish you all well and a speedy recovery. 

 

Hi Glynnis! Nice to hear from you! I just had a CAT scan in, i think, february? It's all clear . I saw my Pulmonologist last week. I still have shortness of breath and get tired reallyceasily. But my Doc doesn't seem to think it's from my lungs. I'm 40#'s over weight and 53 years old but very active. I do therapyc2 hours a day 4x a week to prepare me for return to work. I do great on the treadmill and stuff but stairs and inclines are still difficult. I guess this inflamation can last a ling time, but i can find NO ONE to tell me about how long! I do Advair inhaler2x a day and albuterol if i need it. I haven't needed ot in 2 months!👍my advice is keep researching and share what you've learned. Please tell your Husband not to give up, It's a sliw orocess. Being active is the only way to get better! Good luck and hugs from me! We are survivors!?

P.S. (sorry for the typo's). I had my bloodclots September 1st 2017. 3 monthsvon Eliquis blood thinner. Then off.

Yes, when it comes to “how long before I’m completely recovered?” You might as well say “ how long is a piece of string?” But it certainly sounds as if you are doing the best you can. The consultant  told hubby he will most likely be on blood thinners indefinitely as 40% chance of it happening again. He is so much better than he was but still has a long way to go. Any journeys we now take we factor in more stops and try not to sit for prolonged periods. If certain activities wear you out it’s sensible to pace yourself and listen to your body. Enjoy your day!

Absolutely!👍

Hello,

I have just been prescribed apixaban for 3 months as I have PE following hip surgery. Have you been able to stay free of blood clots since. I have been reading posts from people saying they have had them return and are on tablets for life. I could not bear that as I am a normally healthy 61 year old.

Hi Jen,

Although your message wasn't for me, from what I understand I think u should be fine. From what you said, your PE's were most likely caused by the prolonged bed rest/inactivity brought about by your hip surgery. Apparently this lack of movement can be a major cause, the same as how people develop blood clots in their legs after long haul flights, which then travel to their lungs etc.

For people such as myself that have been prescibed life-long medication, the cause of the clots is usually difficult or impossible to determine - hence the erring on the side of safety in regards to meds by the doctors. In my case the docs felt it was either a) the contraceptive pill, or b) genetics (I tested positive for a genetic marker), or a combination of both.

I've been told that as long as a person is taking the blood-thinners, it's almost impossible for the clots to reoccur. The decision to recommend them for life is a big one, and if you've only been prescribed them short-term, that's possibly an indication that your docs don't think it's a long term problem for you. There are definate risks to taking these kind of meds for a long time.

My massive, almost fatal, PE's occurred over 3 years ago, and I've had no recurrence, although as I said, I'm permanently on meds now, and have some side effects.

It's basically an odds game - I think if your docs thought you needed it, you'd be on meds for life, but given the precipitating event, I'm guessing they think that's unnecessary, unless u are hospitalised or rendered immobile for a long period again (in which case I reckon they'd be keeping an eagle eye on you!). The main problem, judging from my experience, and those of others here, is having your symptoms taken seriously in the first place.

I'm not a doctor, so of course I may not be right. I guess the ultimate judge of your health is you - if something doesn't feel right, get it checked out straight away. Better to have to pay a bill than to not be alive. But honestly, from what I now know after my journey, I think your treatment sounds appropriate. I most certainly understand your concerns and your fear after such trauma.

I hope you don't mind me replying - I'm kinda new to this!

God bless

Hi mowwee,

Having these clots was a shock as I was not inactive. When you have a new hip they want you walking as much as possible. The doctors could not understand why I had them as I did not have the recognised signs which is, aches/pains in the calf or warm to the touch, being active. Normally it is within the first two weeks mine was between week seven/eight, I was out walking everday, going shopping etc,

While out walking one day I slowed up and was out of breath, this happened for a few days, I thought I was coming down with a cold. Some days later I woke with a really bad pain just under the breast bone on the left, went to the doctor in the morning and he was worried it was clots even though it was unusual at eight weeks, he sent me for an x-ray and said I could go to hospital if I wanted, which I did not. That night I was in agony and called an ambulance, an odd thing happened when I got to hospital the clots had moved sides from left to right, maybe that is why I had so much pain.

I just could not take these tablets for life, I have always kept fit and at 61 do not take any medication from the doctors, these tablets they are dangerous I should think for long term consumption. I am going to take bromelain in september when off the apixaban it is possible it stops the platelets clotting. I am happier taking natural as opposed to drugs.

Sorry Jen86183, I definately meant no disrespect when I assumed your surgery must have involved a term of inactivity. It can be a relatively short period too, maybe even the time you spent in theatre and recovery.

Perhaps, like me, your clots actually formed over a long period of time, and just weren't picked up until after your surgery. I was told that mine may have been there/developing for some time, which often produces no or very mild symptoms. It is when they break off or start moving that the pain/dizziness/breathlessness happens, so I was told. I never had any swelling or pain in either of my legs, and when they ultrasounded them in ICU, they found no clots there nor any evidence of them having been there! I think being told just to look out for leg swelling/pain is a mistake.

You're right about medications - they certainly do have side effects and possible complications, and the decision to prescribe them, particularly for life, is a major one. For example, the blood thinner I am on, cannot be quickly reversed, unlike Warfarin. What that means is that if I suffer a major bleed for some reason, it will be worse, and it can't be slowed, like it could be otherwise. The trade off, apparently, is more stable blood levels which don't require numerous blood tests and monitoring.

By all means look after your health the natural way if that's what you prefer, just make sure you tell your docs what you are taking. Have they suggested low dose aspirin or the like? Safe, and judging by studies, effective for those NOT on other blood thinners.

Well done for being as fit, active, and healthy as you sound! And thank God you are still here with us

My hubby had a heart attack in february, he was put on a low dose aspirin a week later his urine was blood red, he had to spend another 3 days in hospital having his bladder rinsed to clear the blood out. So aspirin is a no no, as you can see we are both going through it at the moment.

I am angry at having my hip replaced as I always said when people went on at me "I prefer my own bones" and I have been proved right. Yes, I had pain and my legs were unlevel but I was healthy, pain can be managed. I do not want pharmaceutical drugs, they always cause more problems than they solve.

Sorry mowwee I have been having a rant today.

No worries jen86183, we all need to rant every now and again.

My husband died after suffering his first and last heart attack, at the age of 44. I was 40. My mum had died a few years before, and my dad died just before I ended up in ICU, and almost died myself, because of my pulmonary embolisms. You and your husband are still alive and together - I wish I could say the same.

As I said before, by all means go the 'natural' route with treatment, if that's what you prefer. Lots of pharmaceuticals were developed as a result of research into the active components of these. Don't, however, make the mistake of assuming that because something is 'natural' in origin, that it is always effective, or never harmful. Likewise, don't assume that because something is produced by a pharmaceutical company, or recommended by a medical doctor, that it must be harmful. I know that's tough if you've had a bad experience, but you have to be careful in your conclusions. There will always be deviations from the norm, because we are all unique, but that applies to everything - good and bad.

I desperately wanted to be a naturopath when younger - I ended up studying science, including biochemistry, microbiology, pathology, and statistics. I say the above based on my studies and experience.

I wish you and your husband all the best, and the best of health.

So sorry mowwee for your loses, that is so sad, then becoming unwell yourself makes it so much harder to cope with. It does make you realise you need to be thankful for what you have.

With the tablets hubby is on one can cause kidney damage and another can cause liver and thyroid damage, I think what is the point of him taking them. The worst was bisoprolol that made him so ill.

After finding out I had the clots in the lung, I started reading up on them and learning as much as I could. By reading, I remembered the previous week I had had a bad pain in my stomach, it made me stand up, it happened twice I said to hubby I have this strange pain but it is not an upset stomach, it went and I forgot about it until reading about blood clots.

I now believe either some blood or debris came away from the hip area, went to the stomach then the lung. I rang the hospital and explained everything that happened as they only focus on the legs, the ward sister said "I have never heard of that, it is the legs they come from". I now believe they need to be open to the fact there are other ways clots move around the body from surgery but sadly they have tunnel vision. If I had known this was a clot I could have done something a week earlier before damage was done to the lung and possibly the heart as there was a question mark over the ECG. As I was completely healthy at pre-op in april everything now is from the hip op.

After learning more about clotting, I wonder whether the trauma of bereavement could have altered the blood chemistry, it is a possibility.

Take care.

Hi Mia,

Your experience sounds very much like mine! Not sure if you're on life-long blood thinners like me, but on more than a few occasions I have had an almost identical repeat of all the precipitating symptoms of my PE's - gasping for breath, sweating, coughing and wheezing. I have also been left with a permanent, persistent cough. Even though my docs said it was almost impossible to recur (b/c of the meds), they did at least listen to me, and promptly sent me, more than once, for the proper tests & scans. Every time they were clear! Also like you, that's what started me looking for a reason, and hence to this site.

Maybe there just isn't enough knowledge regarding the long-term damage done by PE's, or the symptoms experienced afterwards. You're not alone - seems like it's not something most people survive without some kind of residual effects. For me at least, the trick has been trying to gain the confidence to believe that I am probably safe now.

Good luck X

Finally got my password reset to be able to respond on here. Canadagal, hope all is well with you.

I am not on blood thinners for life, and if they prescribed them to be honest I don't think I would take them. They made me sicker I think than the post embolism did. I am tiny, 5ft tall and 93lbs and didn't "fit the profile". Not the first time I have heard this (had a dead gallbladder for 8 yrs with textbook debilitating symptoms which they ignored because I didn't fit the profile and never sent me for a simple test to rule it out- you HAVE to be your own advocate unfortunately).

I feel better now, of course the day after I finally went in for x-rays. Here is the things and the same thing you hear on here over and over again: the docs are wrong. I am absolutely convinced this is due to scar tissue from the embolism. How many of you with lingering issues cough up a ton of blood post PE? Thats the dead lung tissue coming out. The more you have of that, the more I imagine of your lung died and the more potential for scar tissue in there. Of course I am speaking as a totally medically uneducated layperson. But it's the only thing that makes sense! I won't believe anything otherwise anymore. 

How is it we all have the same stories. Fatigue, pressure in the lungs or pain, out of breath, dizzy, etc etc. All embolism symptoms WE DID NOT HAVE pre embolism? I knew this last bout was very likely not another embolism. I would check my oxygen from an oxymeter, which also checks PR, took my temperature. As long as all 3 are normal, the odds are pretty dang low that it's a PE. But I could draw you the outline of my lung from where the pressure/pain is. This last bout I finally went in for tests and xrays- if blood test was positive we would have gone for CT Scan, and xray was just to make sure something else was not going on (ie: cancer. Not all cancers show up on bloodwork). I waited 4 days to go to doc when I had the inital PE and promised myself I would not ignore symptoms again. I did wait two months, but at least I eventually went even though I was pretty sure it would all be normal.

So for us that have all these symptoms, but oxygen is normal and docs tell us its not related and not in our lungs... would love to switch bodies with them for an hour. Somehow we have ultra sensitivities in our lungs now. Bad air quality, mild chest cold, even high humidity/air pressure affects me.

The one thing that has helped me above all else... and it's not easy because when you are tired and coughing it's the last thing you want to do but it really does work! Hiking. Anything even with the slightest slope and uphill. This has worked for me more than anything else. Yoga is a close second- and you don't have to do crazy yoga. There is a yoga called Yin yoga which is as hard as you want to be and just stretches. But the breathing exercises in the process help.

Anyhow, my whole reason for being here is that it's really emotionally and mentally helpful to see I am not alone or crazy. This topic thread proves it. So I guess we just have to keep being our own (and each other's advocates).

Hang in there everyone! <3

and Mowwee or anyone else.. if you are finding yourself being paranoid that you are getting another PE, getting the oxymeter really went a long way to give me peace of mind. It's inexpesensive, and most pharmacies will sell them. In the US they range betwee $25 to $85.

https://g.co/kgs/dw2SfH

Hi Mia, you are not coughing up lung tissue or dead lung. It's other mucus and red blood cells etc. We don't want to scare anyone lol. I agree with you about hiking. It has really helped me with my shortness of breath. Iveven do deep breathibg, holding the breath and exhaling to improve my lung capacity. Glad ur feelibg better! Thanks for the advice!😁

I am conveying what my doctor told me when it happened immediately post pe. It was more than just blood/mucus. He's the one that explained that when you have the PE, blood flow is restricted and a part of that albeit small piece of lung that was deprived of blood flow dies. You're body needs to expel it. Of course this would have been nice information to get before it happened as I was not expecting it and happened about an hour after I got home from hospital. I had just had tiny little specks of blood during the hospital stay. This was something different entirely.

Oh how Terrifying! I did not expell any blood or the lije, thank Hod. I had 9 large clots in both lungs and several small ones. "Too mant to count". I will ask my Pulmonologist about dead tissue as he never told me that. some people do create scar tissue which can impede bteathing. I don't have any. But I'm still short of breath and exhausted 9 months later. I think u r right. They really don't know what to tell us.

Terrifying is right when you don’t know why it’s happening. I had had small specks at the hospital but didn’t tell doc about it cause i wanted to go home is badly. Figured it was just irritation from coughing so much. Got home took a bath, had another fit of coughing and 😢. By this point it was midnight, doc was gone they had to page him when I called.  I was petrified. It happens- definitely should go in (which I did) when it happens but it turned out to be normal. Only first two days or so  were  gnarly then went back to just speck of blood for a couple weeks. Until cough (which would happen any time I tried to talk) finally stopped.

Ugh. I feel ya. Hang in there. Seems like the DR.'s should do some research on us! I'd be willing to be a Guinea pig for their study! We need help!