I had hundreds of PEs in both lungs in 2013. They were undiagnosed for 5 months and could have easily died. Repeatedly was told it was anxiety. After my suggestion, a pulmonary CT was done and a "heavy burden of clots" was discovered. I have been on warfarin since and for life. Last week I asked my respirologist why I continue to have crackles in my right lung. He said it was from scar tissue. With any virus that goes around, my lungs are susceptible. This was news to me, don't get chest pain, but am short of breath if I carry things going up stairs. So that explains that for me. Glad I found this site, although there are not many recent comments.
I understand not recent comments, even me, I have avoided making any. It gets depressing to talk about it sometimes. My boyfriend is getting tired of hearing about it thinking I should just"get over it" and quit being so dramatic. I feel like screw you. You go through it and see how you feel.
I went to the legion hall because I was thinking of joining because my husband died, I am eligible and I need to get a life of my own. But it was so smoky in there my chest started to hurt. I probably won't subject my lungs to the second hand smoke.
According to my Dr my life was saved because the clots landed in my lungs had they gone to my heart or brain I could have died. The lungs were the safest place for them to go even though there they still create quite there own set of problems.
Please don't give up on us. We all have our reasons. And come and go. But we are a very supportive group!!
Linda
Hi canadagal, I thought I would reply as I had what was called by the consultant spectacular amounts of blood clots in both lungs just over a year ago . I am on rivaroxeban for life now too . I had shortness of breath and bad chest pains before , nothing after except a niggly cough sometimes . I have scarring in my lungs and my lung capacity is down to 78% now which is not great . I was lucky to catch it in time and I am glad I found this forum too .
All I would say is congratulations, as it seems we are both relatively lucky , try not to stress too much as on thinners it's highly unlikely to get any more clots and enjoy every day 👍
All the best
James
It's hard to contain but others don't know what your going through and how the thought of death lingers from time to time. Just take care of yourself, do things that make you happy, and be with people who accept you for who you are...
I only had 1 very large PE but for as long as I have been suffering the cough, the pain, the multiple symptoms I think it is very possible I have been suffering thru this for a couple of years and they only found the cause.
I was my husbands caretaker for 25 years so me having coughing Spasams, shortness of breath fatigue, was pretty common for me. Caretakers don't normally take care of themselves. Now that he is gone grime throwing his own clot to his brain. Taking care of me is easier.
Except ( humor now) I think my next support group will be giraffe delivery withdraw as I have been watching April for the last 4 weeks lol
Be safe breath easy
Linda
I am sorry I didn't mean anything bad. I just didn't know. Some discussion groups that I have joined are old and not used much. It's true most people don't care about ones health, cuz they have not had near death experiences like us.
Thank you. Yes I count myself lucky that I am alive, and often thank God that I was diagnosed even if it was 5 months later.
You are indeed lucky having had 1 large clot and still alive to talk about it. I had 100's. I have a CD of CT lung scan, no lie it looked like 2 lit up Christmas trees. For 5 months they told me just anxiety. I tell every doctor who will listen to me, " listen to your patients, they know themselves best."
on old thread but i have to reply.
Same thing happened to me, been told for years ive had anxiety, 4 days ago was diagnosed as having extensive multiplte small clots on both lungs. have had lightheaedness, breathlessness for years.
Drs are too quick to put a lot down to anxiety.
hope youre feeling better.
Shame, we are fortunate to be alive. I am thankful daily that even tho it was 5 months undiagnosed, I was able to be listened to as I suggested it was PEs. Are you on lifetime anticoagulants? I am because they don't know what triggered the amount that I had.
They want to do a few more tests because same as you they don't know what caused them. Was in shock on Monday when I was told, on Fragmin injections twice a day ATM. IT is all a bit scary canadagal. This forum is great for us all to have a chat and share experiences.
Hi looks like I'm new here. Hooe someone us out there on this site. I had multople PE's 9 large, multiple small after a shoukder surgery july 2017. PE's came in September 2017. I'm still short of breath just bending over. My Pulmonolgist says I still have inflamation 7 months later. I wonder if I have scar tissue? I ser him in 2 weeks and will ask. I too suffer from apathy of friends and family. They don't understand. I too feel they think I should " just be over it already". Well I'm NOT OVER IT! A there is virtually no info about this condition from DR.'s or internet. I need to be part of a study or something so i can learn more. The daily wondering about how long will I live, what quality of life will I have, will it get wore, betyer? Is hard to take. Thanks gor being here for me. I'm 53 and not going down without a fight!
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!👍
Hi,
I know this is an old thread but I had a C section it will be 2 years in July, when they did my spinal I got a horrible pain in my right leg and have had pain and cramping ever since. I saw the dr when my boy was 4 months and she said leg was fine and it’s normal to have that after a c section?! When my boy was 6 months I was feeling really anxious and slightly depressed then the symptoms started, dizzyness,palpitations, fast heart beat, sweating shooting pains all over my body etc. I’ve had 3 dimer tests done and all normal but I still experience dizzyness and chest pain and now weird sensations in my shoulder blades sort of dull pain?? Im In mirtrazapine as the dr had put it all down to anxiety?? My leg is still really painful and cramping but no swelling or redness etc. I just feel like it could be blood clots?? Can anyone help or put my mind at rest? Thank you
Hello Sazzle21,
I do not know what a dime test is but if you haven’t gotten a ct scan yet do so ASAP- you are describing the symptoms I had for my PE, shoulder pain being the worst just as I was getting diagnosed (they said it’s referred pain). Unfortunately you have to be your own advocate so if they say you don’t need it, demand it.
I have come on here because i got my PE in 2014 - ever since then I get recurring pressure/ ache / twinges in my lung area - I figured it’s just being now sensitive to air quality or what not. I have an oxymeter which is inexpensive to buy at the pharmacy so always confirm my 02looks normal
The smallest chest cold though now has as turned into a month long recuperation though and this time is the worst - I am exhausted and can easily sleep 15 hrs a day like I did right after PE. It hurts to take a deep breath.i went to doc finally yesterday because after nearly 2 months this can’t be normal. I visualize scar tissue but when i bring they up GP seems dismissive. In researching if that’s a common side effect I found this site.
Blood Tests are negative for PE - combined with good O2 we are skipping CT Scan - getting X-rays tomorrow. Mostly I want to be sure it’s nothing serious before I keep working in cardio - hiking seems to be what helps the most - as long as i am not going to drop dead while trying to improve my lung strength I don’t mind dealing with the pain. It’s comforting that based on these posts my thought that I could be scar tissue is not so crazy. It’s what it feels like- like something is still in there but not sharp like a PE- just residuals causing added sensitivities / discomfort