Pulmonary Embolism Support Group

no, for me it was birth control pills. they cause blood clots. i didn't know u can get it from an auto immune disease. i was coumadin for several months as well. i got off a few months ago. it.s had not knowing what u can and can't eat. i did some research to get to know this illness. i would eat healthier and avoid certain vegetables or foods in general that had high vitamin k. i also did tai chi for exercising to help reduce stress. stay healthy, strong, and positive. u will be just fine. my blood levels will rise and fall too. but just keep taking the meds and get checked.

Hello. I'm very happy that you're OK after that terrible ordeal, you've definitely come to a good place -- these people have been amazing in helping me deal with my bilateral, multiple PEs (which occurred back in October). I had my PEs for a week before I was finally hospitalized.

I've personally used this site mostly for encouragement. It is common to be depressed after what we've gone through, for me it was scary to know that I almost died at 21, upsetting to feel like I was a "sick person", and frustrating to still be experiencing those symptoms that you mentioned. Most of all, it seems to take over your life... the blood tests, doctor appointments, things you can't eat and do while you're on coumadin. But you need to remember that you have survived, and that's a feat in itself. You're receiving treatment now, you're safe and your doctors will take care of you.

Everyone's different but if you want to know what to expect, the SOB will go away but it may take some time (mine was almost completely gone 7 months post-PE). The constant chest pain lasted maybe a month, the fatigue didn't go away until I finally came off warfarin 2 weeks ago. One thing that I have noticed is that sometimes I still get this chest pain that comes and goes quickly. I think others on the forum have mentioned experiencing the same.

My PEs were not due to an autoimmune disease, they were due to a genetic blood clotting disorder (known as Factor V Leiden) with a mixture of birth control pills and sitting around too much studying for midterms. However, it is possible for autoimmune disorders to react with the proteins that form clots. You could try Googling "autoimmune disorders AND blood clots" and see what you get.

I have seen a hematologist for diagnosis, it took them 3 months to figure it out. She also referred me for tests to check for related damage to my lungs. I absolutely think you should see a hematologist as they are supposed to be experts in all things blood... and if they don't know they will be able to refer you to other specialists.

Good luck, I hope you start feeling better soon.

thanks, in fact. the doctor let me stop the meds a few months ago. i'm doing better. i even had my gallbladder removed a few months later after this incident. but still, i'm doing it one step at a time.

Thank you for all of you help and support! This has not been easy and because people look at me and say "well, you look ok" they think you are all well. As for the weight gain I believe I'm eating more because of the depression. I also seem to still be carrying some swelling. So I really need to get that under control...LOL

I have the name of hematologist and I hope to get an appointment within the next 2 weeks. I'm waiting on the results of the CT of my lungs, however the Dr said that she needed to discuss it with me and moved my appoint up to next week. Needless to say, I am a bit unnerved. Oh well, I can't do anything about it right now, so I am trying my best not to worry.

I was told that this recovery was going to take a while, but I was thinking in terms of weeks...not months...ugh

i'm felt the same way. although time did fly by rather fast, if you keep busy. take it slow. i usually go for short walks like around the block or something. or buy a tai chi tape for stress relief by daisy lee garripoli and her husband. it is very calming. for weight control, i'm trying to eat six small meals a day to increase my metabolism. for example - breafast, mid morning snack, lunch, afternoon snack, dinner, and bed time snack. eating every few hours helps and drinking 6- 8 glasses of water is good for your body and teeth. and exercising a few times a week and then rest to give your body time to adjust from the exercises you do. but take it really slow.

Hi 3rules. I also just had a PE about a month ago and not sure exactly what cause it but it might have been birth control. I'm going to a hemotologist next week. I took 10 days to become therapeutic but was in the hospital on heparin that whole time. I'm mostly just exhausted. I'm sure I would have had weight gain and depression but I'm on zoloft already from lingering ppd.
I know exactly what you mean about people thinking you look fine so you must be fine. My husband doesn't have a clue how tired I am. I'm a stay at home mom to two year old twins and he's been working 12 hours a day since I got home (and he's salaried). *sigh* Glad I found this group...

i went undiagnosed for over 2 weeks too. i just thought i was extra tired from working out extra hard (running and swimming endurance training).

i can relate to the frustrations. i am only 7 days out of hospital and see no improvement at all in terms of exhaustion and SOB.

try to find something positive to think about and set yourself some short-term goals either related to this or something else in life that you have control of. little victories will make you feel better and give you confidence..

and remember that many die from this, so being alive in itself is a victory to be celebrated..

Jenn

3Rules, My PE's we're caused from A-Fib of the left ventricle of my heart. OK that was a trip to hear. It took the doctors lots of tests and lots of misdiagnosis and lots of frustrations on my part and my doctors parts to figure me out. My first PE was way back in 2005 and they just now figured out the causes (They think) But I am here after 4 separate episodes of multiple PE's. What we all have in common is we are survivors. Yes depression sets in along with the emotional roller coaster ride that we're on just trying to wrap our minds around our ordeals. The shortness of breath does eventually go away then comes back then goes away again, depending on your condition and how long it takes for you to heal. Your physical activities decline then you will eventually get back to a somewhat normal state. I am back to working full time after my last hospitalization back in February. The thing is you just have to keep your chin up and keep reminding yourself that the people who think you look fine really don't have a clue. LOL I always tell my friends and family "I look good on the outside but on the inside I'm a train wreck" Take care and remember your never alone on this journey that we're all on together. Someone will always be here for you.
Hugs
Ferr

Hey I found out several weeks after I got out of the hospital that I have the auto immune disease Lupus Anitcoagulant Syndrome. It's a blood clotting disease. That might have played a part in causing my PE's. I was also on birth control pills that I will never be able to take again. I see a hematologist that is very good and he was the one that found the auto immune disease. Have you seen a hematologist yet? If not you should. He came to see me several times in the hospital and told me to see him when I got of the hospital so I did. I'm sorry you are going through this and it took me a while to be diagnosed too. The ER told me to go home and I felt so stupid cause I knew something was wrong. Welcome to our group. You will find much support here!

thanks, i'm better now. i think i saw a hematologist in the hospital, i don't remeber going to see one. if i did, he wasn't all that great for me to remember.