Worrying is common for many survivors. I'd like to say it will pass as time goes on but there are people who even years after the clot still suffer from anxiety (usually around the anniversary of their DVT/PE).

Then on the other hand I know many people who suffered a DVT/PE and treat it like they had a cold - no big deal. These are the people that concern me.

You on the other hand realize what a blood clot can result it. How to manage the anxiety or fear of suffering another one is different for every person. The only thing I can say (and I realize it's easier to say then do) is, don't let the fear consume you. Learn about your medical condition, share with others, and if there is a support group at your hospital - join it. Get involved as a volunteer for an organization like the National Alliance for Thrombosis and Thrombophilia (NATT). They are a group of patients like you.

For me, I got involved in Patient Advocacy. I didn't want another person to go through the disparity in diagnosis that I did. At the same time several years later when my kids were born, I wanted to ensure their quality of life didn't mean they had to fear having a blood clot or becoming a statistic(they have inherited my clotting disorder). Maybe this was my release and how I cope with it, I'm not sure.

Regards,
Tom

I understand how the anxiety can get bad. I will do so well for a while and then some pain will hit, or more hair than usual will shed, and I am anxious again for the day. I do a lot of self-talking----saying things like I will be okay and things like that to calm myself down. This board helps too because I know that other people are going through the same things. I also do a lot of walking-----I feel so much stronger after I walk for a few miles (mentally and physically). I distract myself with other things---my kids activities, doing things with friends, reading, watching baseball/football on tv, etc. The more that I can focus my mind on other things, the less time that I have to fret about any health issue that is bothering me. I pray for strength. I am sorry that this has hit you so young....I am 39 and also feel so young for this to be happening. I took Yaz---probably the culprit, have tested negative for the major clotting disorders, but will get the full testing done in February. My mom had a PE and my uncle had a DVT and apparently my grandmother had some clotting issues---so I'm guessing there is some family tendencies toward clotting.

I am almost 6 months post PE. Physically I feel pretty good. Mentally--most of the time good, but I still have some rough days here and there.

I hope that you are doing well today :)

Nancy

awww bless you - i totally sympathise! i'm 7 months post PE now, and i totally understand what you are saying! I want the 'old me' back too! I feel so gutted that at 23 I'm having to deal with all of this and I just want it to go away...so at 21, I can imagine its even harder!

Everytime i see my doctor, i just say that i wish sooooooo much that this hadn't happened to me...but it has, and she seems to think at the end of the day it will make me a stronger! I know there is that saying - "what doesn't kill you, makes you stronger!"

But i totally see what you are saying, because everyday i think to myself "why me"...i'm jealous of my friends, and can't understand why i have to worry about having another blood clot, when they are just worrying about what to wear on a night out! When i'm out somewhere, i look at people and think - "how come they don't have to deal with all of this crap!"

But hey, its life i guess, and i reckon that my dr is probably right...it probably will make us all stronger as a person - ready to deal with anything life throws at us! My dr keeps saying that i have to embrace the new person that i am, and realise that the illness has helped me develop an emotional maturity beyond my years! I guess, for that, I'm grateful! Yes PE's are rubbish, but after all of that, i now see life completely differently and know that i need to make the most of my life! i realise now, that life really is too short!

I don't know if any of what i said is helpful, but i just wanted to let you know that i totally sympathise...and i just see it that i guess, in a way, us PE survivors are very special, very lucky people! xxx

I SO understand!! I am four months out.... just passed my CT scan last week, but still have moments of fear especially since I have continual pain in my left lung. I even thought to myself.... maybe they called with someone else's CT results??! I am sick of being "sick" and going to doctor's appointments. It has been a very frustrating time in my life and what this has taught me is patience.... it has also taught me WHAT is important in life. We all go through "seasons" in life..... some good and some bad, but this will make YOU a stronger person in the end.

I remember my first few months I was so afraid to even take a bubble bath (thinking I might pass out and no one would find me??!), I didn't like to drive anywhere because I thought "what if" someone hits me and I bleed to death because of the blood thinners. I guess it's all about balance. I have done a ton of research because of my background in sportsmedicine and wanting to learn more about what happened to me....

I know what we experienced was a very serious thing in life! But, I also had to stop reading a lot of literature on the net (and still I have to be careful) because there is a LOT of fear in reading about all the possibilities....
So take one day at a time and remember that we could be dead. We are alive!!

We are now living a new "normal" and I pray that your family and friends will learn to adjust to this time of healing for you. I know that my life was so different (I was extremely active and always on the go.... now I'm lucky to get out of the house for a few hours without being totally wiped out with fatigue) Pulmonary embolism is a silent disease that people can't see (we don't have casts or scars to show what happened to us....so people forget really quick) Hang in there. The most important part is taking care of yourself..... it's great to seek counseling. I have spent more time reading the Bible (especially Psalms) and it gives me comfort! :) Whatever works for you to heal your emotional side! Hold tight to the life you have and let us know how you are progressing. I'm glad you went to the ER and found out everything is ok! God bless!

I do understand your frustration, it has been for months for me as well since I was diagnosed. I however am not as young as you are, I am 47 and it took them more than a year to diagnose my PE.

You feel fragile, you cannot do the things you were use to doing, frustrated and scared that you may get another clot. I go through this everyday. It is okay to vent, we are here to listen.

I have always looked at life as if God has put me here for a reason. When I was almost gone from this world, I thought that my mission was over and god wanted me home.

He saved me to do bigger and better things, you are here to do your big things.

Get frustrated, stop and breath, just take in the moment. Watch some TV, start a hobby that you can work with your hands. I sew, so I get really creative when I am in my frustration mood.

My family would like for me to stay in plastic bubble wrap the rest of my life, but what will they be saving? I still need to breath, love and live life to the fullest. I know you can to.

Lots of love and hugs to you, I hope that you start to feel better, Ida