Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hi all
Sorry for another moan but feeling really down at the moment and I know there are people here that will understand a whole lot more than my family and friends do. Although they do try bless them!
I had my PE March 2008 and had been doing fairly well although it took a long thime to get there. Then in Feb this year I had a couple of episodes of really bad lung pain which they have not found a reason for despite spending time in hospital twice. They can tell me what it is NOT- Pe Gallstones etc ruled out. They say there is decreased air entry in that area and it does seem to get worse when I walk any distance so I am convinced it is a lung based problem.
It is just so frustrating. If I had an answer I could adjust my life around managing the pain but at the moment feel like I am going nowhere- literally!
My sister is in Canada and has offered to use her airmiles to pay for a flight for me this summer. I have a 2 year old nephew there that I havent even seen yet! I am not so worried from the PE aspect I know I can be covered with Clexane. Just soooo worried if I get the pain/anxiety etc half way across the atlantic!Has anyone got any experience with any airlines so that I can get some reasurance before hand.
Also this summer I want to help out with my sisters family here when my niece has a scheduled caesarian in July. She also has a very active 2 year old who is adorable and I would love to have him while she is in hospital.
What is making me so miserable is that I cant plan one bit of my life at the moment. Dont even know how I am going to be from day to day let alone in a few months. Have always hated to be one to let anybody down so cant promise them anything. Sooo frustrating. Am trying to be positive and get on with things as much as I can but this uncertainty is so hard to live with.
Sorry for the moan folks. I feel a bit better for it already! Hope everyone is ok
Kate x
Sorry for another moan but feeling really down at the moment and I know there are people here that will understand a whole lot more than my family and friends do. Although they do try bless them!
I had my PE March 2008 and had been doing fairly well although it took a long thime to get there. Then in Feb this year I had a couple of episodes of really bad lung pain which they have not found a reason for despite spending time in hospital twice. They can tell me what it is NOT- Pe Gallstones etc ruled out. They say there is decreased air entry in that area and it does seem to get worse when I walk any distance so I am convinced it is a lung based problem.
It is just so frustrating. If I had an answer I could adjust my life around managing the pain but at the moment feel like I am going nowhere- literally!
My sister is in Canada and has offered to use her airmiles to pay for a flight for me this summer. I have a 2 year old nephew there that I havent even seen yet! I am not so worried from the PE aspect I know I can be covered with Clexane. Just soooo worried if I get the pain/anxiety etc half way across the atlantic!Has anyone got any experience with any airlines so that I can get some reasurance before hand.
Also this summer I want to help out with my sisters family here when my niece has a scheduled caesarian in July. She also has a very active 2 year old who is adorable and I would love to have him while she is in hospital.
What is making me so miserable is that I cant plan one bit of my life at the moment. Dont even know how I am going to be from day to day let alone in a few months. Have always hated to be one to let anybody down so cant promise them anything. Sooo frustrating. Am trying to be positive and get on with things as much as I can but this uncertainty is so hard to live with.
Sorry for the moan folks. I feel a bit better for it already! Hope everyone is ok
Kate x
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
As you know, we had our PEs around the same time...like you, i still sturggle with pain in my chest and can't walk any distance. I have also now been told that i have some "abnormalities" with my heart and am waiting to see a Cardiologist.
I went to see my GP last week as i too, am totally fed up! I agree with you, it's hard to make any plans and i never know what is going to happen day to day. I'm constantly waiting for 'something'...i'm not even sure what most of the time! i guess i'm just waiting, and desperately hoping someone will come and fix me soon! Everyday i wait for th post (sad i know!), in the hope that the Cardiologist will of sent me an appointment...and everyday i am dissappointed! This time last year, i would never of imagined that i'd still be stressing over stupid PEs...and i agree with you, that it'd be nice to move on and get on with my life! I know they say that the recovery period is very long and drawn out - but i really hoped that over a year on i'd be all better!
I don't know if any of that helped - but what i am trying to say is that i agree with you totally, and i very much hope that we are both able to move on, in one way or another, very very very soon!
x x x
Sun's shining,spring is here (so are we) here's hoping we all feel well enough soon to enjoy it. I'm so glad I found this site, you guys are all great xx
p.s. I don't think anyone who has had a PE is ever "the same" again.
Then it came to a point where I had to embrace acceptance. I just accepted that this is who I am, this is what happened to me. I can't change any of it, but I can choose how I want to live each day. I accepted that no one knows for sure why I clot and that I may never know. I accepted that I may get another clot at some point and if I do, I accepted that I must take what that brings. I also accepted that I am a mortal being. I'm going to die, from something, at some point. Could be a clot, but it could be from a billion other things too. If I didn't accept this, I might as well have thrown myself of the nearest roof right then and there. Because it is no life to live in constant fear.
Flipperclot is right; we are never the same again. But that can be an opportunity if you allow it.
You have to kind of go through the process of mourning, almost. It's ok to let it happen. You will find your way through this.
We continue to be works in progress. I think that makes each of our lives kind of beautiful.
PE is a tough one to swallow...some do it well and others need a lot of support like myself .
I had my PEs in November 2008 and I still have what I term bad air days . It is hard to stay positive every minute of the day and lets face it, PEs are scarey creatures to live with .
Some days you sail through it and some days the water gets a little rough .I have days or hours where I just cry and worry if this will be my last and days where I say whatever wil be will be .
I would liken being a PE survivor to roller coaster.Sometimes I wish that my family and friend really did get it (what its like to be a PE survivor) and all the thoughts and emotions that we go through .
Its like being pregnant and having a baby...if youve never gone through labor and pushed that baby out you dont know how it feels and theres no way of adequetly describing it .
Thats why this forum is sooooooo important !
Big hugs to you and lots of comforting vibes .
Two considerations are the thinner oxygen (equivalent of 10000 ft or 3050m), the other being an elevated clot hazard while in flight.
As long as you are anticoagulated you are protected from forming new clots, though it would be a good idea to get up and move about when possible. Wear compression socks. I looked it up and you cannot go somewhere nearby that is 3050m high to test your response, though Ben Nevis reaches 1344m. Maybe you can travel to Ben Nevis and do jumping jacks at the summit and see how it goes.
More reasonably, I believe it came out that British Airways can arrange oxygen in flight, or provides advice to physicians as shown at http://www.britishairways.com/health/docs/before/airtravel_guide.pdf .
My layman's belief is that if you are fit enough for brisk walking then you could probably stand the drop of sealevel-equivalent oxygen from 21% to 17% as would happen on a flight.
I had reason to believe that my original clot formed on a flight, as described at http://www.airhealth.org/athletes.html . However, making the preparations and getting back on that horse was a major part of getting through the first year's recovery.
Sorry to hear you're so down. I have read some of the replies on here and they have helped me a lot and I agree with them - one day you will find a way of dealing with it, but that day will come once you have a few less hospital appointmnts etc., as they bringit all back again.
I have had some counselling and my counsellor said that I had not grieved for what happened to me - I thought, well, I have done nothing but cry for the past year, but then Jade Goody died and I cried non stop for two days. I liked Jade, but not to teh crazy amounts I was crying so I know her death was like a trigger for me to let my own grief about my own health out. In a way, the counsellor gave me permission to do this, by pointing it out - may be you need to grieve for your losses - may be it is the right time to get some counselling too. I am a therapist and thought I could sort myself out and I have a lot of therapy friends, but I needed someone on the outside to listen.
Also grief-wise, there are 5 stages according to Kubler Ross, and I find it helpful to acknowledge which stage I am in - you can go through them more than once, in any order, and you can get stuck in one. It is helpful to think which one am I stuck in and how can I find a way to get out of it?
They are:
Denial
Despair
Anger
Bargaining
Acceptance
Each one can mean something different to each of us. I have been in despair and anger a lot. Then I did a bit of bargaining, i.e. if I do this then I won't get this....etc. I have been in denial less frequently (I think my Dr is more in this stage - lol) and I am moving on to acceptance.
Acceptance will come for you - we will all help you get there. Print off some off the positive posts on here and read them when you're feeling low. I have some in my bag.
Take Care
Love Dawn x x
xx x x
Many many thanks to you all, it so helps that people understand.
I really thought I was coming to terms with it all when I got the pain again and it was like a real slap in the face. Knocked my confidence so much.
Thanks for all the advice and the web sites. Did consider the jumping off Ben Nevis thing but the temptation off a short trip to Paris or somewhere sounds just a little more inviting!
It starting to get me a little angry now in that I was letting it beat me.So going to do all the research I can and go for it if at all possible.
Kerenza says this reminds her of the airplane film where every one is queing to slap an hysterical woman around the face. This made me laugh so much. Hope it doesnt come to that!
As for making plans it is like Dawn says I have to accept that they wont always happen and if that means letting someone down accept that is not my fault. The important people in my life will understand I am sure!
So once again cos of all you lovely people I am feeling a whole lot better and WILL beat this
Take care
Kate xx