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
Have seen lots of 'Newbies' here recently and as well old friends who have supported me and answered loads of my questions and stopped my going totally crazy!
As it is 2 years to the day since I was diagonsed with extensive mutiple bilateral PE's I thought both for my own benefit and for those here and just joined that I would do a bit of an update on how things are going.
Looking back and with the help of this site I now know that much of what I was going through both mentally and phsically was entirely 'Normal'! It was something I moaned about the so called experts but with hindsight have come to accept as they have never lived with it themselves-lucky them.
So mentally now the horrible torn between 'lucky to be alive and 'why me' has moved to why not me and yeah I am so lucky to be here especially when I hear stories of those that were never given that chance. So I have come out of it kinda sane lol
Physically I cant say I am 100% as I have some persisting chest pain that which (after lots of guess work from the Docs) has been put done to scar tissue-what a surprise! It took a long time to sort out effective pain relief but mostly we are there. I also still get tired and sometimes breathless but have made some life style changes to work around it rather moan about things I can and cant do. It has given me a really good incentive to lose some weight and I must say I am so proud of myself for doing so!
I am back at work (nearly full time) but as a nurse in a really demanding area this has probably taken longer than most.
One frustration has been that they have no reason for my PEs and this has taken some accepting. Its mostly for my family that I would like some answers but also for deciding long term treatment. I did lots of research and am lucky enough to come under a thrombosis centre so feel I am getting the most up to date information.
For now I am staying on warfarin as I had an unprovoked episode (no Reversible cause) and the latest recommendations are that unless there are other health issues long term warfarin outways the risks of side effects. To help me come to terms with this I have said I will take part in some new research when it starts in my local centre. It will maybe one day help either me or my family so why not?
I also know that there are other new drugs in the pipeline and follow these with interest. Hopefully there will come a day when there will be no dreaded INR testing.
So here I am at 2 years with a few mixed emotions. Mostly I am truely grateful for being here and as well as I am. There are days when I get frustrated at what I cant do but these are few.
I guess my message for all but especially the new people is that hang to what these guys here say as there are none so expert as those who have been there and done it! There are some things that you have to accept, but research all that you can.
So all the best to you all and thanks again to my friends who have given me so much support
Kate xx
Have seen lots of 'Newbies' here recently and as well old friends who have supported me and answered loads of my questions and stopped my going totally crazy!
As it is 2 years to the day since I was diagonsed with extensive mutiple bilateral PE's I thought both for my own benefit and for those here and just joined that I would do a bit of an update on how things are going.
Looking back and with the help of this site I now know that much of what I was going through both mentally and phsically was entirely 'Normal'! It was something I moaned about the so called experts but with hindsight have come to accept as they have never lived with it themselves-lucky them.
So mentally now the horrible torn between 'lucky to be alive and 'why me' has moved to why not me and yeah I am so lucky to be here especially when I hear stories of those that were never given that chance. So I have come out of it kinda sane lol
Physically I cant say I am 100% as I have some persisting chest pain that which (after lots of guess work from the Docs) has been put done to scar tissue-what a surprise! It took a long time to sort out effective pain relief but mostly we are there. I also still get tired and sometimes breathless but have made some life style changes to work around it rather moan about things I can and cant do. It has given me a really good incentive to lose some weight and I must say I am so proud of myself for doing so!
I am back at work (nearly full time) but as a nurse in a really demanding area this has probably taken longer than most.
One frustration has been that they have no reason for my PEs and this has taken some accepting. Its mostly for my family that I would like some answers but also for deciding long term treatment. I did lots of research and am lucky enough to come under a thrombosis centre so feel I am getting the most up to date information.
For now I am staying on warfarin as I had an unprovoked episode (no Reversible cause) and the latest recommendations are that unless there are other health issues long term warfarin outways the risks of side effects. To help me come to terms with this I have said I will take part in some new research when it starts in my local centre. It will maybe one day help either me or my family so why not?
I also know that there are other new drugs in the pipeline and follow these with interest. Hopefully there will come a day when there will be no dreaded INR testing.
So here I am at 2 years with a few mixed emotions. Mostly I am truely grateful for being here and as well as I am. There are days when I get frustrated at what I cant do but these are few.
I guess my message for all but especially the new people is that hang to what these guys here say as there are none so expert as those who have been there and done it! There are some things that you have to accept, but research all that you can.
So all the best to you all and thanks again to my friends who have given me so much support
Kate xx
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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.
My case was a little unusual because it seems like the dratted little clots had been building up in my lungs for 12 months or more before anyone realised why I was so breathless! This has caused me to now have a rare condition called pulmonary hypertension.
When I was first diagnosed I was absolutely terrified because I "googled" it and decided that I would never have the energy to go back to work and probably would have to take early retirement and I definitely thought that my 7 hour flights to see my son and his family would never happen again!
I'm glad to say that I was wrong on both counts.
Once diagnosed and successfully treated with tablets to help the blood flow ( oh go on then - I admit it - viagra !!!)I returned to work just over a year ago and am proud to say that I haven't had a day off sick since! I've also flown out to stay with my son and play with my gorgeous granddaughter twice in the last 12 months and have also celebrated my 60th birthday in Amsterdam!
Like Kate said - I still get breathless on exertion so I just take things a little slower than I used to do. There are very few things that I can't do but lots of times when I have to do things differently. So - to all you "newbies" - my advice would be to be kind to yourself. Take the opportunity to rest more, listen to your body more and try to be patient while your body heals itself. Don't ever give up hope that you'll eventually feel well again and always remember that we are survivors - yeah !!!
Take care - love Sandi xx
Despite this extraordinary event we faced, we can live wonderful, hopeful, happy lives.
It takes time - be kind to yourself
Allow the grief, anger, shock and deal with it in a way that's right for you - I went for counselling for a short time I think it helped but also realise now that the anxiety was a physical response to the trauma.
Not to apologise - being informed is empowering and I wished I'd challenged more on some of the responses I got from Drs at the time who were puzzled why I wasn't up and back at it 6 weeks post PE.
Totally agree with Kate and pleased to read the updates - keep well
Sue.
I think the hardest obstacle living with PE's has been trying to figure out how to go about what used to be normal routines. For example before I wouldn't have thought twice about going to the dentist or even going in for a simple colonoscopy. Now all these other factors have to be weighed into the equation, like is this one of those instances that I need to be bridged with lovenox? I talked to one of the surgeons yesterday about possible back surgery for moderate to severe stenosis and he suggested I get a filter placed before we even think about it. Only problem is like you I have unexplained clots that are not DVT or pelvic caused, so where would they place the filter? We came to the conclusion it would be placed between my heart and lungs. That way I could be off the Coumadin for about 4-5 days without to much risk, Only other thing is I would have to be in critical care so they could monitor me. LOL and that presents another problem. Do I really want to give my co-workers the opportunity to get back at me? And some of them NO WAY do I want them to see me nekkid LOL. OH well decisions, decisions.
Once again good to hear from you and try not to be such a stranger.
Hugs
Ferr