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.
Well it's been 18 months since my saddle embolism so I thought I'd say hello again. I've been reading the boards but haven't posted as much as I used to. This place was and still is a godsend to me but the fear has finally subsided and I don't need to constantly reassure myself that it won't happen again.
Recovery wise (physically) it's been very frustrating. I get a lot of erratic heartbeats, I've had numerous tests and my cardiologist is happy that they've all come back ok. He says I have significant irregular beats but he can't find any reason for them. I guess basically my heart was under such strain when I had the clot (it was massive and blocked almost most of both pulmonary arteries) that it was weakened. I'm down to 6 monthly visits now rather than every 2 months. I had breathing tests which were okish, I still get very breathless and lightheaded when I do anything physical but I'm learning to live with it. We are moving to a bungalow in the next 4 weeks as at the moment I'm in an upstairs flat and not coping with the stairs at all. I've also been diagnosed with chronic fatigue syndrome. My lungs were already damaged from alveolitis (bird fanciers lung) so the clot did me no favours.
It has been a long road but I am no longer depressed about things, I have a mobility scooter which has given me heaps of freedom, I have my gorgeous animals and I'm alive! For a long time I was angry/sad and wondering "why me" I have prothrombin mutation factor II, I inherited it from my mum but luckily my sister doesn't have it.
I thought that with time I would be back to normal, how I was before the clot. Now I realise that's not going to happen and you know what? It's ok! I know many of us will go on to a full recovery but for those like me I hope you reach your own point of acceptance and see that life can be just as good as before, just in different ways
Karen xxx
Recovery wise (physically) it's been very frustrating. I get a lot of erratic heartbeats, I've had numerous tests and my cardiologist is happy that they've all come back ok. He says I have significant irregular beats but he can't find any reason for them. I guess basically my heart was under such strain when I had the clot (it was massive and blocked almost most of both pulmonary arteries) that it was weakened. I'm down to 6 monthly visits now rather than every 2 months. I had breathing tests which were okish, I still get very breathless and lightheaded when I do anything physical but I'm learning to live with it. We are moving to a bungalow in the next 4 weeks as at the moment I'm in an upstairs flat and not coping with the stairs at all. I've also been diagnosed with chronic fatigue syndrome. My lungs were already damaged from alveolitis (bird fanciers lung) so the clot did me no favours.
It has been a long road but I am no longer depressed about things, I have a mobility scooter which has given me heaps of freedom, I have my gorgeous animals and I'm alive! For a long time I was angry/sad and wondering "why me" I have prothrombin mutation factor II, I inherited it from my mum but luckily my sister doesn't have it.
I thought that with time I would be back to normal, how I was before the clot. Now I realise that's not going to happen and you know what? It's ok! I know many of us will go on to a full recovery but for those like me I hope you reach your own point of acceptance and see that life can be just as good as before, just in different ways
Karen xxx
As you probably know I was diagnosed with pulmonary hypertension following the PEs because the clots had been building up undiscovered for over 12 months! This had damaged some of the smaller blood vessels in my lungs as well as the clots becoming embedded in some others.
I was absolutely terrified and thought that I would have to take early retirement and I was sure that I wouldn't be allowed any more 7 hour flights to visit my son.
Well I'm really happy to say that now that I'm on the right medication (which helps to open up the blood vessels - ok - yes - its viagra!!!) I have been back at work for 16 months now without a day off sick! I've flown to Dubai twice (but have to arrange in-flight oxygen) and also flew to Amsterdam for my birthday last September. Last weekend we had a couple of nights in London and I wouldn't have even considered sightseeing this time last year.
I don't rush round any more - I do things at my own speed and if I need to stop to catch my breath then that's what I do. Like you say - its all a case of accepting the new normal instead of wishing that things could go back to the way they used to be.
I still don't know why I got the clots but I'm not obsessed with finding out now either. I'm on warfarin for life so it doesn't really make any difference and luckily for me I don't seem to suffer any of the side effects that are so often mentioned on here. Since this happened it's amazing how many times I've heard about or read about someone who didn't make it so I'm just grateful that I'm still here, leading a more or less normal life and eagerly awaiting the birth of my second grandchild due in the next couple of weeks.
Good luck to all you newbies - look after yourselves and be kind to yourselves. You'll get over it all too but some of us take longer than others xxxx
It's really great to hear you're able to do so many things. Loving the viagra ;-) I do have a few side effects with the warfarin but I am more than happy to be a lifer on it.
I remember my first days on here, I used to read posts from people who were over a year post PE and I would wonder if I would make it there. Now I'm seeing lots of new people come along which is sad that they are suffering but I'm glad they found this amazing support group.
So are there any other "oldies" out there who want to update and let us know how you're doing now? I'm just nosy and curious to see how differently our bodies (and minds) cope with these clots.
Karen xxx
Just coming up to my 3 year anniversary, I am warfarin indefinitely but fortunately have had no lasting effects from my second multiple bi-lateral PE. I think it's worth posting because like Kerenza says I remember avidly searching for any scrap of news that helped me think life could ever be normal again. The biggest lesson I learned was that you have to give yourself time and to allow yourself the range of emotion that come as part and parcel of this - small steps still take you on the journey back to better health. Take care x
I'm not quite a year out from massive multiple PE and lung infarction. I am 6 months post warfarin/coumadin. Life has definitely returned to normal. I take my aspirin and vitamin e regime, and I do things at my own pace. I too have now traveled a bunch with no issues, and I've done activities like hiking and snow shoeing. I do get fatigued more easily then before PE, but I take it all in stride. I love not having any of the awful wafarin side effects! Losing so much weight and hair and memory was so rough. I was very depressed in the beginning and even anxious though i'm not an anxious person. I just chose to work through it on my own and I'm glad I did. I'm really enjoying life again and grateful to be alive. We're all survivors and heal in our own ways. It's strange to say but my PE was a blessing. I no longer want to waste time with unimportant things. I want to enjoy each day and take nothing for granted.
Wishing you all well in your post PE lives.
"Getting back to normal" has been my goal for two years, and I guess I need to realize that wont' happen. But I'm incredibly blessed, and I need to enjoy my new life. Thanks again and congrats on your recovery. (And good luck in the move :)