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.

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kerenza 09/11/2009

I had a massive saddle clot last december and have been told more times than I care to mention just how lucky I am to be alive. After the initial high of actually surviving I started to realise recovery is the hard part. I am still constantly exhausted, every part of me aches. I did have breathing issues before from alveolitis, this has worn off since I rehomed my parrots but I'm still unable to walk more than a few feet.

I'm having wild palpitations and saw a cardiologist a week ago. He was another one who drilled in how lucky I was, said not many survive the size and position of the clot I had. I said I was tired of being dizzy and weak and asked when it would get better, he said that maybe it won't. I have lung damage and he said after 9 months he wouldn't expect them to improve much more if at all. I'm having an echocardiogram next week and he said that he's not expecting to find anything more than the initial damage which they knew about (I thought my heart was actually fine) He can't say if there's any medication I'll have to take until I've had another echo but he's not wanting to see me again until january. Basically I was told to be "sensible" and that was about it. Things are so bad that today I signed an agreement to rent a mobility scooter as it's the only way I'm able to go any distance. Is there anyone else who is still in such a poor way 9 months after the event?

Sorry about the long waffle, I'm just very tired and at this moment unable to see the positive in things. I've tried so so hard to accept I'm lucky to be here but to be blunt I don't actually feel that lucky right now :-(

Karen xx

deleted_user 09/11/2009

Hi Karen,

I'm sorry to hear you are having a rough time of it - I hope you get better!

Never believe a doctor when they say you likely won't improve - I believe anything is possible.

You may have pretty severe lung damage, but you can still improve the capacity of what you have left.

Also, are you on supplemental oxygen? Carrying around an O2 tank is no fun, but you might find it helps you with your mobility and you might decide to use it once in a while.

Take care and I hope you get better.

kerenza 09/11/2009

Hi Themedulla

Thanks for your reply :-) No I'm not on oxygen but seriously considered asking about it. It's hard knowing what symptom belongs where, they are sending me for testing for sleep apnoea and my gp said he thinks I have chronic fatigue syndrome. All this seems to be happening following the damn clot!

Karen xx

deleted_user 09/12/2009

Hi Karen. I am glad you have ordered a scooter. I see this as a very positive step you are taking to continue enjoying this beautiful world, even with your current limitations. At least from your scooter you will be able to enjoy some of the things that you have given up the last 9 months. The exhaustion is such a menacy isn't it?! I am hoping that your clot continues to resolve and that you will not have surgery. Interesting that my cardiologist doesn't want to see me until January unless new symptoms come up. I too have the fast pulse and also iregular heartbeat. He always tells me how lucky I am to be alive with the large clots in both pulmonary arteries. If not better by then, I too am a candidate for surgery. In the last 3 weeks, I have started to improve beyond expectations. I am now walking daily with my heartbeat staying below a 100. It was really remarkable how poorly I was doing one day, and how much better I was doing a week later. Hoping the same for you, but please get the scooter so you can enjoy more things in the meantime. I pray and hope that you will start getting some relief from this mess soon! Take care and please let us know your progress.

deleted_user 09/12/2009

Kerenza, I was diagnosed with chronic fatigue syndrome and fibromyalgia about 9 months after my PE. That is the kind od event that sets it off. I think there are a lot of people who may dfvelop it after PE. I was not willing to accept that this is how life would be - the quality was crappy. I do still need the extra sleep, but a year later -and some alternative medicine -I am finally feeling better. If you have chronic fatigue and haven't yet read the book "From Fatigued to Fantastic," you should. The doctor who wrote it has CFS and Fibro. He has now opened centers across the USA -pricey-cash only basis -but a lot of what they do is in the book. It includes finding the reasons that may be contributing to your exhaustion and fixing them. They address nutrition, sleep, hormone inbalances, and any low lying infections that may be going on. A lot of supplements and possibly massage therapy, accupuncture and other alternative therapies -you kind of have to see what works for you. It sounds to me like you still need some traditional medical tending to though. I don't know why, but my doctor wouldn't look into my exhaustion until about 9 monyhs post PE. What's up with that. They really ought to tell people they are not going to feel beter for a long time possibly when you leave the hospital. I hope you find what makes you feel better out there. Also-I did a breathing class called Buteyko Breathing-you can google it -I know there are instructors where you live. It may make your breathing better. Blessings, Teri

kerenza 09/12/2009

Hi Richard

I'm still getting my head round the whole scooter thing, I guess I just hate the idea of actually needing one but I'm sure it'll work out fine. I'm so pleased you're recovering well, I truly hope it keeps going for you!!

Thanks so much for all the info Teri, I will definitely be googling what you've said :-) I'm getting a hard time from my parents who are convinced I just need to "try harder" and they are dead against a scooter. I'm so pleased you found things that work for you *hugs*

Karen xx

deleted_user 09/13/2009

Oh Karen, I'm so sorry to see that you're feeling so sad. As you know, I understand your pain in many ways. I am now 18 months post PE, and am still struggling in many ways. I am tachycardic almost constantly, and like you, struggle to walk any distance and up a flight of stairs! I really feel for you, I really do...and totally agree with you when you say that you don't feel lucky right now! Like you, I have been told many times that I'm very lucky to be alive...which of course, is amazing in many ways...but it's hard to feel so lucky when you still feel so poorly hey!?

I know you have serious issues about getting a scooter, all of which I totally understand...but if it helps you to start living your life again, then I guess it's worth it hey!?

Lots of love x x x

deleted_user 09/16/2009

Hi Kerenza,
Have you tried racing your scooter yet? :-)
I hope all goes well with your echo this week - in the least please enjoy the amazingly cool images the machine can take - how many people get to see their own heart beating and in such detail!!!???
Pip

kerenza 09/16/2009

Lol I was actually enjoying the echo till the sound came on and I almost jumped through the roof! It's truly amazing how a machine can see into our body like that!
I get the scooter in another month, I did get a trailer today though and we're going away for a weekend at halloween so the scooter will be coming too. If you hear of a mad woman tearing up and down Mablethorpe beach on a souped up mobility scooter then it's yours truly :o) Hope you're all doing well and ty so much for the good wishes

Karen xxx

deleted_user 09/17/2009

Hello Karen,
Have you asked your Dr. about O2. I take mine everywhere I go.
And Everyone goes out of there way to be helpful when i have my O2.
So go for the scooter, because life should be enjoyed, and as I have found out everyone goes out of there way to be nice and helpful when I use them.
Good luck,
Kathy

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