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.
Ok I have been reading several posts on DS today and noticed we have several newbies posting right now. Welcome to our weird little roller coaster ride from Hell, yes it is an emotional roller coaster (normal), lots of us even those of us who had PE's years ago suffer from anxiety and need counselling or medication (normal), some of us are in denial (not normal but I'm in denial anyway). Some of us have developed other health care issues after having the PE's (normal), most of us old timers have gotten on with our lives (normal). We have kind of adopted the mantra not when are we going to be back to normal but when are we gonna let ourselves be normal again. Our diets are now foremost in our minds (normal) and we have totally cut vitamin K out of the diet (not normal) the experts recommend you continue your normal eating habits and adjust your Coumadin to your diet. Each one of us has taken different amounts of time to heal (normal) I think it all depends on the severity of the clotting event and our bodies ability to heal itself. Does it take time? Of course it does. Do other people make you feel like a total ass because your still hung up on the fact you could have died? Of course they do. Will they ever understand? Hell no they wont understand they haven't been through it. Do the Doctors whom you trust your life in their hands understand? Well some of them do and sometimes we have to give them a swift kick in the ass to make them pay attention. One of the things you will hear a lot of from the old timers on this blog is you have to be your own best advocate. So right now stop taking a back seat in your health care and move to the front of the line. Not just about your PE's or DVT's but about your health care period. Many of us have had several other medical problems after PE's and we found out the hard way that the squeaky wheel gets the most grease, In sorts we kind of paved the way for some of you, please learn from our lessons. We have finally stood up and said enough is enough, I want some answers and I want them now. I myself have had several surgeries after my first PE episode and have learned how to bridge off Coumadin and back again. I have learned when to back off too. I have learned how to know when I feel as if I have had another PE just by the way I feel. Your going to hear several of us mention that "feeling of dread" that does accompany the PE or DVT, listen to your body and your instincts. OK I'm gonna stop here as I know my good friends like RMB and TnT will also add some great advice. Best of luck to you newbies and remember Rome wasn't built in a day, your INR isn't gonna change in a day and yes you can have a normal life. And don't every feel alone as long as you have friends here on DS and don't be afraid to ask questions. knowledge is power!
Hugs
ferr
Hugs
ferr
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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.
In the early days of my PE recovery, I would have such intense feelings and thought I was having another PE. It happened a lot. Then when I understood that most of those feelings were anxiety related, a lot of my anxiety went away, or I was able to distinguish what I was feeling. Here's a list of common anxiety symptoms: This is from http://www.livingwithanxiety.com/anxiety-physical-symptoms.htm:
-- Palpitations (Heart Beating Hard and/or Fast or Pounding)
Heartbeat sensations that involve a regular or irregular pounding of the heart. It is a conscious, unpleasant awareness of one's own heartbeat, or a sensation of skipped or stopped beats. Palpitations can be felt in the chest, throat, or neck. Palpitations may be felt accompanying emotions such as excitement or fright. Everyone experiences palpitations at some time in life. Pounding of the heart, brought on by strenuous exercise or strong emotions, is rarely associated with serious disease.
-- Sweating - Perspiration
In most cases, sweating is perfectly natural, especially when exercising, or hot, or if something has happened to cause an emotional response (being angry, embarrassed, nervous, afraid, or anxious).
-- Trembling or Shaking
Trembling or shaking can be associated with fatigue, stress, anxiety, anger, or rage. However, a constant tremor that is not associated with altered emotional states may be a sign of disease or a abnormal condition and should be evaluated.
-- Shortness of Breath - Breathlessness - Difficulty Breathing
A sensation of difficult or uncomfortable breathing, or a feeling of not getting enough air. If the brain, muscles, or other body organs do not receive enough oxygen, a sense of breathlessness may occur. Sometimes emotional distress, such as anxiety, can lead to difficulty breathing.
-- Difficulty Swallowing
The sensation that food is stuck in the throat or upper abdomen. This may be felt high in the neck or lower down, behind the breastbone (sternum). Sometimes emotional distress, such as anxiety, can lead to difficulty swallowing.
-- Sharp Pains in the Chest or Chest Discomfort
When faced with unexpected chest pain, it is normal for people to fear the worst because chest pain is a symptom to which many people think "heart attack." Nevertheless, chest pain can have many causes unrelated to the heart. Sometimes being caused by a panic-anxiety attack.
-- Abdominal Pain - Stomach Pain
Abdominal pain is a nonspecific symptom that may be associated with a multitude of conditions such as anxiety or strong emotions. Some symptoms do not occur within the abdomen itself, but cause abdominal discomfort.
-- Nausea and Vomiting
Nausea and vomiting are controlled by the central nervous system. Nausea is controlled by a part of the nervous system that controls involuntary bodily functions. Vomiting is a reflex controlled by a vomiting center in the brain. Vomiting can be stimulated by various triggers, such as smell, taste, anxiety, pain, motion, changes in the body caused by inflammation, poor blood flow, or irritation.
-- Dizziness - Lightheadedness - Faintness
Dizziness is a feeling of faintness or light-headedness, making it difficult to maintain balance while standing or sitting. A persistent light-headed feeling without other symptoms is often due to anxiety, rather than a brain tumor or other hidden disease. If it is severe, some anti-anxiety medications can help treat light-headedness and dizziness.
-- Hot or Cold Flashes
A short lasting feeling of "warm or cool" sensations in the upper body. Sometimes emotional distress, such as anxiety, can lead to hot or cold flashes.
Anyway, be strong if you can and come here often to listen to some really good advice.
Thanks Again
I went to an acupuncture treatment yesterday (first one since PE, trying to address the pleurisy I have along with the PE -- causes extreme chest pain, so of course I freak out when I feel my chest go wacko because I think, "Here we go again") and it helped, both physically and emotionally. I literally cried in the office for 20 minutes, and during the treatment, from the sheer release of fear, panic, anxiety and everything that comes with this.
What has really helped me: 1) talking to/surrounding myself with people who are supportive: this means they say 'it is okay to take time to heal' because I am a perfectionist and didn't understand the extensive length of time recovery will take; 2) seeking alternate remedies (acupuncture being one; going to a chiropractor too to release the fear); 3) talking to my doctor/keeping appointments -- and going back to the ER when needed (I have been 5 times -- we're done with that cycle now, because this is what it is); 4) really changing my diet/foods/overall health: the extra 25 pounds is not helping anything, but I am slowly addressing it and making LIFE changes to love myself and treat my body with the respect it deserves; 5) follow up with your doctor/tests: it was a huge -- okay, maybe not huge, but definitely a big relief to know my clot is already dissolved (it's not "festering" in my body).
I am going to take others' advice and talk to a counselor. I feel depressed and anxious, and even though I am lucky to have family/friends who try to understand, it's like someone else said: once you think "I could have died" and really acknowledge mortality, it can be a scary thing.
I refuse to do this by myself. I am a strong, wonderful person, a kind, good soul, but everybody needs others to recover! Good wishes to everyone today.
For a while there I hung on every word and every symptom that said "normal" I still do.
Thank you. xoxo
Now I have said goodbye to my "old normal" and am gradually settling into my "new normal". I think I grieved and still do, for my life before the PE's. And I went still do go through all the grieving processes. Sadness, anger, bargaining, denial, acceptance etc. and often all these emotions all in the same day. Sometimes the same hour.... :))
I am an artist and can loose myself in my paintings when things get tough. So I use this as my "safe place".
Now 3 months in. I find that family friends etc have moved on with their lives leaving me behind to cope best as possible. That's a difficult pill to swallow.. But it's normal.
But, I'd like to scream out some days, "Hey I almost (did) died.... I have an illness that although you cannot see it from the outside, like some huge open weeping festering wound. It is none the less still there (maybe not weeping and festering though :-))).
That's the thing.. there are no visible signs of the damage done to the body and mind, all of it being on the inside. They don't feel the SOB on even having a shower and putting a pair of kniickers on!!
:-))
They don't feel the desperation and frustration on just walking around the back yard looking at what needs to be done, and knowing or trying and realizing we physically can't do it.
They don't share our pillow at night, listening in the silence, to our hearts beating like drums in our ears. Or share the thoughts crashing through our thoughts of near death, what could have been!!! What is us now!!!
They are not afraid to walk alone around the supermarket, in case something happens and we are alone and out of our safe /comfort zone.... our home.
They are not us when people we meet ask "how are you" and we say "good thank you" but think ... feeling far from it.
They don't feel the anxiety every time an ache starts in the legs or arms or chest. Will this be a new clot...? will this be the PE that gets me?
They don't feel fatigued after just sweeping the floor.
They don't inject or swallow poison everyday just to stay alive...
On the outside we present as "Cured"! "Coping"! "normal"!
The actuality is that the healing going on in the inside of us is no different than a broken bone fusing and mending... No different than a huge incision stitched healing and scarring. We just can't see it... but most of us can feel it. And it's that unknown that is confusing and stressful.
But what ever injury to the body... seen or unseen... "TIME" ... is the only thing we can rely on ... all healing takes time.
How we spend that time is the key.
In the meantime I will continue to read all the advice I can get from you my new extended family. The one family that understands who I am now, and where I'm at now. :-) And I know I won't hear from you guys..."It's lunchtime! And you are still lazing around in bed!!!! Not something I do all the time.. but on the days I do... I am determined to not feel guilty and listen to my body, no matter what anyone else thinks..
And on my Doctors!!!!!! one word "useless"!!! This is one issue I really need to address.
I did mean to say a couple of words and be off.. ha ha ha ... Oh well Hope I haven't bored you all with my ravings :-)))
Kerry
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