Pulmonary Embolism Support Group

I had really bad anxiety too after my first PE, i had anxiety medication though did your doctor prescribe anything to you?

In my research I have come across anxiety as a big time symptom of PE. Funny that NO doctor I have seen has mentioned this even though on three medical reports it stated the patient[me!] is a pleasant yaddyaddyadd... but appears extremely anxious!!! Both the ER Dr, who finally diagnosed me and the hospitalist and specialist who I saw in ICU!! Go figure!!!

I meant to finish - anxiety is NORMAL. I am not an anxious person but even yesterday I had a brief moment on my drive home again when I just cried but i am getting better and just let the tears flow - don't fight it - sometimes there is no reason I was not upset or anything just there they were dripping down my face!! All part of the healing!!

I just got home from the hospital two days ago on 10/5. This all sounds so familiar to me. I live 6 hours from my family and 3 hours from my boyfriend, I'm scared about being alone now. I've had pain in the evenings and I'm tired so much quicker than I was before this all happened. I just want my normal life back.

On one hand I'm rejoycing that my doctor caught this and I'm alive and I'm going to get better.

On the other hand, I'm angry that this happened. Angry that I took the birthcontrol that caused this, because it wasn't worth the risk in my mind, but I didn't realize how risky it was. And I'm angry that I was misdiagnosed by and ER doctor before my doctor caught the PE. I walked around for 5 days taking pain killers and thinking I had a pulled muscle in my side. I could have dropped dead and I was none the wiser.

But I do fee less alone after reading everyone's stories. Thank you.

Hello Kat989,

I understand how you feel. Being alone with the kind of anxiety you have and that many of us have experienced is just too much to deal with. I hope there's someone who can stay with you for a few days if you want them.
We have a right to be angry when we are improperly diagnosed, yet many other disorders have similar symptoms, I suppose. Then again, blood clots are pretty common in patients presenting to the ER, so I think doc's might ought to be better able to diagnose. (When I got to the ER, my PE was diagnosed quickly and accurately and treated immediately, so I have no complaint with my ER experience.) But, I should have known what was happening to me, since I used to work in EMS, and I didn't... on the way to the hospital I asked my husband stupid questions, like, "can your ribs get locked over one another?" and, "wonder what the heck I did to pull a muscle like this?" I was hypoxic - oxygen deprived - so my brain wasn't working very well. I know I had the clots in my lungs for at least a week too, because I'd hurt and been short of breath, and very anxious, for a long time.
Yes, we're lucky to be alive, but the immediate thing to deal with is the anxiety and fear. I encourage you to ask your doctor to help you with it, with medication if you both agree you need and want it, or by him/her spending a bit of time explaining your physical status. No doctor spent any time at all telling me what to expect after I was discharged from the hospital - I am incredulous at that now. And I am a whole lot ticked off that it is apparently the most common situation PE victims find themselves struggling with.
Hang in there and know that you are in my thoughts and prayers. Hope that you find some relief soon.
Regards,
Dianne (EastTN)

Kat -

I just responded to your other post and was hoping the anxiety bug hadn't hit you. I'm sorry that it has and it is perfectly normal as stated. I actually went and found a counselor as mine got so far out of control that I was worrying moment by moment if I was going to croak. Doctor could tell me 100 times that I'm going to recover fully, but with my chest hurting, heart doing flip-flops, feeling lightheaded, I really wasn't hearing the message. In fact, I started popping anti-anxiety meds until I was up to 4 mg a day of Xanax - I was waking from a dead sleep to take more. My wife kicked my butt and I'm on a tapering dose (down to 1 mg a day now - were to have just quit it would have really screwed me up). When I realized my anxiety was a serious problem I sought some counseling that helped tremendously. His advice went something like this:

No physical injury, illness, or trauma can be as psychologically debilitating or difficult to deal with as one that causes difficulty breathing. Our natural response to not being able to breath is to work harder to breathe. Think back to anytime you might have scared yourself along these lines - have you ever started to choke on some food, had a prolonged coughing fit that made you see stars, been knocked in the gut and winded, etc...? Remember that initial panic? Now prolong it as you recover from this, even at a lower level of intensity and it's only natural that your brain and body are going to respond with a bit of worry. Remember this next time you start feeling anxious and it might help you reason your way out of what is a justifiably emotional state of being into one that's a bit calmer.

Talbot (easystreets)

Totally ditto, you guys. I think these days, I'm more mad that the docs don't say anything about the anxiety. I was practically hyperventilating at the cardiologist's trying to explain how anxious I was, feeling like I couldn't breathe. He was great about everythin else, but when I mentioned anxiety, he just sort of stared at me, like waiting for me to implode, or something. Maybe he was afraid I'd ask for meds. Funny how some docs hand them out like candy corn on Halloween, and others treat everyone like a drug addict. There was even a "discharge nurse" who evaluated me before my release from the hospital to see if I would need any assistance after I left. But he was more concerned about the amount of stairs I had (four-story walk-up that actually turned out to be no problem ... luckily!). No one ever said anything about the extreme panic and sleepless nights! The one person who gave me a bit of warning was my aunt who said, "Now, don't be surprised if you have some post-traumatic stress from this." She used to work in a medical clinic in rural upstate NY, and I guess was pretty familiar.

I have to admit, I'm a little ticked that the initial diagnosis (gallstones!) had me initially waiting around for almost a week for the sonogram. I just couldn't wait that long - the pain got so bad that they admitted me to the ER and gave me a sonogram a few hours later ... I still walked around with this thing for 4 days. I know PEs are difficult to diagnose, but no one should have to wait around for days in excruciating pain whether it's PE, gallstones, bruised ribs, or whatever.

Anyhoo ... take care you guys! This DOES easier, and you will get your life back ... just hang in there!

I met with my nurse at the anticoagulant clinic today. She's awesome and the support of the clinic is awesome. I asked a ton of questions and she did her best to answer then all. Even the one that a paranoid on my part like my arm hurts can I have a clot in my arm right now. She understood and told me to call her, the doctor, or even the on call doctor at anytime if I had questions or if I felt something was abnormal. It all feels abnormal to me right now.

This is way more empathy than I received from the nurses while I was admitted. they barely seemed aware of my condition and one even refused to give me the pain meds I had been getting all day before her shift started.

I also have been letting go of the anxiety by telling everyone who will listen about PE. I sent out an email to all my friends talking about the warning signs and made a facebook group for PE awareness. I'm going to kick this things butt on all fronts. And that will curb my anxiety.

Much love,
Kat