Saturday, September 6, 2008

Heart broken...

but not in the sense that you all may think.

I have been having mini anxiety attacks at night. I am super worried about my heart. My actual heart not the “love” one. Throughout the day and at night I can feel my heart beating. Sometimes it feels like it is going to explode right through my chest cavity. Sometimes I feel like others can see it beating. Sometimes I will even grab my stethoscope and see just how hard it is beating. But then the crackles from my lungs over ride the heart and I can’t hear didly.

I have this down on my list of things to talk to my DR about at my next clinic appointment on September 24th. I am just worried that I am going to end up needing a heart and lung transplant. My worries are totally unsolicited since I have no idea if my heart is even behaving in a bad way. For all I know my resting heart rate of +100 could be ok. Though I highly doubt “resting” at that elevation is happening. I’m already hesitant about a lung TX so adding the heart into it might be the factor that throws me to a no. Or what if I get the lungs and then a year later I need a new heart? That is a lot to put on the body. Again totally could be worrying for no reason here.

I have been checking my O2 and HR when I wake up in the mornings. Right after my alarm goes off I thrust my finger into the pulse ox and stare at the bright green light. Almost always I am around 90% or lower and my HR is above 115. I just woke up WTF? I am also going to ask about a sleep study. More for curiosity’s sake than for anything else. I am sure my O2 doesn’t drop low enough to warrant supplemental oxygen at night, according to the insurance companies, because they are doctors ya know. Or maybe my heart rate is super high and THAT will get me O2…who knows. But for now I will just lie in bed at night listening to the thump thump of my heart and hope that I don’t freak out.


  1. Amy my heart does the same thing. Sometimes it feels like its beating so hard it kinda hurts. Kinda like its beating into my chest? When it does this it I always think its beating extra loud too, like I feel like everyone can hear my heart beat. I've always have had fluke heart papulations so when they run test my heart doesn't act in its wierd way. Its been doing it more recently and when I mentioned something to my home health nurse she said it sounded ok, so I dunno. Anyway now that I have wrote a book, I am basically saying your not alone. :) Sorry I can't be more help. heh

  2. I am SUPER aware of my heartbeat and am always putting my fingers on my neck to check my pulse, especially right after I have to walk up stairs or something. I think as CFers we are more aware of our bodies in general, but we also tend to have high heartrates. Blah, yet another fun aspect of this disease.

    It kinda sounds to me like you need 02, at least while you are sleeping. My heartrate was a large part of the reason I was put on it at night and now my heart is completely normal, even during exercise. I would schedule that sleep study ASAP.

    Hope you get this all resolved hon!

  3. I think a sleep study is an excellent idea. You may be desatting at night which puts much more work on the heart. I have strange tachycardias (SVT) due to faulty wiring so to speak, but have experienced high heart rates when I am sick and my O2 level isn't optimal. Before I was placed on the vent for good, my resting heart rate was 120 or so because I was working so hard to just breathe. Once vented, my heart rate dropped to the 80's and my saturation was where it should be.

    If your sat was 90% right after waking up, I can't imagine what it drops to while you sleep...IMHO, I too think you should be on O2 at night.

    I will be keeping you in my thoughts...hugs, Jenn :)

  4. Hey, just wanted to add to the chorus of it seems like your heart rate really is okay- my resting heart rate is 99-ish, and that's because my heart beats faster to supply oxygen. So I'm sure if you have a high heart rate, and low oxygen, maybe the two will factor together to get you your night o2.

  5. Thanks guys...You pretty much told me what I expected...O2 at night. Which I am kind of glad to hear. And I am also glad to hear I don't need to have anymore panic attacks LOL!!!!

    Thanks all Love ya lots!!!!!


  6. Amy-- My summer was so weird I never even saw a computer. Kids back in school, I look at the ol cfdotcom, and, "hey! WHERE'S EVERYONE?!?!?!" Last time I looked, you were off to Europe or something. I was REALLY worried about you, emily's 65 roses and Amy in LA... So Mel shot me this address. I'm just looking it over. Don't find it easily navigable yet, but I'll figure it out eventually. Meanwhile, glad to see you're still fighting the good fight, my dear!

  7. Hi Amy!
    Love your Blog! I have cf and had a dbl lung tx in 2006. Before my tx my heartbeat was never under a100bpm. Resting was around 120. I had very bad anxiety. After my tx, it's around 80bpm resting. Just speaking for myself, my tx was the best decision I have ever made. Although I was very sick and it made my decision a lot easier. Like the others have said, O2 at night sounds like a good decision

    Take Care!
    Kevin, 32, Tampa, FL

  8. Amy,
    When I was pre-transplant, my heart rate was always around 100 or over. If you are waking up with it higher than your "norm" and your sats are around 90%, then you might want to consider some O2.. just at night. It would help you sleep better, and you would feel more refreshed in the morning. It is a drug, ya know. LOL.

    I would also talk to your doctor about this and see if he wants to run some diagnostic tests on you to figure out if it really is your heart that is having problems, or if it's all a result of the lung disease and low sats. A sleep study like these other people mentioned I think would be a great idea too.

    I had one panic attack pre-tx, and my husband called 911. I was so embarrassed when they told me what was wrong. Basically they patted my hand and stayed with me until I felt better. But it was an awful experience. I just knew my time had come to an end. lol.

    I hope you feel better and have a great appt. on the 24th.

  9. Panic attacks absolutely suck. I've really only had one, but it required an ambulance trip. I had severe nausea and cardiac palpitations. It was a very disconcerting experience, and to be told after all that drama that it was an anxiety attack only, was a bit embarrassing, but I'd have never known otherwise. I'm sure the Ambulance Authority has seen worse.


  10. Sorry you are having anxiety. That really stinks! From everyone else's responses, it seems you aren't alone with the heart rate thing. I know that doesn't make you worry any less though. I hope your doc has some solutions for you.