Please excuse my typo's, I hope you can make out the jest of what I was trying to say....it's like my brain works faster than my fingers!! I should proof read what I write but I don't....mainly because when I'm in my room, with my laptop, the internet seems to have problems with connecting, never have that problem in the living room....so as soon as I'm done typing...I send it as quick as possible...lol
I know, I was so paranoid when I found out that I was pregnant with my 1st child, I just him/her to be healthy, I've had these heart palps since I was 13yrs old, so heart problems always weighed heavily on my mind, I ate well, I don't smoke or drink , I even cut back on the caffeine, doctors thought everything was fine...
The day I gave birth, I didn't think twice of the "blue baby" I had just given birth to, that is until my husband kept noticing that Blaine's breathing was very shallow and at times ceasing, nurses ran him to the NICU, I was still laying in the recovery rm, still in shock, next thing I know 2 doctors came into my room, declaring that Blaine was having problems with his heart, so the next day he had his 1st heart cath(during heart cath, they seen that Blaine was born with a malformed right ventricle,basically non exsistant,thats where hypoplastic means), the day after that his 1st open heart surgery, at 2yrs old Blaine had his 2nd surgery...Blaine is now 16, he's doing well, because of their condition, it's very rare, their life expectancy is unknown....
When I was pregnant the 2nd time, I went to a geneticist who declared me and my husband "fine" and said that our chances of having another baby that was this sick was highly unlikely, our chances of winning the lottery was better....my 2nd child was fine....I got pregnant a 3rd time, I was a high risk pregnancy(because of Blaine) so during my 5th month, I had a sonogram, the tech, went to get the doctor, they thought something was wrong with my baby girl, I was referred to a pediatric cardiologist, I than had a fetal echo, which determined my daughter had Hypoplastic Right Heart Syndrome, they said 'Alexandra's' heart was even worse than Blaines! I was so sick with fear, I prayed to God that Alexandra wouldn't be born blue, she wasn't, she was pink, thank the Lord! Alexandra had her 1st open heart at a day old, 2nd surgery at 6months old, and her last at 18 months old, she is also doing well...she's now 11yrs old....if you were to see both of my kids, you'd never guess they were sick...I've truly been blessed!!
Oh Julie that's terrible - I can handle pain; problems ok, let it be one of my kids young or grown and I'm a basket case, I don't know how you've handled that many surgeries.
My oldest son had kidney surgery when he was 11 but he was so proud of them & the scars (battle scars - kids are so weird at that age lol) I had to get over it. Hes 24 and just sprained his ankle, he's in the Air Force and came to see us a few weeks ago and I was s"mothering" him and told him to see a dr off base lol it never goes away. The typical are you SURE it's only sprained, it really looks broken. after a MOOOM! I'm fine I said good I hope it hurts rotfl
how are your children doing now? I've never heard of hypoplastic heart, what is it ?
Natasha Richardson reminded me of when I went to my new pcp when I was first diagnosed. I slipped and fell hitting my daughter's wooden doll house and broke my 2 small toes - my dr had me do all kinds of things and asked alot about my head/heck area and felt around - I asked what he was doing - he said he was trying to feel and see if I had any external swelling on the fall.
Luckily I didn't but it's scary to think I could pass out or slip and fall at any time and that kind of thing can happen.
Your definitely "one" of my heart sisters...lol...it's like I could almost "feel" your anxiety in your letter!
And you are sooo right, that's exactly what goes through my head also, but what's so funny, is that I always thought I was the "strange" one...that is until I found this forum, now I feel like we are just our own little melting pot...haha!
You know I was even bothered when Natasha Richardson died, that wasn't even cardiac related, she hit her head, they thought it was something minor and a few hours later, she was brain dead!! I always need answers, otherwise I'm left with this big "what if?" kind of attitude, and I absolutely hate that! I have this need to know how and why somebody died, and could it happen to me??
That's how felt about MJ, now they are thinking it's drug related, it ***** for him but in the back of my mind...I breathe a sigh of relief, thank you Jesus! I try and take care of my body, I do my best, and when you brought up Billy Mayes(SP), I read up on what happened to him, he had hypertension and had atherosclerosis, that hit way to close to home, I recently met a man, great ,great, guy,well he has told me he has had 3 heart attacks AND atherosclerosis..he's ONLY 45!!
He too has heart palps, and because of his condition, I worry about his health, constantly! And he doesn't even over react,like he should, he just blows it off, no big deal, his dad has the same condition....Mark(my friend) had his 1st heart attack at 38!
So not only am I worried about my own stupid heart palps, I worry about his!! BTW, 2 of my 3 kids, were born with hypoplastic right hearts, they've had 5 open heart surgeries between them.....WHEW!!! This NEVER ending....lol
oh my gosh, you said something in your post to lisa that hit the nail right on the head...
" I really hate it when you hear of somebody famous dying, and they report it was probably cardiac related...why us?
Don't they know that there's people like US that live for the moments when the results of their death are not entirely blamed on cardiac failure, some other deviant was at fault "
I think that too!!! Exactly!!! I hear about a famous person...and I almost hold my breath....like..ok..what was the cause....and then the inevitable ... "cardiac arrest"...
Look at Michael Jackson ( we can probably attribute to medication on that one tho) but that other guy..the infomercial guy--- Yikes! Cardiac arrest ....completely. The one thing everyone on this post is the most fearful of. The dreaded SCD..Sudden Cardiac Death...
Why does it seem like its ALWAYS that??
You are so right.
Girl you will go numb to it all, or at least I have. I have had PSVT and PVC's all my life, Sometimes I feel them sometimes I don't. I put a loud ticking clock next to my bed and fall asleep listening to it. It has helped a great deal, (the ticking reminds me of a normal heart beat), just remeber to keep the alarm off...LOL.
But if you can, try and relax. I know that it is hard. But it is the best thin you can do for you self. Also do like me if I start to get nerveous from them, I take deep breaths in through the nose and out of the mouth until I start feeling better, this may or may not work for you, but it's worth a try.
Thanks for the comment...I plan on asking alot of questions...FOR US...LOL...I'm the type of person that has to have answers, I need to know, how, what,where and definitely the WHY....
There's got to be answers, there has to be a reason, I really hate it when you hear of somebody famous dying, and they report it was probably cardiac related...why us?
Don't they know that there's people like US that live for the moments when the results of their death are not entirely blamed on cardiac failure, some other deviant was at fault
I hate the fact that my cardios nurse is the one that usually calls or doesn't (in my case) call me back....
In my case I always feel like my heart palps are going to be the death of me...
I wish I could just be numb to it all, I'm way to symptomatic....I'm just a big scaredy cat....lol
Right Back Ya Lisa!
Julie; congrats on the new job - that's wonderful - get in good with the heart docs there lol ask them lots of questions for us :P
Even with my craziness I go through waves. It's such a pain and I can relate to the ER thing, they look at you like you're crazy and say oh nothing is wrong - been there a few times before my heart thing started.
Sometimes, there's this fluttering all over like about 50 different places, some worse than others. Then other times I get this hard crushing pain in different places that turns into sharp piercing pains that last for 5 - 10 min; kind of reminds me of contractions; my husband says I'm crazy describing it like that, but most people understand when i say it.
Luckily most of the time, it's somehwere in between those 2 scenarios.
I'm not fond of doctor's who don't treat their patients the way yours does - my dr calls me back, heck I even got a get well note from my pcp's office last week when they found out I decided to go through with the EP and surgery.
Take it easy and feel better
I really do need to start going to bed earlier, my shift is going to be 7am-7pm, 3 days a week,(I'm going to be working in a hospital on the cardiac unit, go figure) so I need to get my rear in gear...lol!
I did call them back, twice...haha...they can't get rid of me that easy...I talked to one of the nurses there and she told me she'd talk to my cardio's P.A and get back with me....and.....never called back, she did say, if you start to feel that way again, don't hesitate to go to the E.R...needless to say, that didn't go over to well, I stayed pretty nervous all day....
Your right, I definitely need that reassurance...just reading these posts...does tend to help alot!
Thanks for writing!!
Have a goodnight,
I've had those nights. You will be okay. You have been going to bed too late girlfriend.
I sat through church a few months ago with one coming every 3rd beat. If we just didn't feel every sensation...but we do and it *****. I can't believe your doctor didn't call back. Call again tomorrow. I think you need some reassurance (like I did back in February) in order to get a handle on these things.
I've been without a job for awhile, but this kind of got worse when my boyfriend got laid off, so we've been staying up all hours, watching movies, eating...lol...need to exercise(that's another story,scared to work out for fear of the stupid skipping beats)
Anyway, 1:00am is late, (I found a job, so I'm trying to get back in the swing of things, because I've been going to sleep at 5:00am!!) and I know about the palps that happen because of lack of sleep, those scare me! My heart feels like its pausing and skipping all over the place, so much to where I feel like I'm going to pass out...
I can't imagine days, nights or even months...I usually get the palps, off and on throughout the day, but not like the other night, they were coming, it felt like in waves!
Is that what you usually get? How do you relax when it happens? I find it so hard to even think straight, I just sit here and pray! Thank you for your response!
I've certainly gone through lengthy episodes like that. Days, weeks, months on end.
How much sleep do you get a night? Going to bed at 1am sounds pretty late. I know if I don't get enough sleep for 2 or more consecutive nights I can expect the palp monster to pay me a visit.
Thank you for responding, last night was much better, what made the other night so bad was the fact that, I FELT every beat, I mean thats out of the ordinary....that's what made it so uncomfortable to go to sleep, comforting words DO help, thanks to ALL of you!!
I just can't believe that even though my heart is structurally sound, that this is all normal?
I'd love to live into my 80's or 90's, that's what my family says, they say you watch you'll out live all of us....but NONE of them have ever complained about heart palps, just listened to me, maybe just never notice them.....I wish that was me...Lord knows I do!
Sorry to hear you're going through this; I know when I can't sleep it makes me feel worse and my body do weird stuff and have pains I never felt before.
Believe me you're not alone - and each day I go through this I kick myself for asking for a 2nd opinion and not going through with surgery already. Now my surgeon will be out of the country for 2 weeks and I have to wait until then and suffer; I guess that's what I get for being stubborn.
Mine do not go away, at all....every 3rd beat, 24 hours a day; day in day out - it reminds me of the edgar allen poe poem with the crow - slowly driving myself insane, or is that more insane? they are getting WORSE ugh and to the point I really feel like dying would be easier - especially when my BP gets so low I feel like passing out even laying down or sitting.
I get fluid in my legs sometimes too; no pattern to it. I just notice it's there and came on like a flood - then the ankles start to swell and feet and hurt then go numb from so much swelling, then it just poof goes away. I have low BP and sodium; so it's not what Im eating or drinking.
I would go for the ARVD testing just to be safe and for your peace of mind to rule it out. My ekg in 2007 showed I had a RBBB but they never told me, so I haven't asked about that, too many other things going on.
Don't feel alone with your symptoms. Sometimes it seems as if I never have a correct beat and I am almost afraid to go to sleep for fear I won't wake up again. Thanks, GrandRon for your helpful words. I am wondering if anyone is bothered by a feeling of "heavy" achey legs. I seem to get fluid retention in my legs and feet every afternoon now and am wondering if it is related to heart issues. I only have PVCs and bundle branch block, but now I am wondering if something else is going on...I wonder if this means I should go for the ARVD testing my cardiologist suggested (though she said it was rare). Anyone have any ideas?
I'm a little older than you, male, and have had PSVT and PVC's for most of my life. As I have gotten older, the patterns and frequencies have been constantly changing. At this time, like you, I am having very frequent PVC's when I go to bed at night. When this first started, it only happened if I was on my right side and now happens no matter how I am laying. If I change positions, my heartbeat normalizes for a minute or so, then the PVC's start again. Funny thing though, I don't think the PVC's continue after I go to sleep, because they do not seem to be occurring until I am fully awake again. Go figure. This has been going on for about six months and, like you, I could not go to sleep at first. Then I just forced myself to not think about it and could go to sleep. It was not easy to do, but if I can do it, you can too. I have had every test more than once, and except for the irregularities, my heart was found to be structurally sound. I recently discovered that this condition is hereditary in my family and most of my close relatives have lived into their 80's and 90's. You have to remember that your heart is a very tough organ with several backup mechanisms to keep it beating when one of them fails. Don't be afraid of these things and replace fear of them to annoyance and acceptance of your situation if your heart is structurally sound. Meds or surgical intervention might help but rarely eliminate heart irregularities.