new and scared...so nothing uncommon

[bt320]

Hi everyone,
I'm glad ive finaly been allowed to post...i've been eavesdropping for awhile...lol i'm 32 with bicuspid/AS that has always been mild-moderate. It was found when I was 8 and diagnosed at boston children's where i'm still followed. I recently had an echo via my pcp at an outside clinic and the regurg has become moderate-severe. I was told everything else was still good. Heart strong stenosis still mild...but since finding this out i feel twinges, breathing feels short...I'm aware of every sensation! I have had 3 pregnacies...1 set of twins the last time around. Big babies went full 40 weeks & delivered 3 natural then babyB of the twins needed csection because his numbers were dropping. Played sports never any restrictions. The sudden change in leakage scares me especially after reading how quickly things can progress. But could it all be in my head where prior to this info i was feeling nothing? Also, ive only had ekg and echo's my whole life but they always check neck/abdomen. Love my Children's Cardiologist but should I be asking for additional tests. And thanks to you all for the info ive already been sucking up from previous posts.

 

[Rick]

Just wanted to welcome you to posting. I was diagnosed in my late 30s with moderate-severe aortic regurg and a bicuspid aortic valve. I felt panic, beyond scared, the first month. I am still in the waiting room and do get "twinges" or palpitations or strong heart beats now and again. My heart does not feel like it used to 5 years ago. All I can say is that eventually I accepted what was always true: you never know what the future holds and how long we all have. Where we are lucky is in that (i) we have been diagnosed so can take some steps to help your body (I lowered my weight; walk; avoid caffeine and stimulants, reduced sodium intake, and take BP meds; (ii) we have a been born in an era were this disease is potentially manageable - 50 years ago, it was a death sentence, now I am expecting a very tough surgery but there is something that can be done and (iii) most that post here and are diagnosed are in a position to be able to afford surgery and treatment - that is likely not the case for all of the world's population. It took me some time to stop asking "why me?" and reach peace ("why not me?" many people have serious health issues, some untreatable and even children, younger than us.....yet many of these individuals still somehow manage to enjoy life). For me, the diagnosis was incredibly difficult to listen and accept (I still wonder if I have accepted 100%) but time, knowledge, and potentially a spiritual perspective may all help you reach a more peaceful place.

Best wishes,

Rick

 

[Greg a]

bt320 Welcome , our family consists of many members your age and similar lives .......Jackie aka Malibu82 comes to mind and I am sure she will check in soon .....until then you may want to read her posts ... You can do this by using the forums search function or by going to the community tab and finding her profile

 

[scott.eitman]

Welcome aboard! It is amazing how a diagnosis changes averything. 2.5 years before my second surgery, I was told I needed surgery. My Cardio allowed me to wait another 6 months to be re-evaluated because I told him I did not need surgery. That was a long 6 months. I had the 6 month follow up with a stress echo and my cardio said, you are right surgery is not needed now. I rode my bicycle 3,000 miles that year and the following. Yes, it can go to your head!

Best of luck to you and stay well.

Scott

 

[Greg a]

bt320 Welcome , our family consists of many members your age and similar lives .......Jackie aka Malibu82 comes to mind and I am sure she will check in soon .....until then you may want to read her posts ... You can do this by using the forums search function or by going to the community tab and finding her profile

http://www.valvereplacement.org/forums/member.php?7170-malibu82

 

[Lynlw]

Hello, glad to meet you. I would find out the numbers from you last echo's, there could just be a slight increase that would move you from mild/mod to mod/severe. Also since you went to a different place, for your last echo, any changes could just be a matter of different techs measuring.
Do you go to the Adults with CHD center at Boston? That's one of the places we went when we were looking for new doctors for Justin we ended up going to philly because that is 20 min from home and boston was 5 hours, but we still get 2nd opinions from them when Justin needs some kind of surgery or intervention.
FWIW you are at one of the very best Centers for CHD and adults with CHD. They are always ranked 1-2 with CHOP (childrens philly) and then there is a big drop to the rest of the CHD centers according to most rankings http://health.usnews.com/best-hospitals/pediatric-rankings/heart-and-heart-surgery

 

[Lauratx22]

Hi- I am 30 yrs old and I have one child. 8 months old. Feel free to message me. I have moderate regurgitation. I was just wondering if you had moderate before the twins? Thanks- Laura

 

[malibu82]

hi there! i am 29 years old (female) and i found out i had a bicuspid aortic valve while i was pregnant in 2008. at that point it was only mild/moderate stenosis. the doctor explained my heart problem as something that may need surgery when i am in my 60's but not to worry about it until then. so i thought nothing of it, never thought about it again actually.i had two full term big babies. 5 days after my second baby was born, i headed back to the hospital with a terrible headache (which turned out to be caused by my failed epidural during delivery) and after a ct scan they told me they had to remove my gallbladder and that i also had an aneurysm in my aortic root of 4.8cm. they said i was lucky to have made it through two pregnancies with that. my stenosis was still mild/moderate.

they asked me if i had been tired, short of breath, back pain. and i was like ok well, i have been pregnant for practically two years! (my babies are 1 year and 1 day apart) so YES! butat that point i had no idea about what was heart or pregnancy related.

i felt just like you. normal before, but now with the diagnosis you suddenly feel something! i thought it had to be in my head, but how could something "in my head" cause the actual feelings???

i dont think its a sudden thing, i think maybe before we did feel these things without realizing it...things you would put off, or not think twice about or think was normal because of not knowing the severity of your valve or the symptoms to look for

i had pain in the upper part of my left back that i knew was internal, it couldn't be massaged.
i know EXACTLY what you mean about twinges, that is how i have described things too!
i would also have pain in the front of my left side, a little left to the center of my chest.
i was tired but then again i had a newborn!
never was short of breath

i ended up having surgery 5 months later, not because of my valve, but because of the aneurysm. i didn't want to risk it bursting! i had it replaced with a tissue valve and felt great after surgery for the next 3 months. i felt back to my old self.

well now i can tell you my tissue valve has been measured back in the moderate/severe range already at 8 months out and i AM having symptoms that i know are not just in my head. i get out of breath talking on the phone and walking at the same time, i get out of breath going up the stairs carrying something or not, i am always tired and yawning even with 8 hours + of sleep. my pain in the back and chest is back. when working out my throat feels tight, and i feel like i have been running the the cold weather...you know that weird feeling you get...also my palpitations are back especially with activity.

the cardiologists say i am fine and to come back next year. one even told me i can have another baby if i wanted to. i

i felt just like you. before you felt normal, and now with the diagnosis you suddenly feel something! i thought it had to be in my head, but how could something "in my head" cause the actual feelings???

i dont think its a sudden thing, i think maybe before you did feel these things without realizing it...things you would put off, or not think twice about or think was normal because of not knowing the severity of your valve or the symptoms to look for.

have you been checked for aneurysms? they sometimes accompany biscuspid valves.

also, have you had your children check for heart problems? i would like to get mine tested but i dont know what is a good age to do that at....

 

[bt320]

thank you all

thank you all

Wow you guys are all great. I called my regular cardiologist at Children's Boston and have an ekg, echo scheduled for March 17th. But the "go to" for my doc said that this happens all of the time. Echo's aren't an exact science as far as grading, and one doc's mild to moderate is another's mod-severe. Ugh....Malibu i had my kids tested in utero, but no murmurs have been picked up at this point to indicate anything. My kids pedi was mine also, and the one to find the murmur! In response to the anurisms (sp) they dopler my neck and stomach during echo....would that pick up on one?
Thanks again for the great welcome...Ive lived my life since 8yrs old like I've been walking around with a time bomb in my chest...the comfort has been immediate