New member

[aussigal]

Hello everyone..

My name is Tonia and I live in Australia...

I was recommended to visit/join this site by another heart-friend.


I have Bicuspid Aortic Valve syndrome/disease...my father died of this when he was 38 so I am rather scared of following in his footsteps except for the fact that I know I have this and he didnt,,no ultrasounds were used back in the 60's to look for this apparently...

so I am looking forward to meeting you all and learning more about this valve of mine and the experiences others have had and are having...

so far I am very impressed by the info. I have read here...

 

[Foxxy74]

Hi Aussie Gal.........good to see another Aussie on this site to chat to (well not good, due to the context of why we are here, but still good that you found the site .
You are fortunate that you are aware of the Bicuspid Valve and can monitor it and your Aorta. I on the other hand was not so lucky and only discovered that I had the disease after my Aorta Dissected on the way home from work. I now have a ATS Mechanical Valve and a Dacron Aortic Graft extending from the Root to the Arch. I have elaborated further on my experience in the post 'Aortic Dissection at 30yo'.
I hope that this site is helpful to you, I know I have found it a great resource, and a great source of information from your peers.

Anyway, welcome, and I hope to hear from you again soon.

Take Care,

Chris.

 

[Debrinha GT]

Good morning/evening for you!

Good morning/evening for you!

Hi and welcome to this great site! My name's Débora and I am Brazilian. I know how you must be feeling and I'm sorry to hear about your dad. I had rheumatic fever as a child and so far, I've had three mitral valve replacements, and will be having a fourth within a couple of years. I don't really have any information to give you on your condition, but you can be sure that others will come forward very soon with a lot of answers for you. I just wanted to introduce myself and say that you've come to the right place for information and emotional support. Take care and keep in touch!
Débora

 

[aussigal]

Hi there Chris !...you wouldnt be the same Chris that Arlys from BAVD is trying to contact for me now would YOU!? ...I have a feeling you are !..whoo hoo !...what a small world after-all...I am so thrilled to find a site dedicated to this..I will cetrtainly be reading every post .

and thanks for the warm welcome Deborah as well...Brazil is one of my dream destinations.

 

[OldManEmu]

Welcome aboard Aussigal. There are a few other members also from Perth that contribute regularly.

 

[Karlynn]

Wow, another Aussie! Has there been a Membership Drive going on in Australia?

Welcome, we're glad to have you join. We have many members who have/had BAV, so I know you'll find lots of information.

Can you fill us in on some statics? What's the severity of your BAV, do you have the acompaning aneurysm that can go along with BAV? Are you symptomatic, or is the echo the only reason you know you have BAV?

Pull up a chair and get to know us!

 

[Ross]

Wow, another Aussie! Has there been a Membership Drive going on in Australia?

I don't know, but if this keeps up, maybe we should have a reunion in Australia. You know, if money weren't an issue............

 

[Mary]

Hello everyone..

My name is Tonia and I live in Australia...

I was recommended to visit/join this site by another heart-friend.
I have Bicuspid Aortic Valve syndrome/disease...my father died of this when he was 38 so I am rather scared of following in his footsteps except for the fact that I know I have this and he didnt,,no ultrasounds were used back in the 60's to look for this apparently...
so I am looking forward to meeting you all and learning more about this valve of mine and the experiences others have had and are having...
so far I am very impressed by the info. I have read here...

Nice to meet you Tonia.
We think my dad died as a result of BAVD, but as you said, they really didn't know much about it thirty five years ago.
I had replacement for a stenotic bicuspid valve back in June, and my youngest son has also inherited a bicuspid valve. The good news is at least we learned to screen kids these days to look for it.
If you've been in contact with Arylss, you've already learned alot!
Welcome again--Mary

 

[aussigal]

Goodevening all and thanks for the continuing warm welcome...
I have definately found my new web-home !

What about me...well I am 41 , a mum of 3 boys 10,13,14...My dad died of suspected BAVD in 1972 and his father also "went" early....

As for symptoms I am only just beginnng to figure out what this is causing for the past few years I had thought it was skeletal/muscular as did all the docs...
Mum said I had this murmur when I was born but they didnt know what it was and it wasnt hurting/causing any problems...I then ignored it until about 5 years ago when my doc decided to see what this click was she could hear,,,i had moved and had a new doctor...
well lo and behold as clear as can be on the echo screen was a bicuspid valve...the cardio then said i should quit the smokes and live a healthy life with reiviews every five years...
so 4 years later I havent quit the smokes ( I know BAD GIRL !)...and am now having anxiety attacks because I have just found out the gravity of this condition,.,,,
i thought it was just another boring diagnoses that didnt mean much,,,when in actual fact i now find its rather important...the fact i have ignored it forever scares me a little...and all my pains are now scaring me...
I had been seeing a neurosurgeon for hand and arm problems and bad lower back...but now i worry it may be heart-related...so there is the beginning of me...
i am rather worried but looking forward to learning and conquering this
I havent done all the gentic stuff yet,,that is soon...
i am very Marfan-like and this scares me as well ,,,my aorta only measures 3.7 at the moment and I am waiting on the results from fridays angio. to see if there's anything else there!...my dad was soo young when he died I am scared to wait till the 5.0 my cardio says is normal...everytime i get those angina pains i freak.
Okies...time for more reading and learning.....
ask away I know the best way for me to learn is questions , so anything I have forgotten...gimme a nudge and I shall kindly fill in the gaps...

 

[Karlynn]

4 years later I havent quit the smokes ( I know BAD GIRL !)...and am now having anxiety attacks because I have just found out the gravity of this condition,.,,,

Yes, bad girl! I know it is very hard to quit smoking, but as you proceed forward in finding answers, it would be good. And particulary when you get to the point of getting things fixed it would be wise. Getting your heart fixed up and still smoking is like getting your car washed and then driving through a muddy field. But I'm sure you know all this.

Sounds like your aorta size is not even close to the worry point, so I'm guessing you can check that off your list. I question the doctor who diagnosed your BAV and then said to check again in 5 years. When you know you have a valve issue it's good to monitor yearly. One of the things you will learn is that you have to learn to be your own healthcare advocate. Not all doctors give good advice, or proceed with standard protocol, so you'll learn here about what should send up red flags for you with the medical professionals you'll see. There are many who "know their stuff", but the few bad, or not-so-good ones can be problematic. Don't hesitate to question what you are being told. Go to appointments with your thoughts and questions written down, and write down what the doctor or nurse or drill sargeant tells you.

Mom to 3 preteen and teen boys! WOW! My son and daughter are both in college now, but I really miss those crazy days of my son and his buddies hanging out at our house. They always kept me laughing. Enjoy your boys, they grow up too fast!

 

[Debrinha GT]

Hey Rossman!!

Hey Rossman!!

If you're considering having a reunion in Australia, make sure it's arranged for May of next year while I'm in New Zealand!!LOL!! I'm sure Wendy and I will be there!!LOL!!
Débora

 

[Natanni]

Hello!

Hello!

We found this site back in July and it has been HUGE help for us!

My husband had his bicuspid valve replaced a week ago today He is 38, and had a known murmur since birth, found it to be a leaking valve in 1998. Had a bout of endocarditis in July although the doctors were talking surgery back in June. His father had a heart transplant 15 years ago for cardiomyopathy with unknown cause, and it was suggested that we check our children as they are finding a very strong genetic link with BAV and my 9 year old was found to have a murmur.

Have you tried any of the prescription meds to help quit smoking? Here in the US there is Zyban aka Wellbutrin, and antidepressant that also aids in quitting that habit, and it worked like a charm on me 6 years ago.

Good luck on your research

Ann and Nathan

 

[WendyD]

Hi Tonia

Hi Tonia

Hi there,and welcome!!
We are just "across the ditch" in Auckland
Well you have definately found the right place for info and support.
Ernie, my husband had AVR at the end of March and we were so grateful for all the the support & info we received from this site.
Keep in touch and let us know how you are doing
Kindest Regards
Wendy

 

[gijanet]

Well, tie me kangaroo down, boys........

Well, tie me kangaroo down, boys........

tie me kangaroo down.......... Well, that about does it for my knowledge of Australia..........heehee!

I don't know diddly squat about BAVs either, but just wanted to welcome you to the group, Tonia. These guys will help allay your fears and help you with any questions you might have. BTW, have you had your kids checked just as a precaution?

Welcome hugs to you. Janet

 

[kia]

marfan's may be the wild card tho'

marfan's may be the wild card tho'

Sounds like your aorta size is not even close to the worry point, so I'm guessing you can check that off your list.

Aussigal mentioned that she's very marfan-like, which is a connective tissue 'issue'. IF so, aortic dissection and aneurysm are a worry at any size. She needs to keep a very close eye on it. My husband's family passes on a gene for the imprecisely named 'Familial Aorotic Aneurysm & Dissection". His aorta dissected twice then the most aneurystic part of it burst, fatally, at age 47. His mother, with a minor increase in aorta size, died of a burst aorta 5 months after he died (age 67). My daughter has dissected at age 33, once in the aorta, and two weeks later, her LAD artery dissected, causing an MI. She had open-heart surgery and a by-pass performed on the LAD. She'll have a better chance of surviving because we're keeping such a close eye on her now.

Aussiegal, do the genetic work-up and find out about the marfan's diagnosis. Technology and techniques are so much improved today that, with knowledge before-hand, you and your children (each with a 50% chance of inheriting the particular gene) have a better chance than ever before to suvive a connective tissue disorder. best wishes, Kia

 

[Ross]

Hmm, 41 and likes the beach. Got any pics of you on the beach?

Picnic?

 

[aussigal]

You make me smile, Ross yes of course I have piccys of my beach but I hold the camera !...You look like you would fit in well in Aus. with that wicked sense of humour Ross!... I love it!..
Here's a glimpse of my local beach just a 1 mile stroll down the road to peace and tranquility and the Indian Ocean.!...mind you it does get VERY WINDY here in Perth.!

Kia, love your name !...
Yep I am currently trying to get this genetic-testing organised for Marfans etc...and yes I have been on the trail of this for a couple of years now so I have all the info and help of a friend in the Marfans association too...

So I can already tell you guys that I BAVD IS a connective tissue disorder and that I have the arthritis and other joint stuff that goes with it,,,I am hypermobile(double-jointed as we called it when we were kids!).

I am now qualified to join the 4.8mm waiting-room club according to the latest scan...but I am not going to wait for long because I have read all the marfan-stuff and my dad 'went' at 38 from this so I feel I have been on borrowed-time for the last 3 years anyway before I even had this
scan.

 

[PJmomrunner]

Hi Aussigal:

I also suspected Marfan's, but found out through genetic testing that I do not have it. It's interesting that you mention having arthritis...I don't think of hypermobility as relating to arthritis. I thought arthritis generally pointed toward immobility. I have pondered this quite a bit because I also am rather flexible (I don't know if I'd go so far as to say hypermobile) and have some "markers" for arthritis.

My son (13, fairly tall and pretty hefty) is truly hypermobile (can "jump-rope" is arms with his fingers laced, put his ankles behind his neck, and touch his thumb tip to the BACK of his wrist (!!!)) I am 5'10" and extremely nearsighted and have the "wrist sign" (but so did the 5' 4" genetics counselor!). These are the reasons I was checked for MFS.

I also have a strong family history of ankylosing spondylitis (Maternal Grandfather, mother, uncle and cousin). I'm not sure if I should pursue testing for that--some sketchy references to connections to aneurysm, I guess. The flexibily, I thought, would tend to argue against my having AS, but I do have the back pain and those aforementioned "markers."

My surgeon didn't think testing for MFS was necessary. He felt the BAD explained both the valve and the aneurysm a positive MFS test would not change my treatment. (I went ahead with it anyway because I wanted to know for my kids' sakes. I don't think the testing is conclusive anyway because they only tested the FBN1 gene and I don't believe there's any certainty that MFS is only caused by FBN1 mutations. And the National MFS Foundation lists BAD as a related syndrome--what's up with that?)

Anyway, Hello! It's nice to have another person to chat with in the waiting room. Forgive me for wishing you weren't here!

 

[aussigal]

Thanks all for the continuing warm welcomes...

Yes I kinda wish I wasnt here too BUT BOY am I SO GLAD I AM if you know what i mean ! ...

Now the Marfans stuff..I score 5/9 on the hypermobility stuff was more when I was a kid...I have just about all the other connctive type stuff going wrong ie: all my tendons the major ones knees, elbows, ankles etc are dodgy for want of a better word ! ...I have Degenerative Disc Disease in 4 of my lowest 6 vertebrae and a huge mess up in the neck vertebrae as well and we havent even looked at The T-spine yet,,,dunno id I am game to now!...
I have Fibromyalgia-like pains everywhere and claudication issues in my legs and arms have also had carpal tunnel surgery and nearly the ulnar one as well but I held off...My Jaw suffers with TMJD and i am bound to have left something out but honestly the list is so long I appear to be a hypochondriac when I know I am not !...just know that all these aches and pains are not normal for a young reasonably healthy 41 yr old mum of 3. I also have the lack of fat beneath the skin, ok, call me scrawny I do ! .my arms are much longer than my height too...and I have the visable veins all over my torso...mmm...gotta stop this is ridiculous...i hate seeing it all laid out in a long list like this..lol...

Okies

I am not going for any prize to be the sickest here and I certainly dont want to be a whinger...I am just sharing symptoms in-case anyone else may be helped...

righto...so lets get this aorta and valve fixed before they blow on me ..

that is my main reason for being here...thanks again...

 

[PJmomrunner]

Yeah, sometimes seeing all one's aches and pains in print is daunting. It sure does sound like you've got some autoimmune and/or tissue disorder(s) going on.

Off to bed. 2 a.m. here. Ugh...tomorrow's gonna come too soon...er...it's here !