Mended Hearts Open Forum

  • 1.  Young Adult with Thoracic Aortic Aneurysm

    Posted 23 days ago
    Hi everyone,

    I'm giving this a go! My name is Lala. I'm a 28 year old woman, originally from Colombia :)

    I was born with a bicuspid aortic valve, and over the last few years, I've been monitored for an aneurysm of my aortic root and ascending aorta. Honestly, I hadn't really taken this seriously before; I thought it was just one more thing about my BAV, not really taking the time to consider what it actually meant for my life.

    Fast forward to last week: I had my annual follow up with my cardiologist, and we saw that my aneurysm grew to 4.5 cm. My cardiologist told me that I shouldn't get pregnant, as my chances of dissection or rupture would be super high if I did.

    I'm honestly heartbroken (pun intended)-- I am not yet at the surgical threshold (5 cm)--but it's severe enough that I can't have kids?

    Are there any other young adults with TAA out there? If so, need a friend?

    For women who have had TAA repairs-- were you able to safely have kids after? Anyone have advice to offer?

    ------------------------------
    Lala Grau
    ------------------------------


  • 2.  RE: Young Adult with Thoracic Aortic Aneurysm

    Posted 22 days ago
    Lala,

    I'm neither young nor do I have your condition nor am I female, but I do have a suggestion.  Is it possible that you could elect to have surgery now, at 4.5 cm, and have your insurance provider still cover the cost, rather than waiting some indefinite period of time for the aneurysm to reach 5.0 cm and potentially missing out on having children?  I think you need to speak with first your cardiologist and then your health insurer about this option.  My guess is that the cardiologist would have to be able to articulate some plausible exception to the 5.0 cm rule (if that is even a rule) in order to sell the insurer on this BEFORE having surgery.

    Having said this, I do realize that this is an incredibly difficult decision even if the doctor and insurer say it is fine to have surgery now.  Do you have a standard but still difficult surgery now that you might not otherwise need anytime soon (or ever?) so you can have a baby after you recover, or do you risk not having a baby anytime soon because the aneurysm never grows to 5.0 cm and you never need surgery?  That is the second thing you need to decide.

    Please keep us posted and I hope others on this site, with more experience than me, will join this discussion.

    Ira

    ------------------------------
    Ira Reid
    Hoboken NJ
    ------------------------------



  • 3.  RE: Young Adult with Thoracic Aortic Aneurysm

    Posted 22 days ago
    Hi Lala

    I had the same diagnosis as you, BAV and aneurysm at the aortic root and ascending aorta. I had it all repaired 2 yrs ago at 38yrs old at the Cleveland Clinic in Ohio. I don't know where you are located but I would suggest sending all of your records to the Cleveland Clinic (they ended up being in network with my insurance and I live in Georgia). That is what I did and they took into account my age and surgery risk and recommended surgery when my aneurysm measured 4.7-4.8(the ct scan that I sent was 1 yr old, by the time of surgery its was 4.9-5.0). They also use some kind of formula to determine the surgical threshold that involves height, weight, etc so technically everyones thresholds are different. My wife was 5 months pregnant with our daughter which also played a factor in our decision to go ahead with the surgery so i could be on the mend when she was born.

    I had what is called a David procedure which is basically where they fix the aneurysm and repair the BAV so its functions properly instead of replacing it. They tend to do it on younger candidates when they can but it wasn't even offered as an option at the first surgeon I met with locally because there aren't a ton of doctors who can perform it. I was told that there is a good chance it will last my lifetime whereas if my valve was replaced I would have to undergo surgeries every 10-15yrs if i opted for a tissue valve.

    I'm sorry I don't know any women with the same diagnosis or I would point you in that direction. You are welcome to reach out by phone or email if you'd like and talk to me or my wife. You are in the right place because its helps tremendously to talk to people that have been through it!

    ------------------------------
    Cole Morrison
    772-215-1621
    Saint Simons Island, GA
    ------------------------------



  • 4.  RE: Young Adult with Thoracic Aortic Aneurysm

    Posted 22 days ago

    Hi Lala
    I want to share my experience with you even though we don't have the same diagnose. I'm 53 years old now. I had my 1st child at age 36. I had no idea I had a heart problem. I had all kinds of issues with that pregnancy. I ended up going into labor early. The doctors were able to keep her in until 34 weeks, but then there was no stopping her. My doctor wasn't able to really explain the situation because my placenta was healthy. By the grace of God she was a healthy premie and now a healthy teenager. My 2nd child came 15 1/2 months later…..oops. That pregnancy was much better except that I have never been so tired in my life. I slept like I never got enough sleep. Again, I had no idea I had heart problems. I had a full term pregnancy with her, but she was jaundice for a week. By the grace of God, she too is a healthy teenager! 


    Fast forward to age 49. I found out I had a large hole in my heart. I was referred to the Mayo Clinic. After my appointment with the chief cardiologist, and everything I described my pregnancy experiences, she said if she was my doctor, she would have recommended that I not have babies. I'm actually putting that conversation mildly. It was actually a very painful conversation to have. I still cry when I think about the things we talked about.

    With that being said, I'm repaired and healthy, my daughters are beautiful and healthy, I was able to survive and I have my kids. I don't know what you can take from my story, but I connected to the devastation of hearing you shouldn't have children. Honestly, I think your so young and should just live healthy for now and see what happens. Live life to the fullest and even if you don't have children for another 6 years, things my pan out in your favor naturally. 28 years old is the perfect age to travel and live carefree. You have plenty of time before you start your family. Much love and support on your heart healthy journey.
    Carrie 



    ------------------------------
    [Carrie] [Kashani]
    Parapro
    ISD
    [White Bear Lake [MN]
    Carrie
    ------------------------------



  • 5.  RE: Young Adult with Thoracic Aortic Aneurysm

    Posted 22 days ago
    Hi Lala,

    I'm a 26-year-old who is about to undergo valve repair/replacement in a couple of weeks. I've known about my bicuspid aortic valve for around ten years, and two months ago my cardiologist told me that it was time for surgery. Even though you aren't going through surgery right this moment, I know what it's like to feel about having this condition at a young age. It blows. There are so few people in our age bracket that understand how odd it is to live with the considerations of people generally decades older than us, and who have had the privilege of accumulating that much more life experience. Still, it is what it is, and at least we were lucky enough to find out about our conditions before something truly bad and irreversible happened. Just know that I read your post and it struck a chord with me; I really appreciated reading it.

    -E


    ------------------------------
    Ryan Douglas
    Ann Arbor MI
    ------------------------------