very new here

[tabitha887]

First let me tell me my story. I am 24 years old had a heart mumor since I was born, got diagonsed with aortic stenios when I was 21. Was told I wouldn't need surgery unless it got worse or if I had symtoms. I got pregnant with my first child when I was 23 she is now almost 5 months. I had a very diffucult last trimester of pregnancy do to High blood pressure, had to be on bed rest for the last 3 months of my pregnancy. I was also on blood pressure medicine. I had to have a C section, Blood pressure spiked to 200/120 during my C-section. I now have aortic regurgitation, still have no symtoms. Blood pressure went completly back to normal after my pregnancy. No one told me I shouldnt have gotten pregnant, at all. They told me I needed to have surgery which I haven't yet since I still have a baby and I am breastfeeding. They told me they wanted to to do the Ross Procedure, which really scares me because I can't be out of commison that long. I really would like more information about the minamally invasive replacement surgery.Also what is the risk for me to put off surgery. Cardologist told me that since I had no symtoms could be months or even years before my heart fails,they are really pushing me to have surgery. Even with no symtoms. Plus No Mechnical valve either because we would like to have a brother or sister for our Daughter.

 

[dick0236]

.......Also what is the risk for me to put off surgery. Cardologist told me that since I had no symtoms could be months or even years before my heart fails,they are really pushing me to have surgery. Even with no symtoms. Plus No Mechnical valve either because we would like to have a brother or sister for our Daughter.

Welcome Tabitha887. If your Cardiologist is "pushing" for surgery now, he/she must feel that the risk is serious. I would talk with a surgeon and get an additional opinion. I know nothing about the childbirth, but I have heard that it can be more difficult when on Warfarin. Perhaps a tissue falve now would be best since you want additional children (I'll let the ladies answer that). From what I understand, a tissue valve in a young person will only last a fairly short time and you could get a mechanical valve next time....for the long haul. Continue educating yourself, and when the time comes you will know what to do. FWIW, heart surgery is not that big of a deal anymore. The real risk is putting off the surgery until it becomes a BIG DEAL.

PS: Many of us (including me) had no apparent symptons prior to surgery.

 

[MS2]

Hi Tabitha...like Dick said, if your cardiologist feels that it is time for you to have surgery, even though you do not have any symptoms, then it is time to have surgery. I just turned 27 years old, found out that I had aortic regurgitation in June of 2010 by freak accident (went in for a physical exam for school and my doctor heard a heart murmur) and I am asymptomatic as well. My cardiologist wants me to have the surgery by this summer, if not by the end of this year. My heart is in good shape otherwise (no left ventricular hypertrophy, no aortic dilation/aneurysm, etc), so he wants me to have this done before any of those develop as it could cause further complications.

You are correct about avoiding a mechanical valve if you plan on having children in the future. It is not the valve the complicates pregnancies, but the anti-coagulants warfarin (coumadin) that cause complications in the pregnancy and development of the fetus.

My advice would be to research and do all the preparations you would need to do before a surgery, so that when the time comes and you definitely need it...you have everything in place (such as a surgeon, family plan, support, all questions answered, etc.).

 

[queenie]

Tabitha, I am so sorry you are in this position. I have had two Valve replacements six years apart and the last was 3 years ago. The first time I had two teenagers and two small children, 7 & 8 and I home schooled. My best advice to you is to get a second and maybe a third opinion so you can feel confident with your decisions. There is criteria for the timing of surgery. If you need the surgery now, you are ensuring your child a healthy mother for years to come. I'm not saying its going to be easy, but totally worth it to be around for him or her. You're just beginning motherhood and it is the greatest gift ever!!!!

 

[chaconne]

Tabitha,

Is your doctor concerned that another pregnancy would cause serious problems if you don't have surgery before? If not, you might find out about waiting a few years until after pregnancies

The Ross procedure could be a good option for you if you qualify. This method seems to have fallen out of favor among surgeons recently because it involves a double valve replacement (your pulmonary valve becomes your aortic valve, your pulmonary replaced by xenograft...). I've heard the Ross procedure outlasts a normal tissue replacement (average > 20 years?).

 

[rubywhistle]

Hi Tabitha

Firstly congrats on your baby girl!

It seems like we may have a bit in common - Im 24, I have mitral regurgitation from murmur since birth and I have a baby girl myself.

So just to try to help (if I can) you said you have aortic regurgitation but did not mention the level eg mild moderate severe. This is usually what the Drs use to decide on need for surgery and when. I was told the problem with ME waiting for any longer is the leaking damaging the heart ventricle by making it bigger then it needs to be – BUT I have very severe leaking and this process is already happening. If however you are not severe or moderate-severe but have less regurgitation then waiting MAY not be so bad for you. (Disclaimer some valves go bad FAST and it could be your Drs are planning on scheduling it 3 months or more down the track anyway. Having another baby before surgery would be dangerous (well this is what Drs have told me) and they recommend waiting quite a bit after surgery to make sure its fitting in and strong enough to support us and a bub.

You said you had no symptoms – these are tricky sometimes our bodies compensate a bit too well or especially when we are busy mothers our minds are powering through over matter. Well this is what I have been told happened to me I am apparently not supposed to be able to do much at all but I have to. ‘Shouldn’t be able’ to walk up two flights of stairs let alone do four with groceries and a baby but we do what we have to. My symptoms did hit me eventually all at once though and it is not pleasant but I still don’t feel ‘sick enough’ for all this fuss some days.

I understand wanting more babies I too have chosen the tissue valve hoping that I will get off warfarin and be able to have another. But its not an easy choice.

I am up for surgery in the next few days and had the same concerns as you do about being out of action for the length of time. But just on a side note I think I am going to find it harder now that mine is walking and toilet training – I wont be able to chase her around or lift her on and off the toilet and will need people at our place for at least six weeks to mind her even when I am feeling a bit better. It might be an idea to go in now while your little one is still a baby it… might sound odd because I know babies are demanding in different ways to toddlers but you can still watch them play and roll (and soon crawl a bit) without having to worry about them jumping, climbing, wielding kitchen utensils.

I have a roster of childcare for two days a week then nanas, aunties and my partner has got time off work so we are blessed with carers but I am worried about other people minding her even though I know them well – its mostly little things like her getting out of routine, falling down the stairs at her nans and eating too much junk food. But the big one is me not being available to her to being the fun one anymore.

Anyways I too opted for minimal invasion so I could be up and about quicker. My surgeon is giving the minimally invasive way a go the ribs way- slightly higher risk for stroke this way 1.5% more. I am not sure if the can do aortic this way? Sorry all my info is about mitral! Some folks on here have mini scars instead of the long ones on the sternum too, and I know the aortic valvers will chime in soon to give you info on all your questions.
Phew I was not expecting this to be an essay

Best of luck

Let us know how it goes

Ruby

 

[Bina]

hello and welcome. Cardiologists will usually follow aortic stenosis closely by doing echocardiograms (ultrasound
of the heart). You may get this test annually or every 6 months, depending on the severity of your condition and
the measurements recorded.
My murmur was discovered at around age 20, then I gave birth at age 26, finally surgery was at age 46.

 

[Michellemar]

My aortic replacement valve was done minimally invasive...however, that's just one valve. There is a book out by a guy, Nick-(?) on heart valve surgery- it's usually on my google page and I end up on his site instead of this one - something like heart vale surgery... Anyhow he had both the mitral and aortic done, and his book which I got from his site and read it online, gave me lots of info prior to surgery... His Dr. (by coincidence mine too.. Dr. Starnes)... Had (atUSC) not only minimal but machine-kind-of-bionic mitral valve replacement,... You might wantvto look it up. Nick Adams is the heart valve replacement guy's name...he does a lot of Card Drs.' interviews you can see online too - I mean, I started there before I came here and gave me a good baseline to hear the terrific people here on THIS site.(!)

 

[Kelly]

Hi Tabitha, I had the Ross proceedure in 2002!!
I'm 26 and have a 17month old boy. I was born with aortic stenosis and had the Ross procedure when I was 17 years old. It went brilliantly, however over time the Pulmonary Valve began to narrow, especially since my pregnancy. I have just had a new Pulmonary valve put in through keyhole surgery. It lasted 9 years for me and hopefully it will be another 9 until my next one!

 

[Duffey]

Hi Tabitha.
I would get a second opinion from a cardiologist or cardiothoracic surgeon before making any decisions. It sounds to me that you had enough issues arise during your pregnancy that there is a push to have you get your valve replaced before you undergo another pregnancy. I would also want to know what diagnostic numbers they are basing their recommendation on (aortic valve opening, mean gradient, peak velocity). If you do need replacement done in the very near future, then you can decide whether you want to undergo the Ross procedure or if you'd prefer a straight forward valve replacement.
Where would you have your surgery? I'm in southeast Missouri and had my valve replaced in 2005 at Missouri Baptist in St. Louis. I had a bovine valve implanted, and so far, so good.
Best wishes going forward.
Mary

 

[Carla Marquardt]

Tabitha... I has also born with a BASand R.... I have a 10 yr old that was a completely normal preg and delivery. Afterwards there was still no change. 2 weeks ago I had to terminate my 16 week pregnancy...which has been completely devastating! I too was told that It would prob. Never effect me but boom that cocktail of being pregnant this time made everything go downhill fast! Within 3 weeks I met with about 10 doctors and two echo's and everyone told me of I did not terminate I would not see Christmas. So here we are 3 days from surgery, when I should be feeling my baby move

I would listen to them and if they are thinking you need the surgery now... Remember that your baby isn't too Mobil yet and I'm sure you have family friends or someone that would love to help! Believe me people come out of the woodwork when you tell them your having OHS. I'm getting my bovine valve on Friday and my doctor is promising me that I will be a brand new women shortly... And still maybe even will be able to have that 2012 baby.

Please feel free to message me if you have questions... About healing or anything!