Diagnosed in 2008 with Bi Cuspid Valve and now aneursym!

[malibu82]

First let me start off by saying I am so happy I found this site! I never thought there would be a forum dedicated to these heart problems. Thank goodness!

I always knew I had a heart murmur, some doctors could hear it, some couldn't. At a yearly physical, the doctor heard it and sent me to get an echocardiogram. During that exam in February 2008 they found I had a bicuspid aortic valve. The cardiologist I saw after to read me the results of the echo told me that I had the BAV, and that it didn't mean anything different for me, and that only SOME people need to have surgery later in life due to having one. Sent me on my way. By the way the cardiologist I saw is part of a group practice that is known to be the best in my area. I live in a Chicago suburb.

Anyhow, I got pregnant that March, had a baby in December of 2008, and then had another baby in December of 2009 (4 weeks ago). On December 12 2009, 5 days after giving birth, I got the worst headache in my life. I could feel my heartbeat in my head and I could not function. I had no choice but to go to the E.R. My husband took me, they did ct scans and mri's and ultrasounds. They couldn't explain my headache but I was feeling better because they put me on a Demerol drip.... They told me my gallbladder was bad and they would remove it the next day! I was shocked because I had no gallbladder symptoms. They also mentioned something about my heart, and I didn't understand the lingo or elaborate because they didn't make a big deal about it, and I was in so much pain I could careless. So the next morning my internist came in to talk to me about my gallbladder surgery. So we talked and he was walking out the door when he said oh yeah, lets talk about your aneurysm. I was shocked. I was like my what?!?!? He said yeah, you have an aneurysm on your ascending heart valve and drew a little picture for me on the dry erase board. I was in such shock.

He told me if I survived having 2 babies in one year, I was doing pretty good. He said the size of the aneurysm was 4.5cm. So fast forward, I followed up with his cardiologist that he recommended to me, which happened to be the same cardiologist I had seen in February of 2008.

I had all my reports sent to him, including the echo from 2008. At the visit with the cardiologist last week, he told me that in 2008 my aneursym was 4.2cm and that it is now 4.8cm. I was once again shocked, because in 2008 he NEVER mentioned aneurysm once. And now he is telling me it is 4.8cm and not 4.5 like they said at the hospital. He said for most people they operate at 5.5cm, but for me, they will operate at 5cm. He told me I would get the surgery at Northwestern Hospital in Chicago by Dr. McCarthy. I asked him what surgery would I as the exact name and he said it was an Aortic Valve Replacement with Ascending Valve Replacement.

He asked if I was done having kids and I told him I always wanted 4 but thank god I had 2 in the past year before I knew about this. I am 27 years old by the way. So he told me to come back in 6 months for another echo and to check growth.

Now, after all this information and having 2 little babies, I can not sit around for 6 months wondering if I am just going to burst one day. So I made an appt. with Dr. McCarthy's office for this week. I will get an echo there and they will talk to me about their opinions. I have done a lot of research on Dr. Patric McCarthy and feel very confident in his thoughts on when he thinks I should get the surgery.

Now I have been thinking, being told I can't have any more children is not something I was ready for. If nothing is wrong with my aortic valve other then it being bi cuspid, can't they just fix the aneurysm so I can have more children and worry about replacing the valve down the road? What can happen if it is not replaced? I didn't think to ask the doctor this when I was there. I will certainly ask the new doctor. It probably can't be done that way, but I am just trying to think of all of my options!

Thanks for listening, I intend on being a very active user on this site and appreciate any thoughts or opinions on my situation! You are all such an inspiration! I am scared and have so much anxiety over this. It's terrible! But I do realize what a miracle it was that I just happened to have a CT SCAN due to that horrible headache that found the aneurysm. Otherwise, I know I probably wouldn't be around much longer without that being found. Also, my headache was due to the epidural I got during labor. If I can ever have kids again, I would rather NOT get the epidural, then get the headache ever again!

Thanks for listening!

Jackie

 

[Lynlw]

wow you've have a couple busy years. IF you want to have more children tell your surgeon (who is VERY good BYthe way) depending on your valve, if they have to repair the aorta, the could either do a valve sparring and leave your own valve, if it is in good enough shape, or give you a tissue valve, that wouldn't last as long as a mechanical, but are usually advised for women who want to have children, since you need to take coumadin with the mechanical valve and that is usually not recomended for pregancy.
Ask any questuons, usually someone here can answer them

 

[ALCapshaw2]

You are certainly very fortunate to have been directed to see Dr. McCarthy for Surgery. He ranks as one of the Best of the Best for Aorta Surgery and is our moderator's HERO. In case you don't already know, Northwestern "Stole" (per Ross, our moderator) Dr. McCarthy from the Cleveland Clinic which is the #1 Rated Heart Hospital.

THE Big Deal about BiCuspid Aortic Valves and Ascending Arota Aneurisms is their high correlation with Connective Tissue Disease. IF you have this condition, it is most definitely in your best interest to have the Valve Replaced and the Aneurism repaired / Aorta Replaced in ONE operation. Having a Surgeon who KNOWS how to recognize Connective Tissue Disease and what to do about it is THE KEY to your long-term future (and again, Dr. McCarthy is very possibly the BEST in Chicago).

MY (NON-professional) opinion is that it would be best not to have more children, especially if you have a Connective Tissue Disorder, but be sure to ask Dr. McCarthy about the risks and your options. You will probably want to have your children tested when they are older (teens?) to see if they have BAV and/or develop aneurisms.

'AL Capshaw'

 

[kfay]

Jackie, Hi and welcome. I agree with Lyn...you definitely have some options if you want to have more children. You should talk to your surgeon about your desires and discuss options with him. As Lyn said, if saving your native valve is a possibility, that will be your best bet. Secondly, a tissue valve may work as well, but be aware that this will definitely mean at least one more surgery in your future as a tissue valve in someone your age isn't going to last very long. If your surgeon feels that neither of these options are a good choice for you, you could always go the surrogacy route or adoption. We have had members use both of these methods to get their children.

Best of luck to you. I hope that you can find a solution that makes you happy and keeps you healthy.

Kim

 

[Maryka]

Hi and welcome!

I always say I am glad I had my two children BEFORE my anneurysm was diagnosed. (I knew about my anneurysm from the early 1990s when it appeared in a routine chest-xray.) My children came from two marriages--a boy born when I was 21 and a girl born when I was 30. I had tried for more but my fertility had naturally declined in my 30s. I think now that this was a blessing.

I wish you the very best in the many decisions you must now make. I encouraged my daughter to have her children early (that is, before 30) because, although she has no known heart valve problems and no anneurysms, she inherited a lot of connective tissue problems through me. She, however, decided to follow the "norm" of her friends and not have her first baby until she was already past 30. I am not sure whether she will try for more babies.

I guess I would vote for you to give up on the pregnancy route for having another baby. If I were you, I would take the needs of your two little-ones as the first priority. Life without you would be very hard on those little beings!

I am glad you are here and please keep us updated on your decisions!

 

[malibu82]

Thank you for all of your responses, I truly appreciate it!

I went to Northwestern last Thursday for my consultation with the surgeon. They said at the rate my aneurysm has grown, I will need surgery by the end of the year. I now have the "luxury" of choosing when I want to have it. They will schedule it anytime from now until it grows to 5.0cm. I want it sooner then later, because of course now that I know I have this heart issue, I can not relax! I am most scared for the surgery and recovery. I can't wait to be able to say I went through it and I am fine! It will be difficult because of having a 1 month old and 13 month old and not being able to hold or pick them up. I will have to hire a nanny for them is what I am thinking. Last thing I ever would want, but I have no choice

Also, they said that with mechanical valves it is still possible to have children. The switch you from coumadin to heparin injections. You still have to be followed closely from high risk ob/gyn. But it is possible. I asked if I should even worry about that because of giving them the bi cuspid valve problem and not wanting to reproduce with that problem and they said there is only a 15% chance of passing it on. To me 15% seems like a lot. I think I will just sit tight with 2 children and consider myself very lucky. I was looking at my medical records, and when I first saw the cardiologist 2 years ago, he wrote that I should be followed very closely during any pregnancies. Well I wasn't aware of that and had two children two years in a row without seeing the heart doctor at all. I'm sure that is why my aneursym got so large so quickly!

Thanks again for your responses!

 

[deogloria11]

Hi,

You are in the same boat I was. I had six children, and didn't know I had a severe aneurysm until I was pregnant with my sixth. They had found the aneurysm on two echos at one hospital and a CT at another, and NEVER mentioned it to me. I started having chest pain, shortness of breath, and fatigue. I did research, and figured out what I had, thanks to the Bicuspid Aortic Valve Foundation. I demanded a CT even though the docs acted like I was crazy. I was right. But I couldn't have the surgery because I found out I was also pregnant (which I believe was the reason I suddenly got major symptoms). I had my baby by c-section 5 weeks early, then had the surgery a month later when my situation was worsening (they wanted to wait til I was three months out from the c-section, but that didn't happen).

Anyway, this is just my opinion, but if you want more babies, you CAN have them, and if you decide you might want more you should NOT get a mechanical valve. Here's why...I did a lot of research, talked to my doctors and surgeons, and having babies while on blood thinners is a bad idea. It's very risky. I personally wouldn't want my baby exposed to that. However, if you get an animal tissue valve like mine, and things go well, you shouldn't have any problem having more kids. My doctor told me that there would be no problem for me to have more babies. Which is saying something, because most doctors are anti-baby (trust me on this, every doctor I pass by seems to want to hold me down and sterilize me, especially the women docs, even before knowing about my heart situation). My doctor isn't anti-babies though, so he is honest with me on the risks. He said as long as I keep getting checked up on, I should be fine having more children. He's a specialist in with valve/aneurysm stuff, and he's good. He was very honest and upfront, cautious but not too cautious. A good balance in a doctor.

Now, you should know that with an animal tissue valve, they will probably want you on aspirin every day as a mild blood thinner--which they didn't tell me til AFTER the surgery. They had me on 1/4 a day, a few months out from surgery. They wanted me to stay on blood pressure meds for a while, but my blood pressure is now on the low side, so I refused that. If you stay on aspirin, you can't breastfeed...which no one told me until AFTER I had been painfully pumping milk in the hospital all those days after surgery, and was ready to go home (jerks). However, I've discovered nattokinase, which is a natural alternative, and actually dissolves blood clots instead of thinning the blood. I'm taking that now, instead.

The downside of the animal tissue valve is that you may need a new valve. In fact, you probably will. No one knows how long it will last. The average, depending on who you speak to, is 8-15 years. That should be enough to get you through most of your childbearing years. However, there are people who have gone much longer, and people who have gone much shorter. So you'd need to be prepared for both possibilities. For me personally, I don't believe in birth control, and I trust God to take care of me (I know others won't agree with my views, but they are what they are), so I opted for the tissue valve. God willing, by the time I need a new one, I'll be well out of my childbearing years (I'm 38 now). Besides, I really did NOT want an artificial valve. I don't want to be on coumadin, and I do NOT want to listen to a loud ticking mechanical valve. As much as I don't want to go through another surgery, I'm willing to do that to (hopefully) get another decade of coumadin-free, ticking-free life. Plus more wonderful babies, if that's what God has planned.

If anyone is telling you that you CAN'T have more babies, they are prejudiced or lying. You need to stay pregnancy-free right now, obviously, as pregnancy is dangerous with this condition, but if you choose a tissue valve and all goes well, you should be fine having babies. Now, you would want to be followed closely during your pregnancy, and they may want you to have a c-section (though I don't know that that is necessary...they'd probably just be covering their own butts if they want that), but you should be fine. If your doctor is saying differently, you might want to consider a second opinion, by someone who doesn't think that anyone who has more than two or three children is nuts and should be sterilized. ;-)

This is all just my opinion, but I thought I'd share, since I'm in your boat. Good luck!

Oh, one more thing. You will definitely need help after the surgery. I couldn't get out of bed without help for a while. You won't be allowed to pick up your kids for quite a while. I'm a fast healer, and I thought I'd be different. Nope. There is stuff you just can't do afterwards, for a good while. I couldn't even hold my one-month old, even with my arm propped up. A wiggling toddler would be impossible. I was fortunate, my husband had lost his job (thank God for unemployment). It was really a blessing in disguise, because there were no relatives or friends able or willing to help, and a nanny would have been out of the question. I would plan to have help full time for at least a month, and probably part time a month after that, unless your husband is willing to do all the household work for you. You may not need help that long, but plan for that. You may have complications, or more pain than most, and I know being a full time mom is much more physically and emotionally demanding than many jobs. ;-)

 

[deogloria11]

One more thing (LOL I know, I ramble). I noticed you said you might not want more because of the risk of passing this on. I would just mention this...do you wish your mom hadn't had you, and "saddled" you with this problem? Just something to think about. I am SO glad my mom had me, and if she'd known that she could pass this on, I would hope she would still have me. I am special and wonderful (not bragging, just saying we're all special) and I have a lot to offer. So do each of my children. I'd go through that surgery ten times rather than not exist! (Otherwise I wouldn't have had the surgery, I'd have just let the aneurysm burst!) I'm not telling you what's right for you, just giving you a different perspective.

Also, having your children may have had nothing to do with the aneurysm growing. According to my old echos, in the time between the first echo that the aneurysm was noticed (and never mentioned to me...grrrr), and the time I figured out I had it and demanded a CT, it had virtually not changed at all, despite having two more children in that time. Chances are, I've had it for many years, probably even before I had kids. I'd had no symptoms from the aneurysm during the first 5 pregnancies, some mild symptoms (in retrospect) after that 5th one, and then major symptoms immediately upon getting pregnant with the 6th. You just never know.

 

[Gail in Ca]

My first and only child was 2 when my aortic aneurysm was found, along with a very leaky aortic valve. After surgery, with a porcine valve and dacron graft, my surgeon recommended that I not have any more children.
I remember exactly what he said. "You have one healthy child, be thankful for that," and I was and still am. She has always been a joy.