Lauren's Journal

Sarah Robben  Hey Lauren! Our stories are very similar! I was born with a bicuspid aortic valve and later developed an ascending aortic aneurysm. I recently had the Ross Procedure and my aneurysm repaired on January 5th, but it was not easy to get to that point. We met with several cardiologists as well as a maternal fetal medicine team to try to find answers about the risks of pregnancy before heart surgery/to see if it would be better to wait until after heart surgery. Some cardiologists didn’t have an answer for us and so we referred to other cardiologists and specialists. At one point we were told that surgery would be considered “elective”, which is crazy to me, but after finding and then meeting with my surgeon, he assured us that this was no “elective” surgery. According to his research and knowledge he predicted my aneurysm would burst in 3 years. After speaking with his team and my insurance company, my proposed surgery was run through and pre-authorized. As of right now, the surgery has all been covered minus my deductible. I’ve heard from several cardiologists to wait 6 months before trying to conceive but others have said wait a year. Only time will tell. I hope this helps, and if you have any other questions I would be happy to try to answer! 

Lauren Lopez  Hi Sarah- Thank you so much for your response. I knew there had to be other women out there in a similar situation. When I say my my surgery is 'elective' I really mean that it's a choice I have to make if I want to have to have children right now--there aren't any issues with insurance because it would be considered medically necessary if I were to get pregnant right now. I am just having a very hard time with choosing to have surgery sooner than my heart needs it and also just have logical fears around the surgery itself. Can I ask how recovery has been for you? I'm not sure how old you are, but I am 36 and am hopeful that recovery won't be too terrible, but you never know! 

David Funk  Hi Lauren 
I am just about 8 weeks post op from Ross procedure. I was also born with bicuspid aortic valve. Stenosis and aortic aneurism. I Found out 15 years ago I had valve issue. I’m 45.  So far recovery has been great. They say about a year to get yourself back to pre surgery form.  I don’t know stats on pregnancy pre or post op but I’m sure you are reading up on it. 
couple things to consider: as your heart continues of this path, your body,organs etc will have to work little harder to compensate for deficiency. Do you have any symptoms? There will be that intersection where your heart issue will start to outweigh your bodies ability to compensate and symptoms may increase. 
When I was 40 I had no idea that I would need surgery at 45..  I was thinking 50’s. 
Tough decisions I know… I would reach out to the surgeons who specialize in Ross and get their views. Best of luck! Reach out if you have any questions about the procedure from a patients view! 

Sarah Robben  You are not alone, Lauren! When my husband and I met with a maternal fetal medicine team, they highly recommended that I also get surgery before trying to have children. I just looked back at my notes from that appointment and here are some things I learned that stuck out to me: Pregnancy would be considered high risk for me and the baby since pregnancy makes your heart work harder. I would have to be monitored very closely during this time and have a lot of ECHOS, fetal ECHOs, and MRIs. The baby would have to be delivered at 37 weeks and be delivered at a Level 3 or 4 maternity hospital with the possibility of me needing to go into emergency surgery if something should go wrong during delivery. Another good point I thought the maternal fetal medicine team had was if I did get pregnant and had a child before heart surgery but then needed heart surgery a few years later, things would be a lot more stressful and complicated. I still have about another 5 weeks with my sternal precautions, so if I had had a child right now there’s no way I would be able to carry them, lift them up to put them in the high chair, on the changing table, in their crib, etc. My husband works full time, so we would basically need someone else living with us to help take care of the child/me when I first came home from the hospital. My husband and I have both discussed that we honestly can’t imagine trying to take care of a child right now with my sternal precautions and low energy level/stamina. This is just my opinion/take on things but I hope it helps! As far as recovery, I’m not going to lie, my time in the hospital and the first week at home were rough (I had a lot of side effects from the anesthesia as well as back pain and right leg numbness/pain). Each week though, those side effects have slowly eased up and I definitely feel better. Since surgery, I have become more independent taking care of myself which has kept me positive during recovery. I still have a long way to go, but I am thankful my surgery is done, and I can focus on the future.

Lauren Lopez  Hi Sarah! Sorry for the delayed response. I wish this site sent notifications! Thank you SO much for all of the helpful information. I have been highly advised not to get pregnant for all the same reasons you mentioned above. The most challenging part about all of this is the fact that I have to choose to have this surgery when my valve doesn't quite 'need' it yet (I'm still in the moderate range and my aneurysm has been very gradually growing in diameter). I do think I have been starting to have symptoms though, especially with exercise. Although, I often down play the symptoms as not being as in shape as I used to be, but I'm just not sure. Do you mind if I ask you what your experience was (if any) with symptoms before your surgery? Again, thank you so much for all your help. It's so comforting to know their is another woman out there who is in my exact same position. I'll be sure to check this thread regularly too so I don't miss a message from you. -Lauren

Sarah Robben  No worries at all! I'm sorry my response is delayed since I haven't checked the site in a while. So happy to hear from you! You are not alone, and I'd be happy to answer any and all questions! Let me take a look back at some of MD notes on my heart before surgery and then I'll reply to this thread!

Sarah Robben  Have you met with a surgeon? My regular cardiologist, women’s health cardiologist, and the cardiologists with the maternal fetal medicine team believed my surgery was not needed yet. I had no symptoms other than general fatigue which I’ve had pretty much my whole life. It wasn’t until I met with a cardiothoracic surgeon that I learned I should have the surgery due to the size of my aneurysm.When I had my first consultation with my cardiothoracic surgeon in August of 2022, I had severe aortic insufficiency and moderate stenosis. My ascending aortic anuerysm measured 4.9cm. Based on research and on my body surface area of 1.7 (I'm 5ft, 7 inches and 135lbs) he said that put me in the moderate risk category for dissection or rupture just based on my aortic size alone.  

Lauren Lopez  Hi Sarah- yes, I have met with a surgeon (UCLA) and have had the same cardiologist for five years now. When I met with the surgeon and cardiologist there has never been a push for me to have the surgery based on my numbers alone. I have similar measurements as you though and am also the same height and weight. I feel fatigued regularly and equate it to getting older, but now I am thinking it may be correlated to my heart. How are you feeling after surgery? Are there noticeable changes in your energy level and exercise capacity?  Thanks again! 

Sarah Robben  It is so interesting that different medical experts have different opinions on such similar issues! My surgeon told me that based on my current valve function, aneurysm measurements, weight, and height he predicted my aneurysm would burst within 3 years. His prediction was based on research from Yale I believe as well as from his experience. Honestly, I was relieved when he told me I should proceed with surgery, because I didn’t have to worry anymore about WHEN I would need surgery and WHEN my aneurysm would burst. I was definitely always tired prior to my surgery, and I do think it was cardiac related. Before surgery, I could sleep 10-12 hours a night and then still take a 2 hour nap during the day. After surgery, I’m still tired but I attribute that to my heart and body still recovering from major surgery. I can definitely feel more energy, endurance, and strength with each month that passes by though. I am currently 6 months post surgery and was told that it would take about a year to get me back to 100%. I was able to start back at my physically demanding job as an OT in a SNF about 4 months after surgery. I'm so happy to hear from you, and would be glad to answer any other questions you have!