Hi Heart Valve community! I am in an unusual situation and am hoping to connect with someone who may have been (or is) in my shoes. I was born with Bicuspid ...Read more
Hi Heart Valve community! I am in an unusual situation and am hoping to connect with someone who may have been (or is) in my shoes. I was born with Bicuspid Aortic Valve Stenosis and Coarctation of the Aorta. My valve was repaired when I was 8 years old and the coarctation was also repaired. I am currently in the moderate range for aortic stenosis and have a moderately dilated ascending aorta aneurysm measuring at 4.5cm. My unusual situation is that my husband and I want to start a family and it is highly recommended that I have surgery before I get pregnant. This means I am essentially ‘electing’ to have surgery before my heart is “ready.” My cardiologist predicts that I will need surgery in the next five years based on the trends in my scans, but this decision has still been very difficult for me to make. I am wondering if there are any other women out there who have been in this situation. I would really appreciate the opportunity to connect with someone else who has navigated a similar process. I should have mentioned that I will be having the Ross Procedure, so even better if I can connect with someone who has also had this specific procedure.
Sarah Robben Hey Lauren! Our stories are very similar! I was born with a bicuspid aortic valve and later developed ... Read more
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 simi ... Read more
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 aort ... Read more
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 ... Read more
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.
I am in an unusual situation and am hoping to connect with someone who may have been (or is) in my shoes. I was born with Bicuspid ...Read more
I am in an unusual situation and am hoping to connect with someone who may have been (or is) in my shoes. I was born with Bicuspid Aortic Valve Stenosis and Coarctation of the Aorta. My valve was repaired when I was 8 years old and the coarctation was also repaired.
I am currently in the moderate range for aortic stenosis and have a moderately dilated ascending aorta aneurysm measuring at 4.5cm.
My unusual situation is that my husband and I want to start a family and it is highly recommended that I have surgery before I get pregnant. This means I am essentially ‘electing’ to have surgery before my heart is “ready.” My cardiologist predicts that I will need surgery in the next five years based on the trends in my scans, but this decision has still been very difficult for me to make.
I am wondering if there are any other women out there who have been in this situation. I would really appreciate the opportunity to connect with someone else who has navigated a similar process.
I should have mentioned that I will be having the Ross Procedure, so even better if I can connect with someone who has also had this specific procedure.
I am just about 8 weeks post op from Ross procedure. I was also born with bicuspid aort ... Read more
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!