im 24yr old female 118lbs 5'2'' , followed by Duke University Medical Center. Had surgery at 7wks for PDA, had sugery in 04 aortic aneurysm 4.6cm valve sparing. now have transverse aortic aneurysm measuring 4.8cm, coarctation of aorta, mod-sev BAV stenosis left ventricle dilation measuring 6.2cm, I am suppose to get a MRI done in september and see my cardiologist right afterwards. My question is when does all this finally get to the point that I need surgery again. Ive been having some SOB and chest pain. I am extremely worried and scared to death that one day my aneurysm is going to rupture or my valve is just going to cause heart failure. when do we start to worry and what point do I need surgery. Im 24 and had a horrible experience with my surgery at 20 had alot of complications including pericarditis, blood transfusions. I was in the hosp for about 1 month. Also would I ever be able to have a safe pregnancy if I dont get this fixed?? I want to have children but not if its going to risk my life or my childs. please help ease my mind somewhat...anyone else that has anything else to offer would be great too!!!
You have a lot of both congenital and acquired cardiac problems that can occur together. Bicuspid aortic valve (BAV) and coarctation of the aorta (CoA) frequently occur together. However, I can’t tell by your history if you have coarctation of the aorta now, or had it repaired. The aortic dilation and aneurysm also occurs with BAV. We don’t have specific information about the risks for aortic dilation in BAV. In fact, we often use the data from Marfan syndrome, which has similar findings of aortic dilation, as the benchmark for when to intervene. We typically intervene at 5 cm dilation, although depending on findings and other complications within the heart, this may be earlier at a smaller diameter.
It certainly sounds like you have other things going on, including the stenosis of the aortic valve. However, aortic stenosis typically does not cause left ventricular dilation (enlargement), so I am not sure how you have this. In fact, it usually causes left ventricular hypertrophy (thickening). Usually, aortic valve insufficiency causes the ventricular enlargement. I will say that with your propensity to dilate your aorta fairly easily, your risk of further aortic dilation and rupture with pregnancy and delivery is probably higher than normal. That said, if you have moderate to severe aortic stenosis and have a residual significant coarctation of the aorta, I would definitely not even consider pregnancy until these issues are resolved. The big problem there, though, is that if your aortic valve is replaced, there are two main options. A mechanical valve could be placed, but that would require lifelong anticoagulation therapy, which is contraindicated in pregnancy. There are ways to substitute heparin for the oral anticoagulant during this time, but that would have to be worked out with your cardiologist and obstetrician. The other option is to place a tissue valve, which would not need anticoagulation. However, these do not last for a lifetime, and can wear out fairly quickly (i.e. less than 5-10 years in adults). Either way, though, you will very likely require a surgical intervention, and possibly sooner than later.
Overall, your clinical picture is confusing to me, just because I don’t have enough information, so I can’t tell what needs to happen next at this point. The first thing that I would do is to discuss these issues with your primary cardiologist at Duke. You need to be frank with him or her and find out what the issues are regarding your defects and abnormalities, and how they affect both your personal risk as well as your chances for pregnancy. If you are not satisfied with the information that you are getting, you can certainly get a second opinion from an adult congenital heart disease specialist at another institution. Finally, the one thing that I always tell my patients with aortic valve disease is that it is a disease for life. This means that there will always be something wrong in some capacity. We in the cardiology and cardiac surgery community can try to improve things as best as possible, but they will not be able to be made perfect, or even near-perfect. You will require lifelong adult congenital heart disease specialty follow-up for this.
Thanks for your input. I know my medical history is alittle confusing, I still cant believe I have to deal with all of this myself. So you pretty much confimed what I have thought all this time. I never thought I would be able to get pregnant and have a "safe" pregnancy. Ive been told it would either put my life at risk or my childs life. I know and I know my family and boyfriend would never want me to go through that.
Is it also true that I should restricted to lifting no more than 20lbs??. My lifelong goal is to get into nursing school but Im not sure I could get in due to my heart problems and all that is wrong. Im not sure I could take the stress and frankly I dont think a nursing program would accept me. Ive been told I'd be too much of a liability.
I know I should trust the Duke doctors as they did save my life once when they performed my surgery at 20. That was pretty much an emergency basis. I think that is why Im so scared and cant but think that my aneurysm is going to rupture and valve is just going to cause heart failure. Do surgeons nornally wait till stenosis reaches severe range before they operate?? Ive seen so many case on this forum that have similar circumstances but not quite as many problems as me and they have had surgery. Im starting to wonder if they are so worried b/c of all of my complications.
Ive been told that the probability of death is alot higher in this type of surgery especially since it involves alot of the major vessels and the transverse arch. I forgot to mention that my pulmonary veins are also enlarged, Do the risk of waiting outweigh the risk of surgery when you have all of these problems like mine???... Im also thinking about contacting my surgeon who is a pediatric cardio thoracic surgeon at Duke to get his opinion. Once again, thanks for your input.
Again, not being able to fully evaluate you does not allow me to ideally answer your questions regarding your weightlifting restrictions as well as the risks of waiting vs. the risks of surgery. Certainly, your cardiologist, who knows you much better than I do, has evaluated the risks and benefits, and can have that discussion with you, as can your surgeon at Duke.
In regard to the timing of intervention for aortic valve stenosis, lots of factors are taken into account when this is considered, including what the rest of the heart looks like (getting thickened or demonstrating other damage), what other cardiac problems or systemic problems are simultaneously happening, what the expected short- and long-term outcomes and goals will be, plans for pregnancy, etc. I would definitely speak with your local doctors in Durham and make sure that all your questions are adequately answered. I recommend that you write down all of your questions ahead of time, so that you're not walking out the door to your car and realize one that you forgot.
What a tremendous amount of information you passed along Dr., how wonderful of you to take that kind of time.
I recently found out that I have a BAV, 5 years ago at 52 years of age. Other than hypothyroidism, I'm in pretty good health. In a yearly check 4 years ago with the BAV, a 4.5 cm ascending Aorta Anneurysm was found. I have had CT's, MRI, and a 64 slice. My yearly test is coming up and wonder which test you think if most reliabel. The 64 slice certainly gave quite a bit more information than the CT or MRI.
I take Verpamil and Metaprolol twice a day, as a result, I am constantly tired, and have gained 25 lbs in three years time. At 5.9, I can almost carry the 180 lbs. I still go to the gym 3-4 days a week doing cardio and weight, but it seems to be getting more and more difficult.
Just to clarify--a "64 slice" is a CT scan. It uses radiation, as opposed to MRI, which uses magnets in its imaging. As far as what gives more information, it depends on what you are looking for. If you are looking at the coronary arteries, which at 57 starts to be more of an issue, then that is a better study. However, if you are looking at the aorta and assessing its dilation, there really shouldn't be any need to have the extra irradiation associated with the CT scan. This is something you will have to discuss with your cardiologist to see which is being emphasized. I will say that, despite the pretty pictures made by CT scanners AND despite the improvements in technology that have decreased the overall amount of delivered radiation, it would be advisable to avoid unnecessary irradiation as much as possible.
In regards to your present health status, I am not sure why you are on both verapamil and metoprolol, and obviously don't have all of your cardiac information to determine this. I will say that metoprolol, which is a beta blocker, does have fatigue and exercise intolerance as side effects. Your weight-for-height is also above where it needs to be, which will add to your fatigue. I do recommend attempting to bring your weight down, which will not only help how you feel but will also help your heart. Realize that these are permanent lifestyle changes, and not something that you would be doing for 1 or 6 or even 12 months. Dietary interventions including elimination of fast food, fried food, fatty food, and sodas; eating more fruits and vegetables; decreasing dairy fat content to skim or fat-free; using baking, broiling, or steaming for cooking (not frying); and, above all, smaller portion sizes. A portion size is the size of the palm of your hand, and you only get firsts (no seconds/thirds). Exercise interventions include doing aerobic exercise (walking, running, swimming, bicycling, basketball, etc.) for 60 minutes on a daily basis. The weight training that you are doing should be low weights with high repetitions (i.e. 3 sets of 15-20 repetitions), and not heavy weights.
Finally, there is some emerging research that demonstrates that potentially angiotensin receptor blockers (ARB's) and possibly angiotensin converting enzyme inhibitors (ACE inhibitors) may be helpful in preventing progression of aortic dilation. The Pediatric Heart Network is performing a research study in Marfan syndrome patients comparing a beta blocker with an ARB; we should see data on this in the next few years. You may consider discussing this with your cardiologist and see if it would be worthwhile to change your beta blocker out; obviously, without knowing your specific information, there may be more reason to have you on the metoprolol than what I can see here.
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