I understand your concerns - no one wants to hear they have a hole in their heart, and your symptoms add to the difficult feelings. I'm sorry you are going through this. The good news is this can sometimes be quite benign.
I'd suggest you ask your doctor's office for a copy of your records or ask the office for your exact medical diagnosis. Your cardiologist likely did a cardiac echo which diagnoses what type of hole you have in your heart.
Since you are age 40 and based on your symptoms, it is most likely this is an atrial septal defect (ASD), but that can be either ostium secundum, ASD, the most common form, or an ostium primum ASD. Another possibility is a patent foramen ovale that didn't close completely during fetal development.
If this is one of the above, all of these are congenital heart conditions and the hole is located between the upper chambers of the heart (atria), and thus can go undiagnosed much longer than when the hole occurs between the ventricles. If it is an ASD, about 70% of undiagnosed persons start having symptoms around age 40. 10-20% of people with an ASD will also have a prolapsed mitral valve, and that can cause the type of symptoms you describe.
There is some controversy about closing small ASDs, though many cardiologist do recommend closing these, and small ASDs can be closed with a balloon via catheter now, so surgery is not always necessary.
But before we go there, the first step is to understand exactly what type of hole you have in your heart. If you want to take that step, write back and I'd be happy to help you consider some of the options open to you.
Best wishes to you, Sue Salisbury RN - Maui Hawaii
Thank you for your feedback. My echo report says overall grade 1 systolic function and inter- atrial septum aneurysmal with left to right shunting. Trace physiological pulmonary and tricuspid regurgitation. I was told to stay on 2,5mg bisoprolol daily. Is a second opinion necessary? My cardiologist is very evasive and insists I should give the medication a try for the next few months. I'm just frustrated because I need more options and don't really want to be on meds unnecessarily. Still have short breath, fatigue, cramps in chest and arm. I need more answers. There is a prominent history of heart problems on both sides of my mum and dad's family. I'm also scared to travel as I blacked out last year on a flight cos I felt I couldn't breath. At my wits end !!!
Thanks for posting a few of your echo findings. That helps clarify some things, but also raises some questions. The most important finding you mention is the left to right shunting, since that means some blood is flowing through the upper chambers of your heart (atria) from the higher pressure left side to the lower-pressure right side. That is explained below. There are two types of 'holes' in the atria, atrial septal defects (ASD), patent foramen ovale (PFO). Sometimes an atrial septal aneurysm (ASA) can lead to an opening between the chambers when it is combined with an ASD or PFO, so it would be helpful if your cardiologist could explain this to you.
In general, if you do not feel you can communicate well with your cardiologist it is worthwhile to get a second opinion from another cardiologist. This is your heart and your life, so worth getting a doctor you can work with, and doctors understand not every doctor-patient combination is a good mix. You can find a good patient-oriented cardiologist by telling your primary physician the type of cardiologist you'd like to see, or asking a cardiac nurse practitioner who works in a good hospital in your town for suggestions, or talking to American Heart Association staff in your town, since those folks are likely to have had dealings with cardiologists. If you can travel (I know you said it is a problem), centers with excellent reputations in cardiology include Cleveland Clinic in Ohio, Mayo Clinic in Minnesota, Johns Hopkins Hospital in Baltimore Maryland, Stanford University in California, and many others. If you let me know your state, I can give you some ideas of what is close to you.
It is a very complex question of when ASD, PFO, or ASA's should be treated. You have symptoms, are young, and that generally pushes the decision towards treatment. THe medicine you are taking, bisoprolol, is typically used for high blood pressure, but can be used for other reasons, too. But it won't resolve the basic questions you are asking about what to do next.
Here is a very brief explanation of the normal heart blood flow, to help you understand your own heart. The right and left sides of the heart work harmoniously. The atria are the upper chambers of the heart. The right atrium is filled by oxygen-poor blood coming from the body. The left atrium is filled with oxygen rich blood coming from the lungs.
When the atria contract (squeeze), blood moves from the top chambers to the bottom chambers of the heart. Specifically, the right atrium pushes blood into the right ventricle and the left atrium pushes blood into the left ventricle. The valve through which this happens on the right is the tricusid, on the left is the mitral valve. It is important those valves don't leak or prolapse, so blood stays where it belongs in the lower chambers, and pressure can build adequately for the next important contraction of the ventricles.
When the ventricles contract, the right side pushes blood through the pulmonic valve to the lungs to get rid of carbon dioxide and instead get oxygen, and on the left, the now oxygen rich blood from the lungs is pushed out to the body through the aortic valve.
The pressures that build in the left side of the heart are expected to be greater than on the right, since it takes more work to push blood to the body than to the delicate lungs.
Now back to your situation. In a left to right shunt, some amount of the oxygen-rich blood from the lungs is going back into the right side of the heart rather than pushing out to the body. This can potentially overfill the right side of the heart, and can reduces the amount of oxgen rich blood moving out to the body.
Normally an atrial septal aneurysm, as you mention, is not a hole in itself, but rather a pouching from weakened tissue in the septum making the septum floppy. However, sometimes a secundum ASD, or more commonly, a PFO coexists in with an atrial septal aneurysm, In some series, as many as 60% of patients with PFO have a concomitant atrial septal aneurysm. This is important to sort out, as treatment decisions vary depending on which mechanism is occurring for you, the degree of blood shunting, the ratio of pulmonary blood flow to systemic flow, the existence of right atrial enlargement, the size of the opening, the feasibility of repair, the potential risk of stroke if not repaired, the impact of your symptoms on your life, etc.
If you wish to read further, I found this excellent article via Google. "When and how to fix a ‘hole in the heart’: Approach to ASD and PFO" by Richard A. Krasuski, MD, Director of Adult Congenital Heart Disease Services, Division of Cardiovascular Medicine, Cleveland Clinic. He mentions it is usually easy to differentiate ASD from PFO "if the interatrial septum can be adequately imaged, typically with transesophageal echocardiography (TEE)." I'm not sure if your echo was transthoracic (heart views taken across the chest wall) or transesophogeal (views taken after a tube is placed down your throat to see the heart more directly).
I wish you well, and hope you do follow up with a cardiologist that is willing to help you understand your complicated situation. Let me know how you do.
Sue Salisbury, RN
A lot of positive feedback and great information. Thank you! I'm in Ontario. I have managed to get a referral to see another cardiologist and I'm really looking forward to a second opinion. I may have to do more tests including another echo. I'm not sure what kind but previously had the scan of the heart via the chest wall. I feel very sleepy every day and I don't know if this is related or should be mentioned. My sleep pattern has drastically changed over the past few months. I fall into a very deep sleep and I'm usually very light sleeper. My right ventricular systolic pressure was estimated at 33mmHg (RA = 10) . Is that normal?
I'm so glad to hear you are getting a second opinion. And I hope you can see a cardiologist that specializes in adult congenital heart disease. That is a specialty likely to help you the most, since congenital heart disease in adults is often complex. Don't hesitate to push for a specialist to run down your best options.
Your pressures are a bit higher than normal, though measurements can vary some in transthoracic cardiac echo. Typically, right ventricular systolic pressure is expected to be below 25 and right atrial mean pressure is expected to be below 5 mmHg.
And yes, definitely mention the change in your sleep patterns to your cardiologist during your new consult. Your cardiologist will likely quiz you about a range of symptoms.
I'm not very familiar with Canadian cardiology centers (other than McGill University in Toronto), but Canada has a Canadian Adult Congenital Heart Network, and this site lists several clinics and professionals in Ontario and Quebec. I'm not sure how close any of those locations are to you, but you may want to take a look at their website at cachnet.org.
Keep me posted on how you are doing.
Aloha, Sue Salisbury Maui Hawaii