"Small" ASD testing update now shows diastolic dysfunction. :(

This is my previous question/concern


I just had another echo today and the interventional cardiologist said that these results are not related to my symptoms. He said that I am literally crippling myself with my anxiety. He wants me to push myself to exercise 5 times a week and go back in a month for a stress echo. I have not been exercising since I've had SVTs because I am always short of breath and dizzy, even at rest. I've found it troubling to even vacuum or do laundry and I am only 37. He said I am severely deconditioned from not exercising that he thinks this is why I can't breathe correctly. This shortness of breath and dizziness got very out of hand after my 1st SVT and have been bad since. Seemed very sudden, that is why I think he is saying its anxiety.

These were my current echo results:

Normal resting echo except for small secundum ASD with no RA or RV enlargement. Normal LV & RV size and function w/ LVEF=60%. Mildly dilated LA w/ grade I LV diastolic dysfunction. Estimated RVSP=30-35 mmHg which is at the upper limits normal.

He didn't even mention the diastolic dysfunction when I was at the office, I called back for an explanation. He said its very mild and my blood pressure was never that high, averaging maybe 120/80. So why on earth hast this happened? Only said I had minor PH because I brought it up. My pulmonary pressure was averaged at 34 mmHg which he said isn't that accurate on echos. (I wanted to add that I do own a pulse oximeter and am always 98%+ and do not suffer from any edema.)

After looking up further on diastolic dysfunction, I am even more anxious and scared. I feel like I am falling apart and have no idea if I should trust him because HE is THE doctor or what :( Forgive me if this is longwinded and messy, its late and I have been stressing out over this.

I'd appreciate any and all insight on the matter

thanks x

edit: wanted to add that I am on my 21st day of a 30 day holter, and he was not concerned about my results when I posted symptoms. Just some sinus tachy, no other svts or other irregularities.

Nichole, I believe you have had several opinions at this time. Have you sought medical help for the anxiety? If your doctors believe anxiety is a factor, that is the logical next step.

I apologize for reopening my discussion. The diastolic dysfunction is new to me as is the high pulmonary pressures. I've just been dealing with anxiety for so long, but not in this capacity. It feels like blowing off two of these new seemingly debilitating results as anxiety seems wrong. Any fast acting anxiety medications (low dose) stopped working. You can delete this if you feel I had enough help. Thank you.

No need for apologies, I meant several doctors’ opinions, not opinions on this forum. :slight_smile: Have you worked with a therapist on relaxation techniques, mindfulness, or breathing exercises? That might be helpful. Then you can see if you have a reduction in symptoms. I hope our members will have additional input for you, Nichole.

Hi, Nichole, how are you? Any news?

Thanks for asking! I really should see a psychologist or heck even a psychiatrist, but they all seem to have horrible reviews in my immediate area. It really is crippling me! I do try to meditate and read books about Cognitive behavioral therapy and do breathing exercises, but with so much shortness of breath and lightheadedness it's hard not to revert back to anxious thoughts. I have had multiple EKGs, about to get off of a 30 day holter and a couple echos in the past year. Always have an elevated C-reactive protein of ~15 mg/L and a slightly elevated proBNP of 250 or so. Two doctors say it's not related to my heart, I guess I should just accept it. Thank you again for your concern :)

What do you like to do for fun? do you get outdoors much? I find the woods really helpful.

I think you may want to read my posts. I have diastolic dysfunction also. They tried to chock mine up to anxiety and it does flare with stress BUT it is not all related to stress. I cannot walk too fast or I get dizzy and all. I convinced my doctor when I went on lisinopril and felt better in a three day span. I know you are stressed I was there too. All I can say is if you are not hearing what you feel comfortable with get a second opinion. I am NOT trying to scare you but I have a heart failure diagnosis and do not have anything show up on halters even if I feel like crap. But, I do have a fantastic, trustworthy doctor.

Have they done a heart failure blood test or is that the c reactive test?

The ProBNP is the heart failure and the c reactive is the overall "inflammation" and sometimes I've read also stiffening of the arteries etc. Actually a normal c reactive is < 1 and im 15 :( I have had these results for 2 years.

I actually remember reading your story about them taping the device to your back for the "allergy" test. I saw you also got it (the DD) after your ASD closure. I related so much to the not being able to do laundry etc, but I haven't even had my ASD fixed. Did they give you a stage of your DD?

I didn't expect miracle results to come from my holter, but I was hoping to see if they would catch Afib, since they weren't sure if it was SVT or Afib when I had the two attacks, and heart rates of over 200 for an hour and for whatever reason takes me months to recover from. I had two runs of about 12 beats that felt like a short SVT, hoping they will be able to tell me from that. Whether it be anxiety or something more sinister, it really sucks. I also do not have any right heart issues, only left.

I just don't get how I see everyone getting them fixed and its suggested when it's found, but not for me when I feel like something is really wrong. I found an Adult congenital heart disease doctor in my area and I think I will consult her and take her advice and *try* to stop worrying if she has the same opinion.

@dancermom I am also a huge fan of the outdoors. Originally from Pennsylvania and moving to Texas about 6 years ago has been interesting to say the least. It's hot here lol :)

My heart failure is at stage one, however, stage 2 is having symptoms and I definitely do at times. My C reactive was not high. Does your doctor even do closures? The doctor that closed mine had only done 300 and said that was actually a lot. They have only done them on adults for less than ten years. My symptoms are similar where I can overdo then have symptoms for a few weeks or month. Mine is left ventricle stiffening with diastolic dysfunction, stress test with breathing gear was fine. Doctor told me too walk to work out only if it feels ok otherwise back off. I have a new puppy so I am doing it and I know my limits. My doctor said it was not my heart too even tried to talk me into getting a new doctor until he did a double heart cath. Then, he pulled in four more cardiologists even asked me if I had radiation to my heart. I luckily had not even though I had breast cancer. None of my holsters come up with anything. Is your hole in a spot they cannot get to my sister has a PFO they can't close.

My current doctor has authored a publication in which they have closed 3 ASDs by device in one patient and his listed expertise include Medical Device Development and Management of Atrial Septal Defect (ASD) and Patent Foramen Ovale (PFO). Not quite sure of his numbers. The adult CHD I found has done about 500, 40 on those on adults and that was of 2012. She has also authored publications about Adult CHD. My current doctor said that he fixes about 50% of ASD defects he finds for repair. He also said that he promises if I get it fixed, I will not feel better because he doesn't think any of this is heart related.

My symptoms are weird in that I don't get out of breath unless pushing myself, but I feel like I am suffocating. As if though I held my breath and then tried to breath and got nothing. It's hard to explain to anyone, and this is something I experience a LOT of the time (while resting, when I talk maybe too much etc.). When I do push myself I get more lightheaded than out of breath.

It's so nice to talk to people that understand. I appreciate the replies.