Feeling a whirlwind of emotions—sadness, confusion, bewilderment, …, etc. after my recent “Bubble echo” test, which uncovered a hole in my heart.

[Eva]

Hello all,
Feeling a whirlwind of emotions—sadness, confusion, bewilderment, …, etc. after my recent “Bubble echo” test, which uncovered a hole in my heart.

Despite the turmoil of feelings, I am coming to terms with this unexpected discovery and learning to accept what lies beyond my control.

Over the past two years, my night-time oxygen levels have been on a decline. My pulmonologist recommended an oxygen concentrator, which I’ve integrated with my CPAP machine. Yet, even with this intervention, my daytime oxygen saturation continues to occasionally dips to 85-92% while I’m at rest. Pursuing further investigation, my cardiologist ordered a “Bubble echo study”. The results indicated:

“A positive bubble study with mild shunting at rest and with Valsalva maneuver, manifesting after 2-3 heartbeats. This suggests a possible Patent Foramen Ovale (PFO), although concurrent pulmonary shunting cannot be ruled out. The severity of bubble shunting is graded as 1, with minimal opacity (less than 20 bubbles).”

No necessary interventions at this time and I hope none in the future either.
My cardiologist encourages me to continue my physical activity, while online sources suggest sticking to ‘less than moderate’ exercise. Any thoughts or recommendations?
Being on warfarin is helpful for the protection it provides against the potential stroke risks associated with my PFO.

I sincerely hope this condition is rare, but if anyone else has it or has any insights, your input would be appreciated. Thanks, Eva

 

[Deidra]

Sorry to hear about the oxygen level issues, that sounds worrying.

Here's some reassuring data about PFOs, which are very common. They found a small PFO on the transesophageal echo they did during my recent surgery

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3723385/

The frequency of a PFO in the population has been reported at 15% to 35% in autopsy studies​

It therefore appears that antithrombotic treatment reduces the risk of recurrent events in stroke patients with a PFO to the level of stroke patients without it.​

​

Based on what I can find online, grade 1 is the lowest severity of shunting. I struggle to imagine this would be enough to cause a decrease in oxygen levels on its own, but I'm not a doctor so really I can't say.

My cardiologist encourages me to continue my physical activity, while online sources suggest sticking to ‘less than moderate’ exercise. Any thoughts or recommendations?

Mechanical prosthetic valves and PFOs don't in and of themselves confer any exercise limitations. If your cardiologist says to continue exercise, I would follow their advice.

 

[3mm]

cardiologist encourages me to continue my physical activity, while online sources suggest sticking to ‘less than moderate’ exercise. Any thoughts or recommendations?

I agree with Deidra that you should follow your cardiologist's advice to continue physical activity. If you are uncertain about what to do or how much to do, perhaps your Dr can prescribe some physical therapy where they will help you set up an appropriate exercise routine. Good luck!

 

[Eva]

I agree with Deidra that you should follow your cardiologist's advice to continue physical activity. If you are uncertain about what to do or how much to do, perhaps your Dr can prescribe some physical therapy where they will help you set up an appropriate exercise routine. Good luck!

I asked him and his advice was to stop when I reach point too tired and cannot continue, which I’ll do as I’m enjoying these strengthening exercises!
Stay well.

 

[Eva]

Sorry to hear about the oxygen level issues, that sounds worrying.
…

​

I struggle to imagine this would be enough to cause a decrease in oxygen levels on its own, but I'm not a doctor so really I can't say.


Mechanical prosthetic valves and PFOs don't in and of themselves confer any exercise limitations. If your cardiologist says to continue exercise, I would follow their advice.

Yes, I’m following his advice. Thank you. I fully trust him and trust his genuine care.
Until today, I cannot see his “clinical notes” to better understand everything he said as I may have misheard or couldn’t remember all he said due to the shock of hearing I have a hole though he assured me not to worry about it.
“although concurrent pulmonary shunting cannot be ruled out”! I’m seeing pulmonologist next week and will verify what this means!
Stay well.

 

[Woodcutter]

When I was in my 40's (and at least 5 years away from my mechanical mitral valve) I developed atrial fibrillation that ultimately was addressed with an ablation. What was explained to me at that time was that everyone has this "hole in the heart" during neonatal development. This stems from the development of the heart chambers as they fold at a time when the heart is not used for obtaining oxygen. So when we are all born there is this hole, or an area with a skinny flap, between the atria. In something like 75% of us, the hole closes in infancy. For some it never closes and occasionally it can be a problem . . . but for most it is never an issue.

Why this came up, is that at that time, while some ablation techniques were still being developed, it was explained to me that they actually target this hole or thin wall area for the catheter penetration to move from the left to the right atrium for the targeted pulmonary veins isolation (a very common problem location for AFIB).

 

[pellicle]

Hey Eva

well that 'came out of nowhere' didn't it!

No necessary interventions at this time and I hope none in the future either.
My cardiologist encourages me to continue my physical activity, while online sources suggest sticking to ‘less than moderate’ exercise. Any thoughts or recommendations?

I have none, but I'm glad to know that it was discovered, is being examined and you're already on the drug that would be prescribed to mitigate against strokes.

I wish there was more I could do than listen; but listen I (and we) can.

Best Wishes

 

[pellicle]

while some ablation techniques were still being developed, it was explained to me that they actually target this hole or thin wall area for the catheter penetration to move from the left to the right atrium for the targeted pulmonary veins isolation (a very common problem location for AFIB).

wow ... that's really interesting.

 

[Eva]

Hey Eva

well that 'came out of nowhere' didn't it!


I have none, but I'm glad to know that it was discovered, is being examined and you're already on the drug that would be prescribed to mitigate against strokes.

I wish there was more I could do than listen; but listen I (and we) can.

Best Wishes

Yes, Pellicle. This came as a shocking surprise and I’m delving into the potential causes! I’m also sharing my experience in the hope to find common ground with others who have a similar condition.

 

[pellicle]

I’m also sharing my experience in the hope to find common ground with others who have a similar condition

And in future times someone may read this journey and take solace from it.

Best wishes

 

[V__]

if anyone else has it or has any insights, your input would be appreciated.

Not much of insight, but I do have either this or a similar condition. It was found a the end of MVr surgery. It's fairly small, about 3-4 mm. At that time I was told that:

• This should not cause any issues.
• It's very unlikely to grow. But if it does, there is a transcatheter method they could use to plug it.

So basically at the next echo scheduled (in ~1.5 years from now) my cardiologist also plans to use the test version "with bubbles".

I cannot quite translate your test result into the hole size, except that "it looks small". Would agree with @Deidra that by itself the hole may not explain the low oxygen issue. I wonder if something else is going on. Did your cardiologist say they understand the reason for the low oxygen?

 

[Gail in Ca]

I’m sorry you are going through this.
I don’t have any experience in this, but it brought to mind my childhood friend who, at 13, had open heart surgery to repair a hole in her heart. It was in 1967 and Dr Shumway did her surgery at Stanford.
I remember visiting her and she had walked all over the hospital after her surgery. It was as if she hadn’t had OHS!
I had to have OHS at 34, but I’d lost touch with her. I saw her years later in the grocery store and we caught up. She was married to a wealthy guy, she had become a doctor of research and she had 2 children, the youngest asking me if I had a college degree! Ha ha. What fun memories!!

 

[Chuck C]

Very sorry to hear about what you're going through Eva.

The good news is that it was discovered so that it can be monitored. It appears to be common with treatment options, should that become necessary. I believe my uncle had this condition.

No necessary interventions at this time and I hope none in the future either.

This is good. Sincerely hoping that none are required in the future.

Hang in there.

 

[ottagal]

Oh Eva, I am so sorry that you have this worry on your plate about the new finding. I know how worrying this all can be. I am sending you hugs and prayers.

I don't have any good information medically to share other than my cousin had a PFO and they went through the groin to "patch it". It was a day surgery. However, this may not be needed in your case. He was also told that it is quite common. I don't have a PFO, but a new finding for me (that they are supposed to ligate on my upcoming redo OHS AV and new PV replacement) was a PDA. And no it does not stand for "public display of affection"! LOL. It is a patent ductus arteriosus. I can assure you that when first discovered recently they thought it was quite large, but after another echo, I was told it was quite small. All to say, the surgeon will ligate it because I will already be opened up, but I think they would have left it as is if I wasn't having a re-do OHS.
Feel free to reach out if you need support. Thinking of you and wishing you the very best news and outcome.

 

[Buck83]

Hello,
I had an AVR (On-X) and aortic graft 2 years ago last Sunday! 8 months later ai had a stroke due to a clot forming on the valve and kicking off and going to my brain. Luckily, no lasting detriments. While in the hospital recovering from my stroke they did a bubble study and, to add to the list, they found a PFO! Even with my history, the cardiologist advises to leave it alone since I’m already on Warfarin indefinitely! I have not dialed back my physical activity at all and don’t plan on it. The more I do the better I feel. Living a diminished lifestyle is not living! Not sure this is helpful to you but wanted to share!

 

[dornole]

Why this came up, is that at that time, while some ablation techniques were still being developed, it was explained to me that they actually target this hole or thin wall area for the catheter penetration to move from the left to the right atrium for the targeted pulmonary veins isolation (a very common problem location for AFIB).

Yup they did this when I had mitral valvuloplasty. Went right thru the septum between the atria in order to access the mitral valve.

 

[Chuck C]

Hello,
I had an AVR (On-X) and aortic graft 2 years ago last Sunday! 8 months later ai had a stroke due to a clot forming on the valve and kicking off and going to my brain. Luckily, no lasting detriments. While in the hospital recovering from my stroke they did a bubble study and, to add to the list, they found a PFO! Even with my history, the cardiologist advises to leave it alone since I’m already on Warfarin indefinitely! I have not dialed back my physical activity at all and don’t plan on it. The more I do the better I feel. Living a diminished lifestyle is not living! Not sure this is helpful to you but wanted to share!

Hi Buck.

8 months later ai had a stroke due to a clot forming on the valve and kicking off and going to my brain

Very sorry to hear this. Thank you for sharing. Was this on the lower INR protocal for the On-x of 1.5-2.0?

I'm very glad to hear that there were no lasting detriments from your stroke. Wishing for you that that was your first and last one.

 

[pellicle]

Hey Buck

I had an AVR (On-X) and aortic graft 2 years ago last Sunday! 8 months later ai had a stroke due to a clot forming on the valve and kicking off and going to my brain

That's terrible.

Has anyone suggested if the PFO played a role?

Best Wishes

 

[Buck83]

Hi Buck.


Very sorry to hear this. Thank you for sharing. Was this on the lower INR protocal for the On-x of 1.5-2.0?

I'm very glad to hear that there were no lasting detriments from your stroke. Wishing for you that that was your first and last one.

Yes. The stroke occurred on the recommended 1.5-2.0 INR. I am now settled into 2.5-3.5 and typically hang around 3.0 and plan to stay there!

 

[Buck83]

Hey Buck



That's terrible.

Has anyone suggested if the PFO played a role?

Best Wishes

The stroke was most likely caused by a clot from the valve due to low INR. The PFO may have provided an avenue for the clot to pass through. It blew my mind that I went through such an extensive heart surgery and mounds of testing prior and they never did a bubble test to see the PFO until after the stroke! My experience with everything has been mostly positive but there have been a couple things I haven’t liked. The stroke brought most of them to light. I was also tested for clotting disorders after the stroke. Feel like that’s something that should be looked at prior to agreeing to any mechanical valve and indefinite warfarin!