Wheezing post ASD closure

Hello all! I am just bringing to your attention a post from one of our newer members @Urmila, who has been suffering from wheezing after having her ASD closure completed in January. She has also dealt with some weight gain following the procedure, and would love to get your insights on this!

-Arjuna

I had mine in March of 2019. Right after closure, I was breathing better and able to get of Oxygen during the day. In September I was put back on oxygen 24/7 as my breathing went down. Pulmonary can’t figure it out. Cardiologist swears it is not a heart issue anymore.

Sorry I am no help. I had only 1 device put in, but the hospital said my PFO was the largest they had seen. Every bubble made it to my brain. My flap didn’t even try to seal as a child. Doctors do not know how I made it to 46 years old before it was found.

So sorry to hear that the breathing became a challenge last September @Bistlinelv , you’d think your troubles would go away after the closure. It must be frustrating that the pulmonary specialist can’t figure it out either- being left in the dark like this is no fun. Have there been any new developments since then?

-Arjuna

No new developments. I just deteriorate every week. Insurance finally gave approval to go back to UCLA. UCLA is who found And fixed the PFO in March 2019. Closing it gave me 6 months of breathing… just wish they can figure out what other birth defect or problem there is and fix it. I am 47 years old with no quality of life AGAIN.

All my symptoms indicate heart failure, but the heart seems to appear healthy. But I heard that for 3 years of chest pain and heart failure symptoms before the PFO was found. Vegas doctors suck. They don’t want to heal… only get their 6 week follow up income.

Sorry… I am negative today. I try to stay positive and hopeful but pain management just told me it is time to go back to surgeon’s office for my 3rd neck fusion and 1st lower back fusion.

I can hear the frustration in your “voice”, Bistinelv. One of the great things about a community like this is that when you are feeling negative, there are others here who listen and “get it”. That doesn’t mean you’re negative all the time!

We’re glad you’re here, so vent away. Someone will hear you and “get it”, and who knows, maybe they will write a few encouraging words. You’d do the same for them, wouldn’t you?

Take care and let us know how you’re doing.

Seenie from Modsupport (part of the Modsupport team)

PS Lower back fusion? I had one of those (L4/5) in February, and I was dreading it. Six months later, I have quality of life I thought was gone forever. It’s amazing. Neck and back pain can’t be helping your heart symptoms, either. Maybe when they do a work up for the surgery they will get to the bottom of the heart thing. Hope!

Thank you. I do try and encourage and at least let others on here know we are not alone. This morning was just a bad morning. I have been putting off the lower back surgery since 2012… but getting rear ended in Oct last year has made it the only option left.

I get what you were saying about surgery giving quality of life back. Both my neck fusions took lots of pain away. The third one will be a result of the second car accident. It loosened the hardware in my neck and blew the disc above. I was just dreading the recovery time in braces again.

Rear ended? Well that is awful. Those collisions can do so much damage. Ironic that the person whose fault it is, is usually OK. Grrrrr, that makes it worse, doesn’t it?

You’re right, you are SO not alone here! It was nice hearing back. I hope today’s a bit better than the other day was.

Hang in there, and hang out here!

S

Hi, I had this too. Went through 4 doctors until the ear nose and throat doctor realized I had an aspirin sensitivity that was causing lung issues as well as reflux. I stopped taking the baby aspirin and all returned to normal. Hope you found a solution.

Hi Sue! Interesting post. You may have noticed that we have a new look, but everything still works the same as it did, it just looks different. If there’s anything you’r’e wondering about, click on “new user help” near the top and scroll down. If you have any questions, don’t hesitate to ask! Click on “About/Contact” and then on the image

Seenie

Yes, I have had wheezing symptoms since before my surgery (2015). My breathing definitely improved and I can exercise and do normal activities but when I go to sleep and wake up I have to use my inhaler first thing in the AM. It doesn’t cause me to wake up in the middle of the night. Iv struggled for years with this and still can’t figure out the root to this.

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Thank you for your response @tps21491. Have you talked to your doctors about this? I am glad that your breathing has improved though, but I am sure you’d love to get to the bottom of why you need the inhaler daily. What inhaler do you use, and do you also take it at night before you go to bed?

Take care,
Arjuna (Lead Intern)

My inhaler is Symbicort. I usually just take it first thing in the AM bc that is when I feel the wheezing symptoms. Iv tried to take it before bed to see if it would help but I still need it in the mornings. Yes, I have told many doctors about this and they all look at me like I’m crazy. I do my routine stress tests with my cardiologist and it always comes back normal. Cardiologist doesn’t seem to think it’s related to my heart. Im now at a cross roads of do I continue to see my regular doctors with this issue or do I go the naturopathic route. Iv been reliant on this inhaler (that is very expensive) for years and I’m starting to get concerned with long term effects from it. It’s just so frustrating when you continue to poor your money and energy into it with no sort of outcome.