Doctor Now Suspects My Heart Has a Ventricle Septal Defect

[Papman454]

I had been working for many years to determine why I'm still groggy and tired, even after UPPP surgery in 2010 and my AHI now being under 2. I had given up and was just going to live with it, until I was in a car accident that was my fault - due to slowed reactions in traffic.

After that accident, I thought to try adding oxygen during the day, as I already use it at night with my auto bi-pap and adding oxygen during the day made a significant improvement. So I've been giving it a new try with a pulmonologist that specializes in sleep disorders. I had gone to my PCP and showed him my pulse oximeter that was at 86-87 and his meter agreed with mine. He had me walk around the building and my O2 rose to the low 90's.

When I went to the pulmonologist, I was unable to recreate the low readings in her office. This was frustrating and I was reminded that her meter is of "medical grade" and mine wasn't (a wrist worn CMS-50F) and she ordered a Pulmonary Function Test, which didn't show any abnormalities. I was so sure that the PFT would show something and I was paying out of pocket for it and was willing to start spending for tests that haven't proven fruitful for many years, that I didn't respond well when next told it may be a hole(s)between the ventricle cavities of the heart. At that point, instead the doctor gave me some Asthma inhalers (brand name Arnuity Ellipta) and told me to take the inhaler once a day and try to go without supplemental oxygen as long as possible. Although the inhaler gave me some additional energy, I quickly realized how foggy I become without the supplemental oxygen during the day and gave up on the inhalers and went back to the extra O2. I don't seem to meet any of the criteria for Asthma.

I bought the same brand of medical grade finger-tip oximeter that the doctor had (Henry Schein) but now can't get low readings, but the difference between having extra 02 and not is stark. When I apply the oxygen, I see the numbers go up by 5-6 points after a few breathes, but starting from 90-91. This doc is of the school that anything of 88 or higher is sufficient, though the Mayo Clinic recommends 90 and above.

All I know is that there is good improvement when O2 is added, just as there was when it was prescribed to be added to my CPAP. I also usually wake up once a night and asked about a sleep aid like Ambien, but the doc said its best not to complicate the situation with a Med but did recommend a supplement, L-Thianine if spelling that correct. If I wake up twice, its devastating to the next day, but usually its once a night, about 3 am and back to sleep in 30 minutes or so. So when I go for the next office visit, the next recommendation will be for the Echocardiogram to test my heart. That would likely have been the next step at the last meeting if I hadn't reacted poorly to the news and more expensive tests out of pocket and so went the route of the Asthma inhaler first. At a practical level, its probably simpler to correct a heart issue than a lung issue, but doesn't sound so great initially.

Does it seem I'm going in the right direction? I've kissed so many medical frogs along the way, then over to alternative medicine people, and now back to traditional medicine. Maybe I'm missing something right in front of my eyes. The good side of the car accident was it got me to add O2 during the day, and it helped, though I haven't been able to support that with ox-sats below 88. The doc also mentioned that I may just be more sensitive to oxygen levels than other people. There may be something hiding in plain sight, just as the oxygen hose I use at night was added so easily during the day.

I've been reading here again and again that just because one has a low AHI doesn't mean you automatically get to enjoy it.

[Julie]

Hi, I feel like a call centre person saying this, but I feel your frustration! However, I also wonder when you last had tests looking for other problems that might not be cardiac or OSA related, things like thyroid, sugar, hormones, even depression, etc. You are ascribing your problem to 02, but what if it isn't, or if that one incident was a random, one time event and that you could be beating the wrong horse. Plus we are all just getting older. and ventricular SD's tend to be irregularities that would have already been noted by now.

[SDBud]

Does it seem I'm going in the right direction? I've kissed so many medical frogs along the way, then over to alternative medicine people, and now back to traditional medicine. Maybe I'm missing something right in front of my eyes.

It IS really odd that your PFT was OK, but oxygen helps you.

I'd get the Echo, and if THAT is normal, ask them to check your neck veins and arteries for plaque,
maybe it's low blood flow to your brain and NOT other parts of your body where the problem lies.

[Rexlan]

While you're at it get a new pulmonologist who has a clue how an oximeter works. Unless she has reinvented light she isn't medical grade.
Your CMS-50F is as accurate as any of them and with the recording feature you can overlay that on the CPAP charts.