Cardiology appt: what will they do and what will it cost?

[PeterPan]

Ok, so I'm spinning off my own thread here, lol. I *think* the issues with shortness of breath I've been having with exercise are from vocal cord dysfunction. However as part of eliminating explanations, I have a cardiology appt in a month. I have a very high deductible ($10k) so I'm paying for this. What tests is a cardiologist likely to want to run in a situation like this? If I can know the names, I can contact the billing and ask upfront what they'll cost. I think I could justify spending up to $1k on this, but if it goes much higher (into the $3-5k range) I'm going to have to be really careful. 

Fwiw, I'm 42, considered to have "good" cardiovascular fitness per the step test I just did that calculates VO2 max (I have no clue what I'm talking about), and I work out vigorously 4 days a week. No family history of unusual heart problems. 

Also, are there multiple paths here, sort of the gold and the budget? Like if the doctor lists three really great tests and they're expensive, are there some options that would be cheaper but adequate or a middle of the road screening option?

Edited April 22, 2019 by PeterPan

[HSmomof2]

I had a stress echocardiogram and Holter monitor when I was having unexplained chest pain. 

[eagleynne]

The most likely test they'd order is a cardiac stress test. But, honestly, assuming you aren't having chest pain or tightness, and that your shortness of breath only occurs with exertion, and is predictable in that you know it's going to happen when you exercise they may just do a 12-lead ECG to look for a dysrhythmia. If I were your PCP I'd want you to see a pulmonologist (exercise induced asthma) followed by an ENT (vocal cord malfunction). It doesn't sound like a heart problem.

[PeterPan]

1 hour ago, eagleynne said:

The most likely test they'd order is a cardiac stress test. But, honestly, assuming you aren't having chest pain or tightness, and that your shortness of breath only occurs with exertion, and is predictable in that you know it's going to happen when you exercise they may just do a 12-lead ECG to look for a dysrhythmia. If I were your PCP I'd want you to see a pulmonologist (exercise induced asthma) followed by an ENT (vocal cord malfunction). It doesn't sound like a heart problem.

Thanks! I'm significantly under-responsive for sensory. I don't *think* I'm having chest pain, but I can't guarantee it.

Yes on the asthma, which is why I was thinking the VCD was a reasonable explanation. It's well-controlled with turmeric and anti-histamines at this point. I worked really hard with the meters (measuring at lots of points during the day, before/after exercise, etc.) that I can now feel accurately within a 10% drop in peak flow. Did a step test at home using my peak flow meter and pulse oximeter and my peak flow went UP (540 to 570) and my oxygen went up (98% to 99%). 

If the VCD breathing exercises are WORKING, which they clearly are, then is it possible I'm also masking for a heart problem? Is it also controlling my heart rate and and helping control a heart problem? Would the chest pain be significant enough that even I would feel it? Or if the VCD breathing techniques are working (which they are), then it's the VCD, boom done, stop worrying about it? Or you're not allowed to say that? LOL

And is there any hack way to use a pulse oximeter to check for dysrhythmia? And you're saying if it were some of the scarier things (excess fluid around the heart, whatever), I'd have symptoms beyond exertion? That would make sense. You can laugh, but occasionally I have a teeny tiny bit of shortness of breath occasionally when I talk. But I talk a lot and am sort of excitable, so it's like slow down honey, lol. And you're right usually there was some exertion, like we were trying to walk and talk or I just came up the stairs and am trying to talk. 

It didn't seem like there's a lot the ENT can do for me, besides diagnosing and then referring to SLP for exercises to relax the breathing. I'm not at all open to surgery, not when it's being controlled with the breathing. I found some research on inspiratory muscle strength training for exercise-induced vocal cord dysfunction and have the Powerbreathe device used in the study to begin that. I've done a few days of it now and it seems to be going well. It doesn't induce the stridor or panting, and it feels *good* if that makes sense. Like when I do it, breathing (inhaling) seems easier and everything seems more relaxed and calm and open. 

[J-rap]

I was thinking a pulmonologist too, given your history of asthma and pneumonia.  (Or a pulmonary-cardiologist, like a relative of mine, although I don't think those are too common.)  If you go somewhere where the doctors have more of a team approach, then whether you start out with a cardiologist or a pulmonologist, they'd hopefully consult with the other if they felt it was veering more into the other's territory, and decide on the best tests together.  

In any event, a pulmonologist might want to do some sort of a lung x-ray as well.  

Those tests do add up quickly though!  It's a good idea to kind of lay out a plan (with the doctor) ahead of time so you're not too surprised by the cost.

I hope you get to the bottom of it soon!

[PeterPan]

2 minutes ago, J-rap said:

pulmonary-cardiologist

Interesting, you're right that would merge the two! 

I had a pulmonologist, and he was so disinterested in me, considered everything mild, wanted to hand me drugs and walk away. I was having repeated pneumonia and bronchitis, even with the drugs, so I gave up on him. Really though, I don't think this is the asthma. I'm good at feeling that now and use my monitors like a crazy woman, and I don't think it's the asthma. My out is ok. It's the in I can't get. And the croupy lung feeling from asthma is during the out, while the stridor is on the in. 

2 hours ago, eagleynne said:

assuming you aren't having chest pain or tightness

So I'm thinking about this some more. It seems like I should feel a *difference* in whatever before and during exertion, right? Like right now as I sit here I can feel a presence on the left side and some pain. I think the pain is my rib cage (intercostal?) muscles from using the Powerbreathe this weekend, and if I touch those muscles they're tender. I don't know why I'm sensing it more on the left than the right, considering they both hurt when I touch them. But it seems to me if it's my HEART I should create a baseline and then monitor for change. I don't *think* I've been having a change there, but I can try to notice. 

The other thing I can do is try to spend some time each day trying to feel my heart. I think I might be able to do this by lying down. Or maybe I should do some exertion (to get my heart rate up) and then lie down? Oh that would be smart. It's just very hard to isolate and feel the HEART. I can't use tapping or create sensations easily the way I did with other things. I can see what Kelly Mahler put in her interoception materials. 

I'm a little crazy to work with, eh? LOL 

[Valley Girl]

I totally understand wanting to know what it will cost. Unfortunately, there is not a simple answer to that question. You may already do these things, but here is what I do whenever possible:

1. Is the doctor in-network? What is your co-pay to see a specialist?

2. When you make the appointment, I'd ask what tests the doctor is likely to perform during the appointment. Then I'd check my insurance benefits to see what my deductible/co-insurance will be for those tests. (With ours, some tests are covered in full while the deductible and co-insurance apply for others.) Get procedure codes and call your insurance company if you're unsure.

3. For additional tests after the appointment, again, I'd get procedure codes and call the insurance company to make sure it's covered or if pre-approval is needed or anything. Depending on what's ordered, I'd find out if it's more cost-effective to go to one specific type of in-network facility vs. another. (For instance, having an MRI done at a free-standing facility as opposed to the hospital.)

4. For labs, make sure the samples are going to an in-network facility. (Don't just take the office staff's word for it. Check with your insurance. I almost got burned once to the tune of thousands of dollars because the office sent samples to an in-network lab they'd always used. However, it had recently stopped being in-network, and they didn't know.)

5. Make sure the radiologist or other providers involved are also in-network, even if you're going to an in-network facility. Find out how the insurance company handles that. I've had times where I'd be responsible for anything an out-of-network provider billed and an instance where the insurance had some special provision and I didn't have to pay it. I just don't assume anything anymore.

I'm sure other posters will have additional or better ideas. Hope the problem turns out to be minor.

 

[Cdan]

I am a longtime lurker, but I feel compelled to share my experience. I read some of your other thread about problems breathing.  I had similar symptoms and was finally diagnosed with idiopathic subglottic stenosis. Scar tissue grew in my trachea so that the opening became the width of a straw. I had dilations every six months for two years. Then I had a tracheal resection. Two years later I’m still breathing easily. 

It was hard to get a diagnosis.  A speech pathologist heard me breath and immediately recognized it.  She did a scope in the office and saw the tissue  

When I read your other thread, I didn’t see this mentioned as a possible cause. My resection surgeon was a pulmonologist. 

[Amy in NH]

Are you taking any vitamins or supplements?

[PeterPan]

3 hours ago, CDan said:

I am a longtime lurker, but I feel compelled to share my experience. I read some of your other thread about problems breathing.  I had similar symptoms and was finally diagnosed with idiopathic subglottic stenosis. Scar tissue grew in my trachea so that the opening became the width of a straw. I had dilations every six months for two years. Then I had a tracheal resection. Two years later I’m still breathing easily. 

It was hard to get a diagnosis.  A speech pathologist heard me breath and immediately recognized it.  She did a scope in the office and saw the tissue  

When I read your other thread, I didn’t see this mentioned as a possible cause. My resection surgeon was a pulmonologist. 

This is interesting, and thanks for posting! That was actually something I thought about doing, going to an SLP who specializes in VCD and breathing issues. I found one listed, because we're outside a major city with lots of options. It hadn't occurred to me they would have some diagnostic tools like that. I was thinking they also might jump start whatever could help me. I had kind of poo-pooed it because frankly I've been to like 80k (not really, but feels like it) SLPs, OTs, psychs, music therapists, on and on with my ds. But you're right, it might be a really smart way to get information.

What caused your subglottic stenosis? Or does idiopathic mean they don't know? LOL There was no injury or anything? 

Anyways, thank you for sharing and coming out of lurking. 

[PeterPan]

1 hour ago, Amy in NH said:

Are you taking any vitamins or supplements?

Uh yup. Are you think something is causing it? Honestly, I think this is long-standing. It's at least 2-3 years. There's the question of whether it's worse now, but the more likely explanation is that I'm working out harder now. Like before, I would run a mile in 4 lap segments, like run, take a break, run. Now I'm SPRINTING 3/4 of a mile in HIIT like sprint a lap, walk 1/4 lap. I did boxing before, but I had to take a lot of breaks with that. A friend who is a nurse actually came over and took my pulse because she was worried about me. I just had to take a lot of breaks. Now I'm lifting for 60-75 minutes, which is more intense. 

So the supplement basics are the same across those years. I just can't fathom they'd be causing it. Most are pretty basic, like calcium, magnesium, flax oil, that kind of thing. No weird herbs or any mixture products. I had a nutritionist do me plans years ago and I pretty much take what she told me, with minor additions.

Edited April 22, 2019 by PeterPan

[Amy in NH]

It's certainly possible.  I developed severe shortness of breath from an over the counter supplement. 

[Cdan]

1 hour ago, PeterPan said:

What caused your subglottic stenosis? Or does idiopathic mean they don't know? LOL There was no injury or anything? 

 

The cause is entirely unknown.  No injury, no previous surgeries.  It affects a small group of women, mainly women. Vanderbilt finished collecting data on a study recently trying to determine the cause. I don’t know if findings have been completed or made public yet. 

I hope you get answers soon. 

[PeterPan]

2 hours ago, Amy in NH said:

It's certainly possible.  I developed severe shortness of breath from an over the counter supplement. 

Interesting! Can you tell me what it was? That would give me a headstart. I'm trying to think here. The only really weird things are kelp and red marine algae, and for real I've been on the kelp for 15+ years. And it's only occurring with exertion, not all the time. Ok, so I'm googling this and it's saying it's more like an anaphylactic reaction or allergic reaction when you're having shortness of breath with a supplement. Yeah, I had that years ago with cantelope when I was very reactive, sigh. 

[PeterPan]

2 hours ago, CDan said:

I hope you get answers soon. 

I think I'm going to bite on your SLP idea. I just have to research it some more and pick someone and find out the wait (and cost, lol). 

Hopefully it's the VCD. It's the simplest explanation at this point. And I spent some time tonight during my workout really trying to feel my heart. I don't think I'm having heart pain. I'm doing SO much better in my workouts now that I have the VCD breathing. My recovery between sets is 1/3 the amount of time, my efficiency is 10% improved, and I'm leaving more relaxed and calm. I'm also not tired the next day like I had been. This is my 4th workout now with the better breathing, and it's really astonishing. The guy who makes my plans was there and very pleased, and he confirmed that he had heard the stridor too after I explained what it was. So I'm not crazy thinking I had been having it because other people were hearing it and just weren't sure what they were hearing.

So I think if I can get into an SLP and refine what I'm doing, see what's tight, etc., it could be good. It was really messing with my head, making me worry about the idea that it was my heart. I don't know if the SLP will want the cardiologist anyway, so I'm not canceling it yet, just pursuing the SLP too.

Edited April 23, 2019 by PeterPan

[Amy in NH]

It was GABA.  It was really bad.  I did some research which pointed to GABA, and the symptoms stopped when I went off of it. 

[PeterPan]

16 minutes ago, Amy in NH said:

It was GABA.  It was really bad.  I did some research which pointed to GABA, and the symptoms stopped when I went off of it. 

I'm not even astonished. Like I haven't heard shortness of breath from it, but it was so strong for someone I know who took it that it BLOWS MY MIND that alternative docs will recommend it so blithely. 

[PeterPan]

3 hours ago, HeighHo said:

 PP, you really shouldn't be needing so many breaks.  Are you fatigued afterward also?

Ok, I'm laughing here. Did you see my other thread on being out of breath? https://forums.welltrainedmind.com/topic/686332-out-of-breath-with-exercise-asthma-something-else/  Yes, you did because you're the reason I got b12 testing!  Well I'm waiting for the results, tick tock. 

But yeah, that's why I didn't buy it was something simple like saying I'm fat or out of shape. I'm working out enough that I should not sound like that. At least what I'm doing now with the VCD breathing is WORKING.

Doing the VCD breathing, I was able to do the 2 miles with one brief break. I wouldn't have *had* to take that, but I did just as a point of caution. When I finished I was not panting but was on the edge. So the VCD breathing controlled it. Also that's with a b12 tablet in my system (I went ahead and started). I also started the PowerBreathe device, which strengthens inspiratory muscles and has some evidence for improving exercise-induced vocal cord dysfunction.

So I'm going to get a bunch of variables at this point and make it hard to sort out, lol. The MIX seems to be working, as my recovery is better, fatigue better, and breathing status overall better. My oxygen and peak flow were always fine. So basically the question has just been what I'm fixing if it's working and whether I'm missing something dreadful.

I spent a lot of time yesterday at the gym trying to feel my heart between sets. I really don't think I'm having pain. That's a good sign. And although we know I have interoception issues, I'm just saying I don't *think* I'm having heart pain.

I'm really weepy with the b12. I'm concerned either I don't need it or the dose is too high or I'm destabilizing something else. Tick tock on the labs so I can actually have data, mercy.

The PowerBreathe device is interesting. It makes my lungs feel very open, like I can really get a breath, and I like it. I'm now up to level 2 on the medium resistance device. I'm going at it in 3X40. They recommend 2X30 (a set of 30 twice a day), but I'm like hey, let's just go for this, lol. So far so good. It doesn't seem to exaccerabate anything or make anything worse. I'm a *little* sort of woozy/funky/lightheaded, but only a little. It passes in like 2 seconds and I don't have to sit down or alter activity. The first day or so I did, but not after that. And that has kind of surprised me, because I thought the PowerBreathe might somehow make it worse.