Nope, not that either.

Just an update for anyone who happens to find this saga while searching for answers for their own health problems.

My pulmonologist told me my comprehensive breathing test showed some constriction on inhalation (or was it exhalation, honestly I forget) which was the opposite of what someone with asthma shows. Well, I knew that already, I don't have asthma. He theorized some prior infection that damaged my bronchial passage (even though I had no signs, ever, of an infection) and recommended I supplement with 1-3 Beta Glucan, a general immune system booster and something that helps with tissue healing. He'd seen remarkable improvement in other patients with this natural supplement.  Natural general immune boosting supplement?  Right up my alley. So I started taking Beta Glucan and crossed my fingers. 

note: if you'd like to try Beta Glucan, research brands, and make sure you get WGP (whole gluten protein) Beta Glucan. After much research, I settled on the Beta Force brand.

But I must admit the Beta Glucan didn't do the trick. Same heaviness in my chest. Same trouble breathing.

BUT there's a happy ending to this story, which I'll post in a separate post.

Because that's what we do...

So I saw the cardiologist for an ultrasound of my heart (aka echocardiogram) the other day.

The test itself was pretty interesting. Something quite primal about seeing your heart pumping. thump-thump...thump-thump. I even got to see it in color. Artificially generated color, true, but still cool.

I saw the cardiologist afterwards and I was anticipating a conversation about mitral valve repair. I've had a heart murmur forever and about 15 years ago a doctor told me I had mitral valve prolapse, a fairly common heart valve defect. That diagnosis is what resulted in me being allergic to almost every common antibiotic.

Some creative thinker came up with the theory that if you have mitral valve prolapse (or any heart valve defect for that matter) getting your teeth cleaned could dislodge bacteria which would travel through your bloodstream, settle in your defective valve, lead to endocarditis (an infection in your heart) and you could die. So for several years like a good girl, as recommended by the American Dental Association and the American Heart Association, I took antibiotics every time I went to the dentist. Had one allergic reaction after another until even my doctor agreed that for my health I should stop taking antibiotics to prevent a potential infection. God forbid I get an actual infection and not be able to treat it. Found out later that the whole endocarditis from dental work theory is just that, a theory. Even the American Heart Association now says the former policy was overly aggressive. Just another example of why I hate the medical industry.

Where was I? Oh yeah. Mitral valve repair. So I'm expecting them to find some regurgitation (which is just like it sounds, blood leaks backwards through the valve) and then try to talk me into heart valve repair surgery. So I get the echo. I wait and wait for the doc and we finally get blessed with his presence. Echo? "Heart function at rest completely normal." Totally and completely normal. What about my mitral valve prolapse? Any signs of regurgitation? Um, yeah, about that. No sign of mitral valve prolapse. You just have a noisy valve, that's it.

So after seeing the cardiologist I find out I'm healthier than I thought I was when I walked in, which is always a good thing, but all those years with those fucking antibiotics were now even more of a waste. Forget theoretical discussions about heart infections from getting your teeth cleaned, I don't even have a heart valve defect. Fuck me.

"And you're declining the stress test?" Well, yeah. Elevating my heart rate is one of the things that sets back my recovery, I'm not keen on doing that for no reason. So give me a good reason doc. "Because that's what we do when someone presents with your symptoms." Someone. Your standard issue fat, sedentary 45 yr old who smokes socially comes in complaining of chest pain and me...more physically fit than most 30 year olds, excellent diet, low blood pressure, low resting heart rate, quit smoking a million years ago...we both get the same test. That's just terrific. My husband and I pressed him again...what is he looking for in a stress test that lines up with my symptoms (delayed inflammatory reaction to talking, bad air, and yes elevated heart rate...but no symptoms at the time - which is why I keep overdoing it - they show up 12-24 hrs later). Is the stress test going to uncover something that doesn't show up until the next day? Um, no, but still, "it's what we do". Do I have symptoms of blocked arteries? No. Do I have signs of coronary artery disease? No. But still it's the test they do. Well, not to me, doc. I'll pass.

I see the pulmonologist for a follow up on Wednesday. I'm confident my answers lie there.

Full Pulmonary Function Test

I got to sit in a phone booth and breathe into a tube. Over. And over. And over again.

For the sake of information I did what I know is one of my triggers...I breathed hard. Really hard. Several times.

When you do a pulmonary function test they have you breathe out all your air as fast and as hard as you can, and then keep breathing for 6 seconds, then breathe in a full breath. They measure all sorts of things, volume in, volume out, expiration rate, inspiration rate (eureka!? no, not that kind of inspiration). I've been doing Buteyko breathing exercises for almost a year, working on not breathing lots of air and here I was sucking in and blowing out as much as I could. Definitely not in keeping with Buteyko!

Then they give you a drug that open up your breathing passages, albuterol in my case, and do the test again and compare the results. If the drugs help, you have asthma (well, maybe). Anyone who knows me knows it took a lot for me to suck in drugs for the sake of research!

They also did a test where they have you pant against resistance that can tell them if you have "air trapping" where you aren't getting your breath because you have stale air stuck in your lungs.

I found out from the tech at the time that I definitely don't have air trapping, so that's good. And the albuterol did help a bit with my "small airways", whatever the hell that means. And she saw an indication of vocal chord dysfunction, which is an interesting piece of information, will have to research that now.

Pulmonologist reviews the rests, and the results of the echocardiagram next Wednesday. Will get complete answers to things like what does improved function in small airways mean? and do I have vocal chord dysfunction (certainly talking is one of my major stressors)? Could I be getting close to some sort of answer? Should be interesting.

Got a LITTLE overenthusiastic!

After seeing the cardiologist and the pulmonologist I felt emotionally better if nothing else. Yes, the cardiologist freaked me out a bit with his focus on my wacky heart valve, but after Mike talked me down and made me realize my symptoms don't line up with heart failure, I decided that kicking it up a notch wasn't going to kill me. After all, the cardiologist wanted me to do a full on stress test, getting my heart rate up into the 130's, so clearly he wasn't afraid I was going to drop dead from a little cardiovascular exercise!

I was feeling the best I've felt in a long time a week ago Friday...couldn't help singing in the car even (funny how simply not being scared will make you feel better!), so I kicked it up last week. Wednesday was cardio day. For the last few weeks I've been doing LOW level cardio (keepin' the old heart rate under 100), but last Wednesday I let it hover 115-120 for about 15 minutes. My lungs did start to tighten up, but I concentrated on relaxing, not letting them be in charge, and they settled down. Felt good. Also let my heart rate drift to 120 when weight training. I kept it civilized, making sure I rested between sets, but allowed myself a little exertion. Felt great afterwards.

Thursday I trained my Pilates teacher (I know, that sounds backwards), and she was teaching a Reformer class after our session and asked if I wanted to take it. I didn't have my heart rate monitor with me, but said "Fuck It! Yes!". I could tell I was pushing it a couple of times, and I stopped myself before getting crazy, but I'm guessing again I was pushing it into the 120's. At one point my teacher if she was getting me up there and I said yes, she was, but I decided I was pissed off and my body was just going to have to deal! That's my new attitude toward my lungs...deal with it you lazy fuckers!

After teaching my private client on Friday morning people started to drift in for the noon Reformer class at the studio, but hmm, no instructor. I called her to see if she was on her way and she thought the class started at 12:30. Oops! I asked if she wanted me to teach the class for her, which she appreciated. That, as it turns out, was my big mistake. Not pushing it with cardio on Wednesday. Not pushing it with Pilates on Thursday. Teaching that fucking class on Friday was the killer. First of all can I just say I hate teaching classes? No time to correct people's form, I didn't have time to prepare and had to think on my feet which I also don't much care for, and I have to TALK TOO DAMNED LOUD!

One of my Saturday clients didn't show so I worked out instead, again without my heart rate monitor (thought I'd be teaching, not doing!). That was not a bright idea. An hour later it was clear I should have rested. Not that I felt terrible, but the body was saying "hey! dumbshit! You just taught that stupid class yesterday after pushing it 2 days in a row and now you expect me to work out? WTF?". Sorry, wasn't paying attention! My "spot" in my chest wall returned, tightness like someone was pressing on me returned, just general "oh shit, I overdid it" feeling returned. Oh well, nothing a little (or a lot) of rest won't cure!

Rested the remainder of Saturday and all of Sunday. Chilled the fuck out. And didn't work out yesterday in preparation for the breathing test which I knew would be a little stressful on the old lungs. Pulmonary Function Test in the next post.

Into the Medical Vortex

So this lung thing has been going on for almost 15 months now. I'm feeling well enough that I think it's time to start doing some cardio again, pushing the limit - forcing my body to step up to the plate. But I want to have some assurance that I'm not being stupid, that upping the activity isn't going to hurt me. I've stayed away from docs until now so I don't have a diagnosis of what this is. But it's time now for some answers.

So it's off I go in search of answers...without letting them suck me too far in.

Step 1. The GP. She was highly recommended by two friends of mine. They know I'm Ms. Integrative Medicine and both said she'd be very open to my way of doing things. She met and talked with me for about an hour. An hour! And she actually listened to me. Ok, so she wasn't right about everything (she told me based on my labs that I shouldn't be having periods anymore, but I researched it and that's old-school thinking) and she declared 7 drinks a week was the definition of a problem drinking for women (7 drinks a week would be a problem for some people, but for everyone? I'm not a fan of one rule applies to everyone). But all in all I liked her very much. She wanted me to see a cardiologist and a pulmonologist.

Step 2. The Cardiologist. Not Dr. Personality, but he listened. Well, with one ear at least. I told him I think this is a lung thing, not a heart thing, but once he heard my heart murmur he went right down the path of heart defect. I've had that friggin' heart murmur my whole life. And heart defect doesn't explain why smoky air or talking too much triggers my symptoms. He wants a full blown stress test and to do an echo cardiogram (ultrasound of the heart, where they'll be able to see my heart valve make its funky sound). I'm declining the stress test, I simply do NOT have blocked arteries. Makes no sense to me, don't need to elevate my heart rate (one of my lung triggers) to prove that that's not the problem. I think that's one of those easy tests that they know your insurance will approve and doesn't require any of their time (a tech they pay $10/hr does the test). Nope. Sorry. But I am going to let them take a look at my heart functioning. Scheduled for Oct. 4th.

Step 3. The Pulmonologist. Would he believe me when I tell him it's a lung thing? Yes. He did. It was clear that he'd read the long summary that I printed out for the GP (wow, that's new!). And this guy finally started asking the right questions...when this started were you having plumbing problems? mold? are you exposed to chemicals in your job? were you ever sick? was your husband sick about the same time? As it turns out, yes, my husband had a really nasty virus (the one and only time he's been sick in the last 7 years) when this whole thing started. He said typically when someone suddenly develops asthma-like symptoms out of the blue it's a bacterial infection that damages the bronchial passages and then once the infection is gone your body gets stuck in the "on" position, continuing the inflammatory response until the damage is completely healed. He said that explains why I'm getting better, the damage is slowly healing. Wow! That makes sense! He wants to re-do the pulmonary function test I did last year (did wrong as it turns out) to get a good reading on how my lungs are functioning. Requires drugs, but ok, just this once. He also said the echo cardiogram would give him useful information, to see how my heart and lungs are playing together. Easy enough I was going to have that done anyway. But he agreed that I don't need a full on stress test. Good to know.

So new pulmonary function test next week, and a echo a few days later (I'm guessing the cardiologist will freak out that I won't do the stress test - too bad!). Finally a follow up visit with the lung guy, who's practice name includes the phrase "Integrative Medicine", and I think he means it. I might have found someone who's not the typical MD. He looked at the list of supplements I take and said they've almost certainly helped me get healthier. He didn't argue when I said I wouldn't take any drugs. He said, yes, try acupuncture, that might be helpful. He knew of the Buteyko breathing exercises. I'm cautiously optimistic...

Drugs and recovery

Been a while since I posted here. That's a good sign, it means I haven't had any setbacks!

It's true. No setbacks. I signed up for the BASI Pilates Teaching Certification Course (Pilates has saved me, how could I not decide to become a Pilates teacher??) which started two weeks ago. Part of what's required is to learn all the exercises, of course, which necessitates practice. Lots and lots of practice. I wasn't sure that I'd be up to the physical challenge, but since Pilates typically makes me feel better (only makes me feel worse when I don't listen to my heart rate monitor!) I figured I was just gonna jump in with both feet and see what happened.

For the last two weeks I've been doing Pilates 5 days a week. That's quite a jump in activity level from where I was even two months ago. I'm wearing my heart rate monitor and resting between exercises when I need to, but for the most part it's non-stop Pilates. And I'm thriving. This is the best I've felt since this whole craziness started. Is it all the lateral breathing (breathing into the sides of your ribs)? Low-heart rate activity? I don't know. I don't care. It just feels great to be active again.

And all without drugs. Any drugs. I admit in the beginning it was pretty scary. But I was more scared of the drugs than of my lungs not working. Asthma drugs didn't work on me, so those were never a temptation. My only option was prednisone, a steroid, and I just wasn't going to go there, way too scary. Steroids are immune suppressors ferchristssake, they give it to organ transplant patients to treat organ rejection. Incredibly powerful drugs, steroids. I rather like my immune system, thank you, I think I'll keep it. Read the potential side effects of prednisone on wikipedia. It should scare the hell out of you. Scares the hell out of me. Side effects like euphoria and mania? Sound far out, right? No. Happened to someone close to me after one single dose. One dose.

Yes, it's a pain in the ass to do things the natural way. I have to eat right. I have to meditate. I have to take garlic, and remember to make myself ginger tea. And not work out too hard. And yes, it's frustrating and sometimes scary to have a setback. But if I was on drugs, would I feel the setback? Would I know that I needed to take it easy? Think about that for a moment. If you're on drugs that make you FEEL good you're much more likely to push past your natural boundaries.

The past 8 months have been long, admittedly. But I've learned a great lesson. Listen, listen, listen to your body. Give it what it needs and let it do its job.

You, The Owner's Manual

If you have any interest in how your body generally operates, pick up a copy of "You, The Owner's Manual". Comprehensive and fun to read. Got mine yesterday for 30% off at Borders. The big moment for me was on page one of the chapter on Lungs (emphasis is mine):

"In fact, when it comes to your airways, the small things post the greatest threat...When you take bacteria, viruses, and other particles into your lungs, your system is able to stop the larger particles, because they get trapped by the lung's natural defenses. They beat the particles out of your windpipes with little brushes called cilia and force them out of your body through coughing, sneezing, and blowing your nose. But even smaller particles - particles we can't actually see - can slip through the defense system much like a great running back breaks tackles. Undetected, these particles actually cause an inflammatory reaction that destroys part of your lung tissue - and puts you at greater risk for various lung disorders."

No shit. That seems a very simple explanation of exactly what happened to me and, from some of the forums I read, in various forms to lots of other people too. The difference for me is that when I read those forums everyone is on some medication or another (or more commonly on 3 or 4). Steroids. Bronchodialotors. And they're not getting better. I, on the other hand, am only on good nutrition, supplements, Buteyko exercises and regular doses of Pilates and seem to be making all kinds of progress. Admittedly, it feels achingly slow at times, but when I read forum posts from people suffering similar symptoms, but going months with no improvement, I suddenly don't feel so bad. Looking back, I've made quite a bit of progress. Spent the weekend talking to my son. Yes, I could tell it was taxing, but 2 months ago I couldn't have spent an hour talking to him, much less 3 days. I'm not saying that my course is right for everybody, I'm sure there are people who are helped by the meds, but I'm saying if results are the measure, my way seems a valid alternative more people should at least consider.

We'll see how much progress I can make in the next 6 weeks. I'm going to be taking a comprehensive pilates certification course which will require me to be working out as much as I'm able. Incentive!!

The ups and the downs

I've never had to deal with an ongoing injury like this lung thing. Messes with your head.

I gradually get better, start to think I'm heading out of the woods (for good this time, right?), then I overdo it and I have a little relapse. That's when it's so easy to get scared. What the fuck IS this exactly? Why do I feel better when I'm working out but sometimes the chest tightness happens several hours later? If a killer Pilates class is bad for me, wouldn't it feel bad when I'm doing it, instead of 5 hours later? And why does one Pilates class make me feel so much better (like last Thursday's mat class) and another wipe me out and get me back to feeling like someone is sitting on my chest (like last Tuesday's reformer class)? I forgot to wear my heart rate monitor on Tuesday. Is it as simple as I just did too much even though it didn't feel like it at the time?

Fuck, this is exhausting...mentally I mean. I'm so sick of being sick. And sick of being scared. Easy to think I'm taking the right course when I'm getting better. But when I have these relapses I start to wonder if there's something I'm doing that I shouldn't be doing, or something I should be doing that I'm not doing, all out of sheer ignorance. Yes. I could go see a doctor again. I think about that occasionally. But a "regular" doctor is just someone I'm going to frustrate and there's not a naturopath in the area. I won't take steroids. I won't take drugs. I won't let them do a stress test on my lungs (after all this work to keep my activity level down I'm going to jump on a treadmill so they can prove to themselves that yes, exercise shuts my lungs down? duh). I won't let them do a lung biopsy (yeah, that'll help me heal faster, cut some of it out). I'm willing to do anything non-invasive...MRI, ultrasound, etc., but those are fucking expensive tests. And once I had a definitive diagnosis (which isn't guaranteed by any means) what would it change? That would just put me back having the argument about taking drugs.

Looking back I can see that I'm getting better. Most of the time I can talk as much as I want. That was not always the case. I can go to the grocery store and Pilates classes and out to dinner. That was not always the case. So even though it's incredibly frustrating to have these little setbacks, I'm bouncing back much, much faster and my setbacks are now better than where i used to be all the time. Must keep my perspective. So I'll keep workin' the program and trying to avoid setbacks. Eat right. Pilates (but not too strenuous). Clean, humidied air. Buteyko exercises. Manage my schedule so I'm not doing too much on any particular day.

Gotta just keep my head down and work the fucking program.