Most small pulmonary nodules are benign but….

Prepare yourself, this is a long one.  According to the Cleveland Clinic, there are two main types of pulmonary nodules: malignant (cancerous) and benign (noncancerous). Over 90% of pulmonary nodules that are smaller than two centimeters (around 3/4 inch) in diameter are benign.  My nodules are only 2-3 millimeters.

Because my nodules are so small, a biopsy is not really an option and neither is a pet scan and besides that, the Pulmonologist didn’t feel either were necessary because they are so small.  The only concern that he had was that they are located in the upper right lung and if they were cancer, this is most likely the place they would be located.  He wants me to have a follow up CT Scan in 6 months and if they haven’t grown, I should be in the clear, as far as lung cancer goes anyway.

That’s the good news.  The bad news is that I failed the Spirometry test.  Apparently, I can breathe in but not out.  That didn’t make a lot of sense to me because when I had breathing problems before it was as if I couldn’t breathe in enough air.  I never felt like I had a problem expelling it and I mentioned this to my regular doctor and also the fact that this had only happened in the last year and the only thing that I could think of that was different was that I was taking Topiramate.  So my doctor and I looked it up and realized that breathing problems, bronchitis, and even pneumonia had been reported with that drug.  I mentioned all of this to my pulmonologist and he dismissed it immediately.

It pissed me off.  A lot.  I mean a whole hell of a lot.  No one knows my body like I do and I am NOT an idiot.

The pulmonologist said that chronic bronchitis or smoking when I was younger caused this.  I told him that I had gone to a pulmonologist years ago (about a year after I quit smoking) and had several lung function tests and scans done and everything was fine.  There were no signs of disease and I haven’t smoked in years.  He then insisted that I have COPD as a result of chronic bronchitis.  So, I told him that I had not had bronchitis at all in the previous 10 years, only in the last year, since taking Topiramate.  And I had had it twice in the last year with little coughing and no mucus at all.  I also told him that the day I stopped taking the drug I could breathe better and that every day it gets better.

And just because I need to prove things to people to see if they are open to learning, or idiots that should be written off, I showed him the sites where many people had complained of respiratory issues with Topiramate.  He said no one should go to the internet for medical advice.  So, I showed him a case study that I found in the American Journal of Medicine about a woman who almost died from acute eosinophilic pneumonia as a result of taking Topiramate.  He said that it was a rare case and he didn’t think my case was related to a drug at all.

But I do.  And I feel strongly about it.  And I have my regular doctor on my side because she believes it too.

I had MRI’s done a year and a half ago and they showed no issues at all.  I have never had breathing problems in the past and I’ve been a runner for years.  I scheduled a follow up in six months and he wanted to prescribe an inhaler but I don’t feel that I need it so I politely declined.  He then said that he did find it perplexing that I’m able to run for miles at a time despite what the test showed.  He also admitted that things didn’t really add up but he still refused to believe that this may all be drug induced and he said that with COPD eventually, ‘my wheels will fall off the wagon’, whatever the hell that means!  Admittedly, he said he is not a runner, is fairly sedentary and needs to exercise but cant understand why anyone would want to run.

I won’t be at that follow up appointment.  I’ve already scheduled with another physician who specializes in immunology and allergies and focuses on issues regarding the lungs.  Unfortunately, my insurance company will not pay for the visit because she isn’t in the network but I don’t care.  I will curb my shopping for the next year if I have to because she was highly recommended and I am not fucking around with my health.

And for the record, I ran three and half miles this morning.  And it felt amazing and healthy.

Thank you to everyone for the prayers and well wishes.  I won’t stop until I find out what’s going on, I can promise you that.  And I’ll still be running when I’m 102!

My fitness trackers may have possibly saved my life.

Some days it’s hard to write because I like to make people happy. I like to make you laugh if I can, but I can’t do that today and so if you want to read something funny, skip this post.

Around 2 months ago, give or take a few days, I was having trouble catching my breath when I was running.  At first I thought it was the weather or maybe the fact that I hadn’t been running as much as I had a few weeks prior but then it got worse and it would happen randomly throughout the day.

I had an appointment scheduled with my regular doctor to check out my arm and hand so I decided to ask her about it.  She didn’t really listen to me at first because she was so focused on the reason I was there, which was for my arm and hand, but I insisted.

I told her that I originally had trouble breathing when running but that it was getting worse and now happened sporadically throughout the day.  She said it was probably deconditioning since I hadn’t been running all that much, but I persisted.  I told her that I still managed to log at least 10-15,000 steps a day, ride my bike, and that I had been running quite a bit right up until the visit.  The doctor asked how much I was running currently versus a few weeks ago and again she said it was probably deconditioning.

I got the feeling she didn’t believe me and so I whipped out the stats from my fitness trackers and I showed her my workouts.  She looked surprised and asked when I last had a chest x-ray.  I told her I wasn’t completely sure but it was at least 10 years ago and then she scheduled one, immediately.

A year earlier I had encountered the same symptoms and I had been diagnosed with bronchitis so I was completely expecting her to tell me that I had it again and I actually forgot all about it until two days later.

“The doctor has asked me to call you to let you know that a density was found on your upper right lung.  We have requested a CT Scan immediately and someone will be calling you to arrange it.  Please come in as soon as possible,” said the nurse on the other end of the line and then she hung up.  That was on a Wednesday and I spent the next four days waiting for a that never came.  I was beside myself with fear.  I was freaked out and all I could think about was what ‘a density’ could mean.

I finally called the doctor myself and the CT scan was scheduled within days.  It came back showing a few pulmonary nodules, a few blebs, and hyper inflated lungs, all of which I had to Google.  I was terrified but the doctor insisted that it could have been much worse.  She told me I needed to see a pulmonologist immediately and I waited 6 weeks for the next available emergency appointment, which is today.

I have no idea how serious this is but I’m hoping it isn’t.  I am doing everything in my power to expedite my appointments and testing, and my mom is here for emotional and moral support.  Despite everything, I am super thankful that I had my stats from my fitness trackers because without them, I don’t think the doctor would have ordered that chest x-ray and who knows what would have happened.

I’m off to the pulmonologist, wish me luck.

Thursday things I’m thinking about

Am I the only person who cracks up when a parent uses technology?  I mean I’m sure the Kid laughs his butt off most every time I ask him for tech support but for some reason the funniest person ever to use technology is my mother.

facetiming with mom

That meme above is completely legit, it’s what I see when I facetime with my mom.  Every. Single. Time.

Last year when she went with me to visit the Kid, the Kid showed her how to use Siri.  And now she thinks Siri is her best friend.  She uses it incessantly.  I tried to teach her other things like how to use different apps, apps like Waze for traffic, but that didn’t work out.

She didn’t like it.  And it was almost as bad as teaching her how to use her computer.

mom and siri

But the most annoying thing is when I ask her something.  Instead of the typical mom advice that I’m used to getting, you know that sweet sound advice you really need, she tells me to ‘Google it’.  What the hell mom?

How well do your parents understand, the google?  

Can your parents facetime with you and actually show you their entire face?