I’m a weird case. Doctors have always had trouble trying to figure out exactly why I have trouble breathing. The allergies have always been quite obvious; both asthma and allergies are prevalent in my family. After years of moving around and trying to find doctors who believed me, they also discovered I have:
- Hiatal Hernia (from a two-year chronic cough a doctor didn’t want to treat)
- GERD (from the hiatal hernia)
- Obstructive Sleep Apnea (from my tongue that covers half of my airway, the giant tonsils, and other weirdness in my airway)
- Vocal Chord Dysfunction
- Left Hemidiaphragm that doesn’t move
- Anxiety because not being able to breathe well for 25 years makes you anxious
Last year restrictive lung disease started appearing on my breathing tests. Lately I’ve been short of breath often from walking up stairs, doing normal things like making the bed, and occasionally my oxygen drops into the 80s for a while.
While telling one of my lung docs about my symptoms, it was mentioned I should be assessed for pulmonary hypertension (PH) with a possible cardiac follow-up. So I’ve been reading up on this rare lung disease, and of course most of the symptoms seem to match up with what I’ve been experiencing. The only problem is those same symptoms can match up to a lot of conditions. I don’t want to have PH, but if that’s what ails me, it could be treated.
I’ve been in this situation before where a doctor thinks they may have it figured out. At one point everyone was certain I had allergic bronchopulmonary aspergillosis. I’m very allergic to aspergillus mold, and I had all the symptoms expect the one where you cough up oddly shaped chunks of phlegm. Over the years I’ve been told I might/probably have:
- a fungal mass in my lungs
- chronic bronchitis
- right-heart failure
…to name a few. I’ve even been told I don’t have asthma and was taken off all maintenance medications only to go back on them 6 months later.
Last month my jaw started hurting, I talked to my dentist, and was referred to a TMJ specialist who told me my jaw is causing a lot of my breathing issues by sitting back too far and pinching my airway. I’m willing to look into this, but am not willing to pay the $2500 upfront. I’m currently in negotiations with my insurance company for a pre-certification to cover it.
So in the meantime I will not get my hopes up, I will not let the internet convince me of a diagnosis, and I will wait to hear from my doctors.
Over the summer I had some changes with doctors. One change was to see a vocal chord dysfunction (VCD) specialist to make sure I’m on top of that condition. The guy was very nice and extremely informative. He wanted to stick a camera up my nose and down my throat like every other ENT I’ve ever seen. That wasn’t a big deal. The surprise came when he informed me he was going to stick a syringe into my neck in order to numb my larynx.
He couldn’t quite find the spot he wanted to because of my beard. He cracked a joke about next time I better have it shaved off. He stuck the needle in, told me I could cough soon, and when he pushed the plunger in I could hear the liquid spraying inside of my throat. The sudden urge to cough was awful. This definitely wasn’t something I’d rank high on the pain list, but it’s easily in the top 5 for uncomfortable.
It turned out all the wheezy stridor I’ve had for ages isn’t coming from my throat. My lung doc says it is, but the throat doc/VCD specialist says no. He gave me some more information about the condition I hadn’t heard before and went over some techniques in case my throat is closing up on me.
Well, it’s my *favorite* month of the year and 2015 is similar to the rest. There are some bright spots though, I haven’t been in the hospital yet this summer, my meds have been tweaked to a decent combination, and I have an appointment with a VCD specialist next week. I’m currently on my 3rd prednisone taper since July and my lung doc put me on some anti-biotics today. I’m hoping I can buck up over the weekend and get back to work on Monday. I’m hoping I can weather out the summer and then have a decent winter and spring. We’ll see what happens.
A couple of months ago I ended up at the ER again short of breath, with chest pains, flaring allergies, and low oxygen. They ended up keeping me a few days mostly because my o2 was in the 80s and my ABG came back not good. I ended up connecting with a great hospitalist who looked through my medical history and really wanted to track down the root cause of my health issues. She ran some tests and was in close contact with both of my lung doctors throughout the process. After being released I saw my second pulmonologist out in PA, did more tests and it was determined I do not have asthma.
Even after a couple of months it feels weird to say that as it has been a big part of my life for the past 23 years or so. I still have the breathing problems, but it was confirmed I do have vocal chord dysfunction (VCD) and my chords are pinching on exhale which really mimics asthma. I was often asked if it was hard to breathe in, assuming VCD could be pinching my throat shut on inhale, but for me it was the other way around. I was taken off a lot of medications and given a few new ones to take. I’m still having a rough time with Fall allergies, the rotting leaves outside, and smoke outside. I’m looking forward to winter when the outdoor allergens freeze and I’ll have a few months of better breathing. Hopefully my health will be in much better control next year.
I have horrendous seasonal allergies. They affect me all year long, but the worst of it is Spring through Fall. Today I feel like it has officially started. My sinuses and part of my chest burn when I breathe in the air outside. My eyes are swelled up, and my face hurts. This will by my life until late November or early December. Most of the time I get used to it and forget I even feel this way, but I’m just now feeling it again after a several month hiatus so it’s noticeable. Julius Ceasar was told to beware the Ides of March and so do I. Along with the start of tree pollinating, I often cough up blood around mid-March. This hasn’t happened since I started Xolair, so here’s hoping the hemoptysis stays away again.
Also saw my out-of-state lung doc again. For now I’m going to keep doing what I’m doing and try really hard to not increase my prednisone. Based on my history of PFTs and other symptoms, we’re looking at VCD as a possible undiagnosed condition. With asthma you generally have trouble getting air out, not in. At times I experienced one or the other, or both. Unless PFTs in the next six months show specific results or other things happen, I’ll do another methacholine challenge next visit with a laryngoscopy to see what happens. If that comes back positive I might be able to get off some of the asthma medications in order to treat the real problem. The other day on FB I saw my buddy Art post something about Western medicine focusing on symptoms, not root causes. The more I think about this, the more it rings true. The other concerning fact is I’ve been seeing lung specialists for 20 years and this is the first time anyone has tried to even look into this. I’ve heard of people being misdiagnosed with asthma and heavily medicated for years for the wrong condition. It makes you wonder how many others are taking drugs to treat symptoms that don’t match their diagnosed condition.
Several years ago my allergist at the time thought some of my breathing issues could reside in my throat. Unfortunately, like many of my other conditions, at the time I wasn’t experiencing enough symptoms for the proper doctor to follow up on that. Now several years later things like vocal chord dysfunction have been brought up once again and I figured I need to get that checked out.
My first step was to once again acquire a local ENT. I had a great one before we moved and then had a terrible experience after we moved. The doctor was so-so and the staff was a nightmare to deal with so I just quit going. I had some reservations about returning, but decided I needed to just man up and do it. Turned out that doctor with whom I was not thrilled no longer worked there and the new one they switched me to was amazingly better. He was somewhat impressed with my list of medications and conditions and thought it’d be a good idea to go ahead and get a video laryngoscopy and see what that turns up.
Last week I went to the rehab center and met with a speech pathologist. The easy, non-evasive scope wasn’t able to do the trick due to my over-sized tonsils and uvula, those wonderful things that greatly contribute to the OSA and enlarge when the allergies act up. Everything was a little red which can be caused from the GERD and all the inhalers I use. There was also some thickening in my vocal chords most likely caused by the years of coughing and throat clearing. The good news is there wasn’t any blatant signs of VCD, but there’s probably a little something going on there which is contributing to everything else.
For now I’m following up with the speech pathologist who is going over some stretches and voice exercises with me to make sure I’m speaking with the right part of my throat and not tensing up. The staying relaxed bit is good for several reasons and most of what she’s having me do are things I’ve done in the past to one degree or another when I used to lift all the time. It’s been a wild and crazy 8 months. It’d be great if my five doctors could get this figured out for me.