Don’t Hold Your Breath

So, the pulmonologist. He wasn’t terrible, but he wasn’t the wonderful doctor who will do anything to figure out what’s wrong, either. The whole experience was exhausting and confirmed what I’ve been feeling for a long time: I may never find a doctor who can help my dysautonomia, or whatever is making me feel so shitty, let alone understand it in the first place.

I always try to prepare as thoroughly as possible for appointments. I do my homework and bring as much information as I can. This appointment was no exception. I filled out all of the paperwork they mailed me and printed out my surgical history and hospitalizations on a separate sheet because they don’t fit in the lines anymore. I brought my medications with me and actually remembered to bring all of my supplements. Sometimes, it seems like the more prepared I am for them, the less prepared they are for me.

My appointment was supposed to be at 12:30, but I got there early after getting breakfast and walking around Walmart for a while. So, I waited. And waited. And waited. The waiting room continued to fill up while nobody was being called back. Finally, I was called back, vitals taken (but not before starting a fistfight with the scale), put in a room, and told the doctor would be there shortly. And then I waited. And waited. And waited. I sat there on a bench that was almost as creaky as my body, my pain intensifying as time crawled onward.

The same nurse who took my vitals poked her head in and asked if I was ok and if I wanted my mom to come back there. I said I was fine and that I didn’t need my mom to come back there. She explained that the doctor was still at the hospital, but he’d be back in just a few minutes. I’ve heard that line before.

About ten minutes later, a different woman came in and said that we needed to get started on some of the tests that the doctor wanted to have done. By that time, I’d been sitting up for so long that moving was nearly impossible. I was able to stand up without bursting into flames, but walking was another story. My legs were shaking so badly, but the woman barely noticed. She continued to walk at her normal pace, me wobbling along behind her.

She approached me incredulously about why I was there. She said she didn’t understand why my doctor sent me there before trying to treat me. I explained my conditions to her, and she looked them up online to read about them herself. She then proceeded to make comments about people who had it worse than I did. For the mother of someone with type 1 diabetes, you’d think she would be more compassionate.

Then came about a half hour of pulmonary function tests, a breathing treatment, and then more pulmonary function tests. Pulmonary function tests consist of breathing strangely into a tube while locked in a box, all while a lady screams at you over a loudspeaker to BLOW HARDER BLOW BLOW BLOW BLOW BLOW!!! It gets old pretty quickly. My jaw was not amused. There was drool everywhere. Drool-moistened cardboard smells nasty.

After the PFTs, I was taken back to my room to wait for the doctor. Ten minutes later, the young, good-looking doctor was shaking my hand. I explained why I was there. He asked me a few questions, like whether or not I smoked or was currently exposed to secondhand smoke (no and no). Surprisingly, he didn’t mention my EDS or dysautonomia. I mentioned it several times, but only got a response about it when I really probed him. Despite the fact that I wrote about my severe visual impairment in the paperwork and told him about it that very day, he made several nonverbal gestures that I couldn’t see, and he got angry with me when I didn’t respond to his gestures.

He said I have very small bronchial tubes and underdeveloped lungs. There is nothing they can do about it. I asked him a few times if the dysautonomia had anything to do with why breathing seems to take so much effort, and he finally and nonchalantly explained that my breathing muscles aren’t getting signals from my brain. He said this will most likely continue to get worse until…and he trailed off. I asked him what would happen if it does get worse. He changed the subject. I asked him a second time. He quickly scribbled out a prescription for an inhaler and an order for labwork and a chest x-ray. I asked how the inhaler would help with my problems if I didn’t have asthma. He said he would see me again in three months.

So there you have it. Yet another doctor who knows of dysautonomia, but has no idea how to manage it or even try to lessen its symptoms. The whole ordeal took four hours, and I left there feeling worse than when I arrived. Oddly (and frustratingly) enough, mom wasn’t pissed off by how the appointment went. She’s just happy whenever we find out I don’t need surgery.

I’m done. I’m done being told I’m only going to get more and more uncomfortable and dysfunctional as time goes on but, oh, there’s nothing we can do for you. And yet I see other people with dysautonomia and EDS who have doctors who keep trying and fighting to help their patients feel better. Why can’t I have one of those doctors? Do I need more money (yes)? Fancier things (sure)? Bigger boobs (nah)?

Maybe it’s not the doctor. Maybe it’s me. If I was just a better, easier patient, maybe things would be better and easier for me.

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6 Comments

Filed under Anger, Breathing, Doctors, Dysautonomia, EDS, Frustration, Specialists, Tired

6 responses to “Don’t Hold Your Breath

  1. It’s not you–it’s them.

    • Thanks for the reassurance. It’s so hard to remember that sometimes, especially since my doctor spoke so highly of him. Just because someone tells you a specialist is good does not mean it’s true.

  2. Hey, thanks for this detailed account of an appointment experience. I’m sorry they were so inconsiderate, the woman walking far ahead of you, the doctor not acknowledging your visual impairment. It seems strange to get that from medical professionals!

    Regarding your dysautonomia, unfortunately, I think it can be a huge difficulty, dealing with doctors who don’t understand or specialize in your condition(s). I’ve found that at the E.R., that they know the basics of shunt malfunction, but didn’t even know that a shunt infection won’t show up in a C.T. scan or that a C.T., or M.R.I. even, can miss mild hydrocephalus. So it’s a good thing you’re so prepared, I think, because you can help fill in the gaps. Is that why you bring so much information with you? I also find that notes help me remember everything — and there’s a fair bit! Notes also help me if I get nervous and forget to mention things.

    I found you through Yvette’s blog comments. I’m glad you found her… Seems like you can connect through these negative doctor experiences. It really helps to have that support, eh?

    • Hi Ashley! Thanks for reading and commenting! I’m sharing my experiences, whether they be good or bad, in an effort to help others somehow. Just helping someone feel less alone goes a long way, and it helps me feel better about bad experiences.

      Having the unfortunate experience of incompetence in the ER is one of the most terrifying things ever! This happened to me around Christmas of 2007. It was nowhere near as serious as a shunt infection, but it was still scary and left me questioning the abilities of all medical professionals.

      I can’t emphasize enough how important it is to stand up for ourselves, and even to have a trusted family member or friend to advocate for us when we can’t advocate for ourselves. I just wish all doctors would appreciate it, too (I’m almost finished with a post that talks about this issue).

      I bring information with me because most doctors I see don’t know much about EDS or dysautonomia. I want to be able to give them information that they can look at and understand quickly so they can’t just get out of trying to treat me because they don’t know what they’re dealing with (yes, I’ve been discharged from care because they just didn’t know anything about what I have, they didn’t even bother to look it up!). I bring a list so I don’t forget anything, because my history is quite extensive. I also use the list so I don’t forget things due to nervousness.

      Anyway, I’m glad you found my blog and I hope you decide to keep reading! I took a quick look at your blog, and I’ll check it out more thoroughly later, but it looks like we have a lot in common (I’m nocturnal, too!). 🙂

  3. Hello dear, I can completely relate with the frustration of constantly being told there’s nothing they can do. Have you been to http://www.dinet.org? That’s where I found my, ready for it? AUTONOMIC SPECIALIST!!!! Yes, there is such a thing! I was amazed, and found one pretty close to me. He is fantastic and I am going through a bunch of autonomic testing next week. I really suggest you hop over there. I also have breathing issues and have been through PFTs with no answers. Luckily, I didn’t have to sit in the dreadful booth. I was able to do it in a room and was given tissues to wipe the drool. I also had a lot of trouble getting enough air for the test. I was told that I don’t get deep enough breaths and I asked what can be done about it, I got a blank stare. Hopefully, this testing will be able to shed some light. I and I really hope you are able to find some relief. Have you looked up your breathing issues (I’m not sure how you word it) to see if there are any possible treatments? Let me know if there is any! Eh, knowing me and my lust for knowledge I will probably look it up myself!

    • Oh I know about autonomic specialists. I just haven’t been able to get myself to one, yet.

      I just checked out DINET – there is only one place in Tennessee and only one in Virginia, also. They are both more than 6 hours (each way) away from me. I am going to have to go out-of-state for this, most likely. The issue here is traveling. I’m broke and it’s hard to travel, both financially and physically.

      I’m terrified that traveling for this will wind up being a waste of time. So many other appointments have wound up being a waste, and it would hurt to go through traveling, time, and possibly money to end up in the same place. I’m only going to see someone if I’ve heard from people I trust that s/he is truly excellent.

      They said the same thing to me about my breathing, and because I don’t get a deep enough breath, I wind up breathing too fast. Apparently, my breathing muscles are also shot. They blamed it on the dysaut, but I wonder if there isn’t anything else going on. I had another doctor mention eventually putting me on oxygen, but when I asked him if he could just go ahead and do it, he flaked out. He sent me on my way with an order to have my GP give me an Rx for a wheelchair, which I’m supposed to use every time I’m outside of the house, but I’m too damned stubborn.

      I ran into someone online whose autonomic specialist does hydration therapy. I wrote to her to ask her who it is, but haven’t heard back yet.

      I hope your autonomic testing goes well and gives you some answers as to what’s going on. I also hope you can start some treatment that helps you to feel better.

      I haven’t lost hope completely. I’m not living in the “right” area for good doctors. My mom has literally asked me to find out where my friends who have great docs live, and we may consider relocating there. So, we’ll see what happens. I’ve just gotta keep hanging in there. 🙂

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