I came to you today to ask you for help. I have been very sick since I was hospitalized last year. Once all the critical, acute things were dealt with, my pulmonologist believed with all his heart that I had a sleep disorder of some sort. He sent me to a sleep lab in January and I was diagnosed with Obstructive Sleep Apnea. It was news to me, because I’ve never had problems with sleeping, don’t wake up gasping for breath, don’t stop breathing in the middle of my sleep (yes, I’ve been watched), don’t snore (yes, others who sleep with me will attest to this), don’t have daytime sleepiness, don’t have difficulty concentrating, don’t have any of the other symptoms that go along with sleep apnea.

In fact, the technician at the titration sleep study in March said I was having apnea episodes while awake… I find it hard to call something sleep apnea when it happens when I’m awake, but I mentioned this to you and you blew me off.

Anyway, I’ve known people who had sleep apnea: an ex boyfriend, my best friend, my daughter, my deceased stepfather. All of them, when treated for it, improved greatly. Quality of life was dramatically increased. Quality of sleep was dramatically increased. They felt better, slept better, looked better… all the way around, it was a wonderful thing. So okay, maybe I don’t have the same symptoms they do. Maybe my sleep apnea is less severe or something. So maybe this therapy will work for me too, and I just don’t know it. So I’ll give it a try. I mean, I didn’t like having to use oxygen when it was prescribed, but when I did use it, it made me feel better–lots better–so now I wear my cannula all the time, without any non-compliance, because I see how it improves the quality of my life.

But even when I did the titration study, the CPAP was a difficult fit for me. First, it was nearly impossible to find a nasal cannula that fit me. The technician fitted me with x-small, and they were still a bit too big for me. Even the oxygen lead they had to use on my was a pediatric cannula, so it fit properly without pulling my nose apart. Who knew I had a baby nose? Anyway, I tried to go to sleep with the CPAP going. So let’s look at the actual data from the two studies:

Without CPAP: 7 minutes to fall asleep

With CPAP: 49 minutes to fall asleep

Without CPAP: Total sleep time 7.45 hours out of a 9 hour study

With CPAP: Total sleep time 5.25 hours  out of a 9 hour study

Without CPAP: Total number of awakenings = 3

With CPAP: Total number of awakenings = 7

Without CPAP: Lowest oxygen level 78, without any oxygen feed

With CPAP: Lowest oxygen level 82, with THREE litres per minute oxygen feed.

Now, the last one really is what gets to me. You see, the titration study started me on 1 liter of oxygen, but the original study started me on none. He only brought oxygen in to me after my sats dropped down to 78. In the original study, he only took me up to two liters per minute, and my lowest oxygen point without oxygen was 76 and 78 with 2 liters. With the CPAP on from the beginning on the titration study, he eventually turned it up to three liters per minute, and I still dropped down to 82. I think if you look at 78 without oxygen vs. 82 with oxygen, you’d realize that 82 with oxygen is actually WORSE than 78 without it. Neither one is really that good – and 87 is the baseline medicare uses for allowing oxygen, while 92 is the baseline many insurances use, and I’m well below both of those.

So CPAP titration didn’t fix the problem. But here’s what I see and don’t understand why you don’t see it: Why was my oxygen saturation LOWER with the CPAP than it was without it? Why did I need MORE oxygen when using the CPAP than I needed when I wasn’t using it?

I think I know the answer to that… and I tried to tell you that, doctor, but you wouldn’t listen to me.

Let me back up now.

So I wake up at 6:30 to take my meds so I am able to even get dressed to meet you at your office at 9am. Mornings are particularly difficult for me, but you only do morning appointments, so I have no choice. I am coming to you because I am sick and I need help, so I’ll deal with the tough morning. I take my meds, lay in bed for about an hour or so before I’m able to get up and around, and I get dressed and go to see you. I wait outside for about half an hour, then they call me back, weigh me (I’d lost bunches of weight and was so excited to see that, yay me!), and then take me into a room. My heart rate, blood pressure, pulse and temperature were all perfect–yay again! I’m feeling confident and good about this appointment. Things are looking up!

You pop your head in and apologize for the delay, said you had a patient who was really sick, and you’d be with me as soon as possible. I’m fine with that. I’d like to think you’d give me that kind of attention when I need it, so I don’t mind one bit waiting for you while you’re being a good doctor. This was promising. Made me feel even more confident about coming to see you. I was actually getting my hopes up.

Your student comes in and asks a bunch of questions. He’s nice, pleasant, personable. Tells me you’ll be in to see me in a minute.

And then you come breezing in, suddenly like you’re in a big hurry, and brush to the computer, ask me which one of us was the patient, question who was with me in the appointment (like that matters? I was the one sitting on the table, you know…) and then you immediately say, “I see you had a sleep study in January and then again you had a titration study in March and that you refused to continue the titration because you didn’t like the CPAP.”

I said, “No, that’s not exactly what happened. It was 6:45 in the morning, and I had been in bed awake for the past hour and 1/2 and the study was to end at 7:00 anyway. One of the leads on my leg came off and the technician came in to fix it, and when he did, he asked me if I just wanted to wrap it up, since even if I fell asleep again, he wouldn’t be able to get any good data from just 15 minutes of sleep before he’d have to wake me up anyway.”

I agreed to wrap it up. I clearly told you, in no uncertain terms, that I did NOT refuse to continue the study at all.

Then you asked me, “Well, what kind of problems are you having with your sleep?”

I said, “That’s just it. I wasn’t having any problems with my sleep. I don’t snore. I don’t wake up gasping for breath…” and basically I repeated to you what I wrote earlier in this letter. And you proceeded to tell me that not everyone with sleep apnea has symptoms, but that doesn’t mean they don’t have the disease. You went on to talk to me about not using heavy machinery and not driving… and I once again tried to tell you: I DO NOT HAVE HYPER-SOMNOLENCE. I DON’T GET SLEEPY DURING THE DAY. I DON’T HAVE DIFFICULTY CONCENTRATING…. were you not listening?

You almost literally rolled your eyes at me, saying you understood, but doctor, you did not understand.

So then you finally got around to asking me about the CPAP and the trouble I had with it. I explained to you that I had difficulty breathing out against the flow. You asked me about the C-flex, whether I had it set at 3, and I answered that I did. I explained how at the end of my exhale, the machine wouldn’t detect that I was exhaling, so it would start to force air down my throat and nose, before I had fully exhaled, causing me to spontaneously breathe in, making me stack breaths. After two or three breaths like this, I’d have no choice but to open my mouth and take a deep breath in or else take off the CPAP mask and breath in, because otherwise, I literally felt like I was suffocating. Stacking breaths like that is a horrible feeling–I suggest you try it some time so you can see what I mean.

I even told you that one night I tried to sleep with the CPAP and woke the next morning with my oxygen on–having woken, unplugged my oxygen, taken my mask off, plugged the cannula in, put the cannula on and turned off the CPAP machine–all without remembering any of it. I woke the next morning sort of freaked out that I could do so much in my sleep without even being aware of it. I don’t like that at all.

The days I used the CPAP, I woke so tired I could barely force myself out of bed. I was falling asleep in my chair all day. I was cranky and irritable, snapping at everyone in my family. I took afternoon naps on those days, and I don’t usually take naps. It was like I had never had a single symptom of sleep apnea in my life, but then you give me a CPAP machine, and suddenly, while using the CPAP, I have all the symptoms of sleep apnea–all the bad ones! Including throwing PVCs. I even tried to talk to you about the PVCs, and you totally blew that off. I was worried about them, because, I mentioned to you right at the end, I have congestive heart failure. You seemed surprised when I said that. You asked your assistant what my EF was–I’m assuming you meant ejection fraction–fortunately, my EF is pretty good, because my congestive heart failure is caused by something other than what you thought.

And that’s what this letter brings me to, doctor… what you thought.

You spent the majority of this appointment discussing my weight. Telling me all the reasons why you think I need to lose weight, how my ‘disease’ as you kept calling it would improve if I’d just lose weight, how the weight clamps down on the legs and makes blood flow bad, how the weight affects my ability to breathe… on and on about how you wanted me to lose weight. Well, you know what? I’d like to lose weight too. And in fact, it was the weight gain that sent me to the doctor the very first time when I started down this path–because I was rapidly gaining weight and didn’t know why.

We know why now, doctor. It’s in my chart. Or didn’t you bother to read that? Or didn’t you bother to read anything about me at all before I came to see you? Did you SEE how much weight I’d lost since the last time I was there to see your colleague? Did you note that I actually weigh less today than I did before all this started, and back then, I could breathe just fine?

I tried to tell you that. I tried to tell you that this breathing stuff didn’t happen because I gained weight–I’m not even THAT big! I know people personally who are bigger than me who have no problems like this at all. I tried to tell you that I was heavier then than I am now and was able to breathe just fine, was active, busy, vital… happy and healthy, even heavier than I am right now. I’m trying to tell you that you didn’t know me then, but I was not the person you see in front of you today–that I have become this person because doctors like you can’t figure out what is wrong with me. I tried to tell you about the cellulitis and the blood clots–and you even told me that what I had might not have been cellulitis–uhm, I was hospitalized, bacterial cultures were taken, your own colleagues diagnosed me and I showed you the scars even.

But you wouldn’t listen. You didn’t listen.

You glanced at my chart, assumed I was non-compliant, saw my weight, and you wrote me off as a lost cause before you ever walked into that room today.

If a doctor prescribed me a medication and sent me home to take it and it caused all the side effects that your CPAP machine has caused me, I would stop taking that medication and come back in to that doctor and ask for other alternatives.

That’s what I was doing today–telling you about the negative side effects of the prescription you wrote for me for the CPAP machine, and asking you for alternatives. And the only one you gave me was to get a machine that auto-titrates–but I’ll still have the same problem breathing out against that flow as I do with the machine I have now. I told you that people in my pulmonary hypertension support group have said that a lot of people with PAH have to use Bi-Pap, making it easier to breathe out against the flow, and I was wanting to consider trying that. You said that Bi-PAP was too complicated, too expensive (since I’m self pay), and that you would only consider it if I tried the CPAP and it failed.

And you used that word over and over again. You said I failed at the titration and that I failed at compliance. You said that I should try this auto-titrating CPAP before you declared CPAP therapy a failure. You used that word over and over again.

I am not a failure.

I am alive right now against overwhelming odds, something you reminded me off, letting me know that over 30% of all people with my condition have a less than one year mortality rate. Was that supposed to be encouraging? See, I don’t hit a year until September… so am I supposed to be afraid I’m going to die still or were you basically trying to tell me I should just be grateful I’m alive at all and learn to live with this reduced quality of life? Why would you even say that to me when it had nothing to do with what we were discussing.

Just because the odds say I should be dead, that means I’m not supposed to want to improve or have a good quality of life now?

Plus, you had no hand in saving me… so you don’t get to hold the fact I survived what should have killed me over my head.

If anything, the fact I am alive right now against extremely overwhelming odds should make you MORE inclined to want to help me. See, I’m a fighter. A survivor. I don’t give up. I don’t give in. I don’t break down. I don’t back down.

I was coming to you because I want to live. I deserve to live. And I deserve for my life to be as good as I can possibly make it.

You offered me no solutions. No help. Nothing. Lose weight, get an auto-titrating machine, and get out of my clinic… basically. That’s how I felt. That’s how you made me feel.

You made me feel like a failure. You made me feel worthless. You took my excitement at having lost weight–something I’ve been working very hard to do–and made me feel fat and ugly and useless. You made me feel like I had no hope for my future, like you looked at me and didn’t think I even deserved that hope.

But I won’t hold on to those feelings. They were fleeting feelings, not my own, not how I really feel about me. I am so angry with you for pushing me in this direction of thought, but I blame myself for letting you do it. I don’t blame you, really. It’s my fault for letting you push me there. It’s my fault for not getting up from that table and walking out on you the moment I realized this was going nowhere fast. It’s my fault for not standing up for myself, for advocating for you to treat me better for the money I was paying you.

I don’t blame you. You are a product of this useless, worthless healthcare system we have. You are nothing more than one more doctor who can’t think for himself, who can only read what’s on a piece of paper from a lab result, who can’t look at the patient and say, “How can I make you feel better?”

And I am a product of an environment in which I believed doctors were supposed to actually do that… you know, make patients FEEL better.

It’s my fault for thinking that. I’ve had years of experience to show me that’s not what most doctors do.

But I will tell you this doctor: I’ve cheated death more times this past year than I can count, and I’m going to keep on cheating it. One day, I’m going to be healthy again, strong, vibrant, active and slender again… and I’ll get that way because *I* took care of myself, not because you or any one of your colleagues gave a damn about me or my quality of life.

What pisses me off the most about this is, when that day comes, I won’t even be able to rub it in your face, because you’ll just look at me and say, “I told you you’d feel better if you lost a little weight…”

And it’s that arrogance and blatant WRONGNESS that hurts people. You are a doctor. You’re supposed to heal. The sad thing is, there will be people you will kill, people whose death you will be at least partially responsible for, because you will make them feel the way you made me feel, and they won’t have the support that I have, the love that have, the will to live that I have. They will give up.

And THAT, dear doctor, will be your fault. You will have killed that person, little by little, you and your colleagues, and sadly, no one will ever hold you accountable.

I’ll leave you with something I heard once on a television show, “I don’t know where you doctors lose your humanity, but you lose it. You know, if all of you, at the beginning of your careers, could get very sick and very scared for a while, you’d probably learn more from that than from anything else. You better start listening to your patients. They need to be heard. They need caring. They need compassion. They need attending to. You know, someday doctor, you’re going to be on the other side of the table, and as angry as I am and as ANGRY as I always will be, I still wish you a better doctor than you were to me.”

Sincerely,
Michy… the survivor, and stuff.