{"id":614,"date":"2012-06-09T21:18:33","date_gmt":"2012-06-09T21:18:33","guid":{"rendered":"http:\/\/michelledevon.com\/?p=614"},"modified":"2021-01-03T21:22:23","modified_gmt":"2021-01-03T21:22:23","slug":"dear-doctor","status":"publish","type":"post","link":"https:\/\/michelledevon.com\/index.php\/2012\/06\/09\/dear-doctor\/","title":{"rendered":"Dear Doctor"},"content":{"rendered":"

\"\"<\/a>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\u2019ve never had problems with sleeping, don\u2019t wake up gasping for breath, don\u2019t stop breathing in the middle of my sleep (yes, I\u2019ve been watched), don\u2019t snore (yes, others who sleep with me will attest to this), don\u2019t have daytime sleepiness, don\u2019t have difficulty concentrating, don\u2019t have any of the other symptoms that go along with sleep apnea.<\/p>\n

In fact, the technician at the titration sleep study in March said I was having apnea episodes while awake\u2026 I find it hard to call something sleep apnea when it happens when I\u2019m awake, but I mentioned this to you and you blew me off.<\/p>\n

Anyway, I\u2019ve 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\u2026 all the way around, it was a wonderful thing. So okay, maybe I don\u2019t 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\u2019t know it. So I\u2019ll give it a try. I mean, I didn\u2019t like having to use oxygen when it was prescribed, but when I did use it, it made me feel better\u2013lots better\u2013so now I wear my cannula all the time, without any non-compliance, because I see how it improves the quality of my life.<\/span><\/p>\n

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\u2019s look at the actual data from the two studies:<\/p>\n

Without CPAP:<\/strong>\u00a07 minutes to fall asleep<\/p>\n

With CPAP:<\/strong>\u00a049 minutes to fall asleep<\/p>\n

Without CPAP:<\/strong>\u00a0Total sleep time 7.45 hours out of a 9 hour study<\/p>\n

With CPAP:<\/strong>\u00a0Total sleep time 5.25 hours\u00a0 out of a 9 hour study<\/p>\n

Without CPAP<\/strong>: Total number of awakenings = 3<\/p>\n

With CPAP:<\/strong>\u00a0Total number of awakenings = 7<\/p>\n

Without CPAP:\u00a0<\/em>Lowest oxygen level 78, without any oxygen feed<\/strong><\/p>\n

With CPAP:<\/em>\u00a0Lowest oxygen level 82, with THREE litres per minute oxygen feed.<\/strong><\/p>\n

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\u2019d realize that 82 with oxygen is actually WORSE than 78 without it. Neither one is really that good \u2013 and 87 is the baseline medicare uses for allowing oxygen, while 92 is the baseline many insurances use, and I\u2019m well below both of those.<\/p>\n

So CPAP titration didn\u2019t fix the problem. But here\u2019s what I see and don\u2019t understand why you don\u2019t 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\u2019t using it?<\/p>\n

I think I know the answer to that\u2026 and I tried to tell you that, doctor, but you wouldn\u2019t listen to me.<\/p>\n

Let me back up now.<\/p>\n

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\u2019ll deal with the tough morning. I take my meds, lay in bed for about an hour or so before I\u2019m 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\u2019d 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\u2013yay again! I\u2019m feeling confident and good about this appointment. Things are looking up!<\/p>\n

You pop your head in and apologize for the delay, said you had a patient who was really sick, and you\u2019d be with me as soon as possible. I\u2019m fine with that. I\u2019d like to think you\u2019d give me that kind of attention when I need it, so I don\u2019t mind one bit waiting for you while you\u2019re 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.<\/p>\n

Your student comes in and asks a bunch of questions. He\u2019s nice, pleasant, personable. Tells me you\u2019ll be in to see me in a minute.<\/p>\n

And then you come breezing in, suddenly like you\u2019re 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\u2026) and then you immediately say, \u201cI 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\u2019t like the CPAP.\u201d<\/p>\n

I said, \u201cNo, that\u2019s 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\u2019t be able to get any good data from just 15 minutes of sleep before he\u2019d have to wake me up anyway.\u201d<\/p>\n

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.<\/p>\n

Then you asked me, \u201cWell, what kind of problems are you having with your sleep?\u201d<\/p>\n

I said, \u201cThat\u2019s just it. I wasn\u2019t having any problems with my sleep. I don\u2019t snore. I don\u2019t wake up gasping for breath\u2026\u201d 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\u2019t mean they don\u2019t have the disease. You went on to talk to me about not using heavy machinery and not driving\u2026 and I once again tried to tell you: I DO NOT HAVE HYPER-SOMNOLENCE. I DON\u2019T GET SLEEPY DURING THE DAY. I DON\u2019T HAVE DIFFICULTY CONCENTRATING\u2026. were you not listening?<\/p>\n

You almost literally rolled your eyes at me, saying you understood, but doctor, you did not understand.<\/p>\n

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\u2019t 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\u2019d 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\u2013I suggest you try it some time so you can see what I mean.<\/p>\n

I even told you that one night I tried to sleep with the CPAP and woke the next morning with my oxygen on\u2013having woken, unplugged my oxygen, taken my mask off, plugged the cannula in, put the cannula on and turned off the CPAP machine\u2013all 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\u2019t like that at all.<\/p>\n

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\u2019t 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\u2013all 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\u2013I\u2019m assuming you meant ejection fraction\u2013fortunately, my EF is pretty good, because my congestive heart failure is caused by something other than what you thought.<\/p>\n

And that\u2019s what this letter brings me to, doctor\u2026 what you thought.<\/p>\n

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 \u2018disease\u2019 as you kept calling it would improve if I\u2019d just lose weight, how the weight clamps down on the legs and makes blood flow bad, how the weight affects my ability to breathe\u2026 on and on about how you wanted me to lose weight. Well, you know what? I\u2019d 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\u2013because I was rapidly gaining weight and didn\u2019t know why.<\/p>\n

We know why now, doctor. It\u2019s in my chart. Or didn\u2019t you bother to read that? Or didn\u2019t you bother to read anything about me at all before I came to see you? Did you SEE how much weight I\u2019d 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?<\/p>\n

I tried to tell you that. I tried to tell you that this breathing stuff didn\u2019t happen because I gained weight\u2013I\u2019m 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\u2026 happy and healthy, even heavier than I am right now. I\u2019m trying to tell you that you didn\u2019t know me then, but I was not the person you see in front of you today\u2013that I have become this person because doctors like you can\u2019t figure out what is wrong with me. I tried to tell you about the cellulitis and the blood clots\u2013and you even told me that what I had might not have been cellulitis\u2013uhm, I was hospitalized, bacterial cultures were taken, your own colleagues diagnosed me and I showed you the scars even.<\/p>\n

But you wouldn\u2019t listen. You didn\u2019t listen.<\/p>\n

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.<\/p>\n

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.<\/p>\n

That\u2019s what I was doing today\u2013telling 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\u2013but I\u2019ll 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\u2019m self pay), and that you would only consider it if I tried the CPAP and it failed.<\/p>\n

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.<\/p>\n

I am not a failure.<\/p>\n

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\u2019t hit a year until September\u2026 so am I supposed to be afraid I\u2019m going to die still or were you basically trying to tell me I should just be grateful I\u2019m 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.<\/p>\n

Just because the odds say I should be dead, that means I\u2019m not supposed to want to improve or have a good quality of life now?<\/p>\n

Plus, you had no hand in saving me\u2026 so you don\u2019t get to hold the fact I survived what should have killed me over my head.<\/p>\n

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\u2019m a fighter. A survivor. I don\u2019t give up. I don\u2019t give in. I don\u2019t break down. I don\u2019t back down.<\/p>\n

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.<\/p>\n

You offered me no solutions. No help. Nothing. Lose weight, get an auto-titrating machine, and get out of my clinic\u2026 basically. That\u2019s how I felt. That\u2019s how you made me feel.<\/p>\n

You made me feel like a failure. You made me feel worthless. You took my excitement at having lost weight\u2013something I\u2019ve been working very hard to do\u2013and 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\u2019t think I even deserved that hope.<\/p>\n

But I won\u2019t 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\u2019t blame you, really. It\u2019s my fault for letting you push me there. It\u2019s my fault for not getting up from that table and walking out on you the moment I realized this was going nowhere fast. It\u2019s my fault for not standing up for myself, for advocating for you to treat me better for the money I was paying you.<\/p>\n

I don\u2019t blame you. You are a product of this useless, worthless healthcare system we have. You are nothing more than one more doctor who can\u2019t think for himself, who can only read what\u2019s on a piece of paper from a lab result, who can\u2019t look at the patient and say, \u201cHow can I make you feel better?\u201d<\/p>\n

And I am a product of an environment in which I believed doctors were supposed to actually do that\u2026 you know, make patients FEEL better.<\/p>\n

It\u2019s my fault for thinking that. I\u2019ve had years of experience to show me that\u2019s not what most doctors do.<\/p>\n

But I will tell you this doctor: I\u2019ve cheated death more times this past year than I can count, and I\u2019m going to keep on cheating it. One day, I\u2019m going to be healthy again, strong, vibrant, active and slender again\u2026 and I\u2019ll 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.<\/p>\n

What pisses me off the most about this is, when that day comes, I won\u2019t even be able to rub it in your face, because you\u2019ll just look at me and say, \u201cI told you you\u2019d feel better if you lost a little weight\u2026\u201d<\/p>\n

And it\u2019s that arrogance and blatant WRONGNESS that hurts people. You are a doctor. You\u2019re 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\u2019t have the support that I have, the love that have, the will to live that I have. They will give up.<\/p>\n

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.<\/p>\n

I\u2019ll leave you with something I heard once on a television show, \u201cI don\u2019t 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\u2019d 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\u2019re 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.\u201d<\/em><\/p>\n

Sincerely,
\nMichy\u2026 the survivor, and stuff.<\/p>\n","protected":false},"excerpt":{"rendered":"

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