Still sleeping so much/unhelpful docs

[lovey]

A couple of weeks ago I wrote about my problems with even with my ff mask/bipap, my oxygen was going down to mostly the low 80's at night. I've had an "emergency" sleep study, brain ct-scan, etc., and ER visit, etc. Problem is now, I am back to sleeping 12-14 hours a day. I am falling asleep behind the wheel. This is despite being on 400 mg. of Provigil a day!! It has made working nearly impossible (some days are better than others).

Despite having an "emergency" sleep study 10 days ago, nobody has done anything. My primary doctor is waiting for the sleep doctor. I tried for a month before to get help from the sleep doc, so I don't have faith that they will do anything in a timely matter. The sleep study should be interpreted by now. I have called the sleep lab/hospital and asked for the newest sleep study, plus my old sleep studies. Of course, it will be a few days until records get them to me. I went to the cardiologist's office and got the results of my echocardiogram and chemical stress test from July...they were like, didn't the doctor discuss the results with you? I said he said, "looks good".. That's all the info I ever get from my doctors. I have to do all the hunting for details myself. Half the time, I am not even sent a note with the test results, even if they are negative.

I made an appointment with the cardiologist a few days ago. I couldn't see my cardiologist until Jan., but they set me up with his partner in three weeks. Last time I saw his partner, I cried my eyes out of his attitude -- everything is caused by obesity, I am doing everything wrong, i.e. when I told him I was exercising 4-5 times a week, he said I should be exercising 6 days a week. Why can't I see my own cardiologist in a timely manner????? He's a cool guy I adore. It's not like this is not a serious problem. Why do I even have to wait 3 weeks to see the jerk of a cardiologist with an urgent problem?? The same thing happened with my sleep doc--I had to wait 3 weeks just to see the nurse practicioner, it would have been Jan. to wait for my sleep doc.

I feel invisible. I have to scream to get basic care. None of them seem to care because they can't see the problem in front of them, as it only occurs in my sleep. What do I have to do to have these doctors do something? It's going on 2 months now I have been sleeping 12-16 hours a day. It's been 2 weeks since the overnight pulse-oximetry showed over 2 hours below 88% saturation (even with the bipap on). I didn't receive any news or calls this week from any medical provider, so I doubt anything is going to be done soon.

Any suggestions, other than to go to their offices naked, to prove that I'm not invisible???? Thanks, Lovey

[ozij]

How awfully frustrating that is!
I wish I could give you some good practical advice, lovey - all I can do it is tell you you're not invisible here, and I hope you will get the treatment you need soon.

O.

[Lord Darth Beavis]

Lovey, your problem demonstrates a major problem in our healthcare system. Doctors prejudge their patients, and don't help or listen to them. Many times, the doctor is in some way prejudiced against the full figured, and lets that prejudice overcome his professional duties.

Last time I had a similar problem, I found a new doctor. Of course, I wouldn't trade my doctor for anything. She listens, talks to me, and generally makes me feel like I am a valuable human being. Scary, huh?

My suggestion would be to contact your state board of medicine and lodge a complaint, or seek out new docs.

[Slinky]

My sympathies, Lovey. There just don't seem to be many "good" doctors out there. You might try scheduling an appointment w/YOUR cardiologist regardless how far into the future that may be granted and when you DO finally see him pour your heart out to him, it may well be that he will instruct his desk dragons to schedule you immediate contact or appointments w/him in the future once he realizes the situation. It is hard to maintain any respect or faith in the medical system today. I have to keep reminding myself that there is the other side of the story, the doctors' side, when I need help and can't get it from the involved specialist for weeks or months. Thank God for my family doctor! At least HE is STILL a REAL doctor and cares about and has TIME to see his patients in a TIMELY manner as needed.

[lovey]

Thanks. I think I will take your advice about holding out for the good cardiologist. Since this is a mystery why I am destating at night, I need someone I can have a conversation with to try to figure this out. The jerk of cardiologist is incapable of this. Thanks for the insight that I need to hold out.

I had a "real" primary doctor until a year ago. This new one sucks in so many ways. His office sucks even worse in keeping me from getting care. They act like I am a pain in the ass. I want to take them and scream at them that maybe some people have urgent and serious medical conditions. They seem to not care one bit whether you actually get medical care.

I did get emotional, but did not cry, with the both the sleep doc and the primary doctor a few weeks ago. I ended up in the ER with an anxiety attack and chest pains, because nobody for two days would even call me back, despite my saying it was urgent. I contacted the sleep doc's office and staff repeatedly for a month with no response. The only thing they did is to let me see the nurse practicioner in three weeks. It would of been Jan. again if I waited for my sleep doctor. I told both the primary doctor and the sleep nurse practicioner what happened, and how it made me so upset I ended up in the ER. Neither said anything. Neither offered an apology or said they would try to correct the situation.

I was talking to my counselor later in the week I saw them, and he said that maybe they didn't say anything or apologize because they know they have breached the "duty of care" medical laws. That might have been so, but it doesn't explain this week...if they did break "duty of care" laws, shouldn't they be trying extra hard now to not be breaking them? I can pursue this "duty of care" area--but with limited doctors locally, it may doom my future care.

Obviously, there is not an easy solution to this. Thanks for your advice. Any more? Lovey

[plr66]

I may have missed this in your posts, Lovey, but have you taken your Oximeter report to your PCP with the desat <90% circled in red or something? I admit that I am incredibly fortunate to have recently found a wonderful PCP. He actually called me personally at 8:00am the morning after getting my results (about the same as your data, I think) and spent about 20 minutes with me, instructing me that he was having an O2 machine delivered to my house immediately after work, and that I was to be there! He then got me in for a sleep study within the next 5 days. Do you have O2 at this point?

[lovey]

No, I don't have 02. sleep doc didn't "want to go down that road". The respiratory therapist at the local DME, who spent a long time going over the study, thought I should have it and he and I tried to get everyone to order it. But everyone defers to the sleep doc's opinion.

When I finally did see my primary, he tried not to try to figure it out, but I showed him that the oximetry tests were easy to understand. Basically, I was fine for two hours. Then I went haywire for over 3 hours. And then I was fine again for 4 hours. The sleep doc thinks it is the sleep apnea only. Everyone else there is an underlying condition causing me to destat every night.

The sleep doc had the "emergency" sleep study be a titration study, based on his assumption that it is the sleep apnea. The sleep lab had to follow doctor's orders, including starting my pressure out at 6/2, when my bipap pressure is 20/14. So, gee I couldn't sleep because I couldn't breathe!! Then, they made me sleep on my back for 2 hours. I have trained myself in the last 2 1/2 years with OSA to never sleep on my back, so that is 2 hours I didn't sleep either. There is a slight chance this sleep study will tell any useful information at all, but everyone is waiting for the results to do anything, I think. They should have done a diagnostic sleep study, with me at my usual pressures, to see how bad I destat. But since they didn't, I am no closer to knowing what is going on.

I've lost faith in the sleep doc, but even to see someone else, it is considered a second opinion by my insurance, and the sleep doc has to send an order to the new sleep doc. I have found another sleep doc, but the old doc hasn't replied about the second opinion.

I don't know how these docs can sleep at night. How can they not care what is going on with me? My primary had 2 small reminders this week come across his desk...two test results. Maybe, if he gave a damn, he could have picked up a phone to check how I was doing. And, there is a shortage of family practice docs in our area, and most other people have trouble with their primary docs too. And the good docs are so overbooked, you can't get care in a timely manner.

There are some "serious" stats on the oximetry report, such as I was at 85% for 10 minutes straight. I had 40 destats of over a drop of 10%. The DME and docs can't put a oximeter with alarm on, because it would go off around 40 times a night. I know how serious this is, even in I can't have an alarm because of how serious it is. I ended up in the ER with chest pains one of the first nights, which was probably anxiety. I have just had to keep faith that I will wake up every morning since then.

Last thing, it was the guy at the sleep lab who I called, who was able to get me in for the "emergency" sleep study, not my sleep doctor. I had to even instigate that!!! The sleep doc was fine with waiting 3-4 weeks for a sleep study if needed, but of course, I didn't need 02 during the wait...ugghh.

Frustrated!!! Lovey .

[kteague]

Lovey, so sorry to hear you are still going thru this. In your circumstance with trouble getting to your docs and getting information, it would be to your advantage to get copies of every test you've had done and maintain a file of your own. In many cases, the amount of detail doctors give a patient is limited to the direct questions the patients ask. Believe it or not, some people are ok with trusting the doctors and not knowing any medical detail for themselves.

With all your tests in front of you, examine them for anything you don't understand and start a list of specific questions. Once you jot everything down, go back and whittle it down and write only the necessary words for you to remember what to ask. Any doctor would moan if a patient shows up with a full page of handwriting they expect to read aloud to the doctor. (For instance: Low oxygen at night - Cause? Plan of action?) If they answer with a non-answer, repeat the question until you fully understand.

I agree with going ahead and making that appt with the cardiologist you prefer. I think I'd also keep the appt with the other one just because it will put an extra eye on you in the interim and maybe you'll get some answers sooner. That is if you don't feel totally stressed out by seeing that doctor.

It would not hurt for you to write a brief letter to your doctors, something to the effect of: Based on the results of my overnite oximetry, I am concerned that waiting until a regularly scheduled appointment to discuss my low oxygen levels could place me in a position of continued harm and possibly even danger to my health. Please contact me with the next planned step to determine the cause and appropriate treatment of my low oxygen levels at night. If I were a doctor, I wouldn't want to ignore a patient with that letter in the records.

Until then, please don't take chances on driving. When I first found this site in early 2006, a forum member was really adamant that I not drive after I related falling asleep at the wheel just a block from home. He later told me had lost his wife when she fell asleep at the wheel just a short distance from home. The risk is just too great until you resolve those things making you sleepy.

Sure hope you get some response from your docs. Keep us posted.

Kathy

[lovey]

I have been gathering all of my medical tests this week, but the only one that is ready is the cardiologist's. The tests from July said that I have mild artery disease and a slightly enlarged heart. This is not news to me, I had this for 5 years, but is another reason the docs should be concerned.

It is a good idea to start making statements like yours, that could get them in trouble legally or increase their likelihood of being sued. One thing doctors do care about is money. Thanks for the idea.

I was thinking this past hour, is I need a doctor like Dr. House!! Then I thought well, it has got to be a speciality for diagnostic medicine. I'm going to look if there is a diagnostic medicine clinic here in Michigan.
Thanks, Lovey

[BeanMeScot]

Lady I work with talked about how she used to be covered under Kaiser. She said their entire job seemed to be NOT to treat anything. She finally got frustrated and she said she started refusing to call for an appt since they would just pooh pooh whatever problem she was having and refuse to see her. She said she started going over there. They would ask if she had an appt and she would say no and when they would say she couldn't be seen, she would start screaming about how much she was paying for healthcare and how shoddy they were, etc. She was then seen immediately.

The squeaky wheel gets the grease. Be a squeaky wheel.

[Slinky]

Ha! A doctor that looked as grubby as House and w/that disposition??? I could care less how brilliant the SOB would be I'd be cutting my nose off to spite my face and firing him before he got hired!!!

[lovey]

Well, I'd like a doc with some personality and a brain, not like my current primary doc. I don't care what he looks like, as long as he would do something!!! Anyways, I did look up the University of Michigan in Ann Arbor's website, and they do have a research sleep disorders clinic there, so on Monday I am going to stop by my primary docs and insist he refer me there. It's about 4 hours drive away, but there is also an Amtrak train from my town to there that takes around 3 1/2 hours.

I have cried uncontrollably, gotten angry (but even with my soft voice I am not loud), and written angry letters to no avail. I tell ya, the only way I am going to get any attention is to go in and get naked in the waiting room

By the way, I have seriously curtialed my driving, as a poster mentioned. I don't want to cause harm to myself or others. My quality of life is in the crapper right now, and not driving so much is making it worse.

Thanks, Lovey

[echo]

At least you haven't lost your sense of humor

Gooooood luck. For sure you have the committment, I hope you find a doc that will be just a committed. Just be firm with your primary doc!

[Slinky]

Good luck, Lovey!!!! I'm two hours from U of M in Ann Arbor. BirdShell is probably about an hour from U of M. I'm taking part in two COPD research trials at U of M right now and have to go down there every 3 months.

[lovey]

I had a thought -- if I get in trouble with the law for "indecent exposure" in the doc's office in my naked attempt to get treatment, I could blame it on that is was a related and untreated parasomnia, so it was the doc's fault I got naked!