What lies ahead? And what to do about it.

pidgeon92 wrote:I knew I was suffering from sleep apnea long before my first sleep study. I went to a nitwit ENT about 6 years ago who looked up my nose, prescribed steroids and left it at that. I didn't do anything about it again until last spring when for some reason my blood pressure went way up. I got a new doctor, and was prescribed Atenolol for my blood pressure and Paroxetine for some anxiety. Everything was good, but I was still pretty foggy every day. I didn't mention anything to my doctor until I read an article that said that good sleep is necessary to regulate blood pressure. When I saw him the next time, I asked him if he thought OSA could be the cause of my hypertension. His eyes got really big, and he wrote out the order for the sleep study before I left. I don't think it ever occurred to him that that could be the problem. I am so glad I finally got what I needed to get a decent night's sleep. I wish I had insisted on it years ago. I know my dad suffers from OSA, as well as a close friend of mine. Interestingly, they both function at a very high level (or so it seems). I always felt like a zombie.

There really is an old saying that wise old doctors often pass along to doctors in training: "If you want to know what wrong with the patient, you will need to ask . . . "

This story is just a classic. Dr. Parade would eat this stuff up!!

There is a Dr Gott who writes a medical advice column syndicated in many newspapers around the column. You might want to consider adding him to write to as well as to the Dr who writes for the Sunday Parade magazine.

When I saw him the next time, I asked him if he thought OSA could be the cause of my hypertension. His eyes got really big, and he wrote out the order for the sleep study before I left. I don't think it ever occurred to him that that could be the problem.

The American Academy of Family Physicians is a very well respected organization of docs that see all kinds of people every day.

The following is the complete''listing of their recommended Clinical Preventive Services, Including Screening and/or Counseling or Immunization.

1. Screening specified populations for abdominal aortic aneurysm
2. Counseling parents and patients more than 2 years old regarding accidental injury prevention
3. Screening and counseling specified populations regarding alcohol misuse
4. Screening specified population for asymptomatic bacteriuria
5. Screening for bacterial vaginosis in pregnant women (Note: Considered but not recommended)
6. Screening for bladder cancer in adults (Note: Considered but not recommended)
7. Counseling and screening women 40 years and older for breast cancer with mammography
8. Teaching or performing routine breast self-examination (Note: Considered but not recommended)
9. Referring specified female population for genetic counseling and evaluation for BRCA testing
10. Counseling parents of infants regarding breastfeeding
11. Screening adults and children for cardiac disease with electrocardiogram (ECG) (Note: Considered but not recommended)
12. Screening women for cervical cancer with Pap smear (Note: Guideline developers considered but did not recommend primary screening with human papillomavirus testing and new technologies)
13. Screening specified populations for chlamydia
14. Screening specified populations for colorectal cancer
15. Screening in women of childbearing potential for congenital rubella syndrome by history, serology, or vaccination
16. Counseling adults at risk for coronary heart disease regarding aspirin prophylaxis
17. Screening for coronary heart disease with electrocardiograph, exercise treadmill test, or electron-beam computerized tomography (Note: Considered but not recommended)
18. Providing fluoride supplementation to prevent dental caries in specified populations
19. Screening for depression in specified population
20. Screening specified populations for type 2 diabetes
21. Immunizing children and adults for diphtheria
22. Screening infants for dysplasia of the hip (Note: Considered but not recommended)
23. Screening for family violence and intimate partner violence (Note: Considered but not recommended)
24. Screening for genital herpes simplex virus infection (culture, serology) (Note: Considered but not recommended)
25. Screening for glaucoma (Note: Considered but not recommended)
26. Ordering ocular prophylaxis for gonococcal infection in neonates
27. Screening for gonorrhea in specified populations
28. Immunizing specified population for Haemophilus influenza type b disease
29. Behavioral dietary counseling for specified populations
30. Screening and counseling specified population regarding hearing difficulties
31. Screening newborns for hearing loss sensorineural (SNHL) (Note: Considered but not recommended)
32. Screening neonates for hemoglobinopathies, phenylketonuria (PKU), and thyroid function abnormalities
33. Immunizing specified populations for hepatitis A
34. Immunizing specified populations for hepatitis B
35. Screening specified populations for hepatitis B virus
36. Screening for hepatitis C virus (Note: Considered but not recommended)
37. Screening specified populations for human immunodeficiency virus (HIV) infection
38. Hormone replacement therapy in postmenopausal women (Note: Considered but not recommended)
39. Screening specified populations for hypertension
40. Immunizing identified populations for influenza
41. Screening for insulin dependent diabetes mellitus using immune marker screening (Note: Considered but not recommended)
42. Screening specified populations for iron deficiency anemia
43. Screening specified populations for lead poisoning
44. Screening specified populations for lipid disorders with fasting lipid profile or nonfasting total cholesterol and high-density lipoprotein (HDL) cholesterol screening
45. Screening for lung cancer with x-ray and/or sputum cytology (Note: Considered but not recommended)
46. Immunizing children for measles
47. Immunizing specified populations for measles, mumps, rubella
48. Immunizing children for mumps
49. Immunizing specific populations for meningococcal disease
50. Folic acid supplementation in specified female population to prevent neural tube defects
51. Screening and counseling for obesity
52. Screening for oral cancer (Note: Considered but not recommended)
53. Screening specified populations for osteoporosis
54. Counseling specified populations regarding calcium intake as prevention
55. Screening for ovarian cancer (Note: Considered but not recommended)
56. Screening for pancreatic cancer using abdominal palpation, ultrasound, or serological markers (Note: Considered but not recommended)
57. Screening for peripheral arterial disease (PAD) (Note: Considered but not recommended)
58. Immunizing children for pertussis
59. Screening neonates for phenylketonuria
60. Counseling children, adolescents, and adults regarding importance of physical activity
61. Immunizing specified populations for pneumococcal disease
62. Immunizing children for poliomyelitis
63. Screening for prostate cancer using prostate specific antigen (PSA) testing or digital rectal examination (DRE) (Note: Considered but not recommended)
64. Rh (D) blood typing and antibody testing for pregnant women
65. Immunizing children for rubella
66. Screening for idiopathic scoliosis in adolescents (Note: Considered but not recommended)
67. Counseling parents with children in the house regarding second hand smoke
68. Counseling adolescents and adults regarding prevention of sexually transmitted diseases
69. Screening for skin cancer (Note: Considered but not recommended)
70. Screening for speech and language delay in preschool children (Note: Considered but not recommended)
71. Screening specified populations for syphilis
72. Screening for testicular cancer (Note: Considered but not recommended)
73. Immunizing for tetanus
74. Screening for thyroid cancer using ultrasound (Note: Considered but not recommended)
75. Screening for thyroid disease (Note: Considered but not recommended)
76. Screening neonates for thyroid function abnormalities
77. Screening specified populations for tobacco use and providing smoking cessation counseling
78. Screening specified individuals for tuberculosis using the Mantoux test
79. Screening specified populations for vaginal cancer (Note: Considered but not recommended)
80. Immunizing specified populations for varicella
81. Screening specified populations for visual difficulties
82. Vitamin supplementation (A, C, E, beta-carotene; multivitamins with folic acid; or antioxidant combinations) for prevention of cancer or cardiovascular disease (Note: Considered but not recommended)

Doesn't look like we made the "A" list, folks. Similar sad findings from Doctors for Adults, i.e. Internal Medicine (American College of Physicians).
Tsk, tsk.

A few thoughts:

1. I ditto what DrB suggests – that whatever letters we write to whomever - including to Parade magazine – be our own stories. They are the most powerful.

2. I am still refining my letter to Dr. Rosenberg at Parade, and I am using “I statements” a lot – how my symptoms were dealt with, what I have learned from this list and other sources, what stereotype ideas I have run into talking with my friends about my diagnosis, and the wall of hesitation I run into when I suggest to friends or family that their own symptoms could warrant them asking their doctor’s about a sleep study, etc.

3. I think the point is not to blame ENT docs, Pulmonologists, GPs, RTs, or whomever may be giving us care for what they don't know. They do their best from their own knowledge base. The point is to expand the knowledge base of as many people as we can.

4. Looks like American Academy of Family Physicians could also use some letters.

Here are some comments I received from Doctors before my diagnosis of OSA. The first doctor I saw was convinced i had OSA due to my symptoms & hubby observing my gasping in my sleep. I asked him if i did not get treatment what would happen. He replied nothing will happen.After 2 years time I had to beg my ENT doc to order a sleep study. He didn't order one. I went back after 2 months for a follow up visit& told him I was so tired that I could not take it any more. He asked me how my marriage was & if I was depressed. I almost started to cry & assured him I was not depressed just tired. I finally convinced him & he wrote for the sleep study. The 1st doctor's ignorance on the fact that Untreatded OSA can wreck havoc on the body ( hypertension, heart disease , stroke, diabetes ) led me to suffer 2 more years than I needed to be that is distressing. Women espscially are thought to be depressed instead of diagnosing sleep apnea they are medicated with anti depressants. The medical community needs to be enlightened on OSA & it's effects on the body if left untreated. We must all spread the word.

Hello gulfpearl

I would encourage you to send this to Dr. Rosenberg at Parade magazine and tell him how important it is to get people and doctors informed. His address is a few posts back.

drbandage:

I think it is a big challenge and very worthy cause to raise the general awareness of the medical profession and the public about the prevalence and severity of osa. Beyond that, the idea needs to be erased that only overweight people with necks 18 inches or larger have osa.

I belong in a subgroup of slim, even athletic, individuals with osa. The doctors that missed a proper diagnosis of my condition for six years were shocked to learn that many slim people have osa.

rooster

If the numbers are as high as i have seen and insurance companies will blindly pay $$$$ for machines, then it is serious stuff.

My prmary Doc seems almost clueless about this. The Doc has said that the sleep clinic will handle things... well we know how that goes.

My Doc seems to think that the use of the machine will solve everything. I think that the next time I visit, I may take some medical articles with me.

rooster wrote:drbandage:

I think it is a big challenge and very worthy cause to raise the general awareness of the medical profession and the public about the prevalence and severity of osa. Beyond that, the idea needs to be erased that only overweight people with necks 18 inches or larger have osa.

I belong in a subgroup of slim, even athletic, individuals with osa. The doctors that missed a proper diagnosis of my condition for six years were shocked to learn that many slim people have osa.

rooster

Rooster, I am in your hen house with that. I, too, was not one of the "usual suspects". Only sleepy, sleepy, sleepy. Oh, thunderous morning headaches, too, but that only meant that we had to rule out a brain tumor. Got the MRI, no tumor, no problem.
"You need to get more sleep, but let's celebrate, you don't have cancer".

Anonymous wrote:

rooster wrote:drbandage:

I think it is a big challenge and very worthy cause to raise the general awareness of the medical profession and the public about the prevalence and severity of osa. Beyond that, the idea needs to be erased that only overweight people with necks 18 inches or larger have osa.

I belong in a subgroup of slim, even athletic, individuals with osa. The doctors that missed a proper diagnosis of my condition for six years were shocked to learn that many slim people have osa.

rooster

Rooster, I am in your hen house with that. I, too, was not one of the "usual suspects". Only sleepy, sleepy, sleepy. Oh, thunderous morning headaches, too, but that only meant that we had to rule out a brain tumor. Got the MRI, no tumor, no problem.
"You need to get more sleep, but let's celebrate, you don't have cancer".

And Rooster, take five and fire off a quickie account of your sad story to Parade, above. Doesn't need many details, just the facts.

This thread has been very interesting, to say the least, to me. If you like the topic, here's another thread worth checking out:

New Version of Free Money, Come and Get It

Thanks,
drB

I just wanted to stop in and complement everybody on the positive threads of change that you are weaving on this message board---starting with this thread, the first of a beautiful tapestry currently being woven by many others here! I am so impressed, and so moved that I finally have a closing signature line.

I consider it a public service announcement of sorts! Others will find our important threads of change interspersed throughout this message board as they read the signature line in my posts. I hope we can keep the current of these two threads (the other thread) surfacing to the top again and again: The Continuation of This Thread Can Be Found Here

Congratulations to everyone here who is helping to weave such a very beautiful tapestry of threads on this message board! Please keep up the good work in the current thread shown above. I also refer to that thread as "The Challenge" in my own signature line below. This initial thread is what I will always think of as "Our Hope" and that is reflected in my signature line below as well. This thread is what I Hope to be a very historic thread some day!

Last week on this tread, we talked about how to get more awareness in the media by getting sleep apnea featured on TV (Oprah, Grey’s Anatomy, etc.)

In this week’s Sunday paper magazine section Parade – their featured article, How TV Docs Can Keep You Well was written as if they had been reading this thread!! (I used to never read this section of the Sunday paper – now two weeks in a row it has had relevant information!)

On the cover is Dr. McSteamy from Grey’s Anatomy and inside, the lead article talks about how shows like G’s A, House, ER, etc. can raise the awareness about certain diseases and conditions. They sited programs that had significantly increased doctor visits and preventative testing after the shows had been aired (Guiding Light – breast cancer, George Lopez – kidney disease, Medium –diabetes etc.)

AND…they said there is a project – Hollywood, Health & Society - that provides the entertainment industry with accurate information for health story lines.

I encourage you to go check it out. It is a project of the Norman Lear Center.
http://www.learcenter.org/html/projects/?cm=hhs

Hollywood, Health & Society
USC Annenberg Norman Lear Center
8383 Wilshire Boulevard, Suite 650
Beverly Hills, CA 90211

If you go to http://blog.learcenter.org/ and scroll down a bit – in the center of the page are two links to Washington Post and Boston Globe articles talking about the efforts to get more medical accuracy on TV programs.

All kinds of leads and info to generate ideas for the activists amongst us!

betty303 wrote:Last week on this tread, we talked about how to get more awareness in the media by getting sleep apnea featured on TV (Oprah, Grey’s Anatomy, etc.)

In this week’s Sunday paper magazine section Parade – their featured article, How TV Docs Can Keep You Well was written as if they had been reading this thread!! (I used to never read this section of the Sunday paper – now two weeks in a row it has had relevant information!)

On the cover is Dr. McSteamy from Grey’s Anatomy and inside, the lead article talks about how shows like G’s A, House, ER, etc. can raise the awareness about certain diseases and conditions. They sited programs that had significantly increased doctor visits and preventative testing after the shows had been aired (Guiding Light – breast cancer, George Lopez – kidney disease, Medium –diabetes etc.)

AND…they said there is a project – Hollywood, Health & Society - that provides the entertainment industry with accurate information for health story lines.

I encourage you to go check it out. It is a project of the Norman Lear Center.
http://www.learcenter.org/html/projects/?cm=hhs

Hollywood, Health & Society
USC Annenberg Norman Lear Center
8383 Wilshire Boulevard, Suite 650
Beverly Hills, CA 90211

If you go to http://blog.learcenter.org/ and scroll down a bit – in the center of the page are two links to Washington Post and Boston Globe articles talking about the efforts to get more medical accuracy on TV programs.

All kinds of leads and info to generate ideas for the activists amongst us!

Betty303 -

You are a wonderful resource for this kind of stuff!! Thanks so much for leading by example. I think we could/should start creating a thread that has a compilation of all the various contact "opportunities", so that any time an important issue relating to OSA needs a good nudge, we don't to hunt down these vital links to the people that need to hear about it. We could just keep adding to it, and hopefully post it one day in Collective Wisdom.

Your efforts epitomize the "chopping at the root" approach. I am so impressed.

Now, you have lead the horses to water, but will they drink? I'm betting there are some thirsty thoroughbreds out there (and at least one thirsty Unicorn '').

I checked out the link Betty provided to the Norman Lear Center. I entered Sleep Apnea in their Search box and nothing. So I went to the "tipsheet" link for writers and producers to obtain information on medical storylines. It brings you to a list of medical issues, concerns, etc from the CDC. Not one single mention of a sleep disorder of any kind! So, I shot an email to both the CDC and the Norman Lear Center asking them to include OSA info in their listings and I also made mention of National Sleep Awareness Week and Sleep Apnea Awareness Day.

On one other item of note: On the SleepFoundation website where so much info is available, there are many articles regarding children and teens and sleep. They have an Adopt A School program where you can invite a sleep specialist into a school to talk to kids about the importance of getting good sleep and the potential harm that can come from sleep depravation. I think this all ties in nicely with the upcoming Sleep Awareness Week and I plan on contacting my boys schools next week to see if they are interested. Sleep education has to begin somewhere!

Mary