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repost of Jeff's response to Gerry, a patient who was at his wit's end with the medical system:

"If the doc gave Gerry the diagnosis, the doc did his job. In my opinion, few sleep docs have the time, the patience, or the emotional makeup to be able to show much empathy. Many of them are like cops that way. They love people, but they have a job to do, and it is more important they do their job well than that we like the way they do their job. Once they've done their part in saving one life, they move onto to the next life to save--kind of like firemen. Sleep specialists have a lot of fires to put out these days.

Few people make it through the first few nights with the mask on all night. It takes baby steps. Many wear it for a few hours the first night, wear it for more hours the next night, until eventually they can make it all night with the mask.

The person who delivers equipment is the equipment delivery person, rarely an actual RT. They get beat up on verbally. So I try to be nice to them. And I don't expect them to hold my hand through the whole process. We've got Sleepguide and other communities for that, to do that for each other.

There are ways to make the therapy work. It takes some time and effort, but it can be done in virtually every instance, with a few extremely rare exceptions.

Here is my "tough love" statement: Giving up because we don't feel like we were treated well is counter-productive. I don't care if the pharmacist hands me my pills nicely or throws the bag at me from across the store -- if those pills are going to save my life, I'm going to take them. I don't say to myslef "I'll show them--I just won't take those pills!" No, I take the pills anyway, and live.

That CPAP machine may be the pill that will save Gerry's life if he has 71 events an hour. I understand discouragement. I've been there. I understand depression. Been in that ballpark, too. Sometimes it takes a little tough love for a friend to say: "What? Are you out of your mind? JUST USE THE MACHINE! I love you too much to let you turn your back on the one piece of equipment that may very well give you your life back!"

That would be the kind of tough love I would give Gerry if he was my pal. But I'm not sure tough love always works so well when it comes from strangers. So I guess my post simply is what it is.

If we can precisely define exactly what our problem is using the machine, though, we then are halfway there to finding the solution to each obstacle one at a time until we get the larger problem solved. Sleeping and breathing are worth taking a methodical appoach with, since improving them can have a profound effect on a person's quality of life. CPAP can save lives, but only if it is used.

We have to generate our own success. No doc or delivery person is going to do that for us. Yes, they should be more helpful. But the satisfaction comes from outliving them. :-)

jeff"

Views: 93

Replies to This Discussion

I know you can't see me, but I am giving you a standing ovation. Bravo!
I too have sleep apnea. I cant afford the machine, the supplies or the doctors visits. Any help out there for people like me? I am new to this forum. I just dont what to do.
Cynthia, do a google search on A.W.A.K.E. It is an organization to help people acclimate to CPAP therapy and they are pretty good at suggestions on how to get assistance in getting tested and treated for OSA plus help w/finding and purchasing low cost, sometimes even free, testing and equipment.

Considering your health and quality of life, perhaps even the LENGTH of your life, depends on treating OSA, you might also want to re-examine your priorities as to just how much you CAN afford for OSA therapy. You may find you can afford a little more than you thought. Remember, the Good Lord helps those who help themselves so be sure to explore all your options.
I like this site but I can't believe this post. No one has to take manure from ANYONE!

Don't take garbage from a doctor, pharmacist or anyone else......

There are lots of good medical providers out there that aren't stuck on themselves. Good medical providers believe in quality not quantity!

The analogy of comparing medical providers to cops is ridiculous! Everyone is responsible for their own health and life but that doesn't mean you have to accept poopie, rude, unethical, unprofessional service from anyone!

If you're treated inappropriately, don't take it! Find a new pharmacist......find a new doctor! You'll be much happier and much healthier! It's not always easy, but well worth it!
I TOTALLY AGREE!!!!!!!!!!!!! Mistreatment by medical professionals is totally unacceptable. If they're too busy to be kind, they need to find a way to be LESS busy and remember why they went into the medical field in the first place. It's called "medical CARE" for a reason !!!! If they're in it for the $$ only, they aren't worth anyone's time...........certainly not mine.

Susan McCord

Jerri Mathis said:
I like this site but I can't believe this post. No one has to take manure from ANYONE!

Don't take garbage from a doctor, pharmacist or anyone else......

There are lots of good medical providers out there that aren't stuck on themselves. Good medical providers believe in quality not quantity!

The analogy of comparing medical providers to cops is ridiculous! Everyone is responsible for their own health and life but that doesn't mean you have to accept poopie, rude, unethical, unprofessional service from anyone!

If you're treated inappropriately, don't take it! Find a new pharmacist......find a new doctor! You'll be much happier and much healthier! It's not always easy, but well worth it!
Thanks Susan......You go girl!
You are absolutely right in writing : No one has to take manure from anyone. Now the question is WHY that healthcare provider is giving someone sh**. An example : One of my friends has NIDDM,Polycystic ovarian syndrome taking metformin and some other meds and her doc always stresses on getting her weight in check etc. She misses her appts with her /him citing " being busy at work" etc etc. Now here comes the ripple effect and that is after missing /not showing up at her doc's office she then delays making another appt ( scared that he will yell at her ) and as a result totally ignores ( thinking that nothing catastrophic is gonna happen so another excuse of not goin to the doc. ). Now these kind of situations do push / force health care provider to show disinterest ( which at times comes out as Indifferent , ignorant attitude ).

So May be that healthcare provider is also thinking on same lines >> No one has to take Manure from Anyone.;-). Ofcourse one has to think and then proceed. And yeah sometimes you just get unlucky ( when you get the nastiest of health care provider ...;-)
Rall..
I can certainly understand a healthcare provider's getting annoyed/frustrated with a patient who ignores treatment recs. I used to be one of those providers. But what I KNOW is that mistreating or being judgmental with a patient will NOT motivate them to be more compliant!

There's a reason for all the years of training we go through which SHOULD translate into a better level of insight into human nature/behavior in the face of fear or anxiety. I agree totally that no patient has to accept unkind treatment from ANY caregiver. Now that I'm regularly on the opposite side of the desk, as a patient, I feel even more strongly about it.

I could have two completely different, and differing, conversations on this issue, depending on which hat I'm wearing!!!

I fired the neurologist who ordered my sleep study 'cause she was treating her practice like some kind of cattle call. She's supposed to be good, but her style sure didn't work for me. Patients need to take responsibility for their own healthcare. Hopefully that responsibility extends to working toward compliance with treatment recs. However, sometimes people use that "responsibility" or personal power, if you will, to avoid and ignore those recs.

Whatta 'ya gonna do? People have a right to be foolish just as much as they have the right to fight for recovery.......my opinion only.

Susan McCord :-)
It was so timely that I found this thread today. Last night I did not use my equipment because I was so angry at the health care providers that had let me down this week. On Tuesday, I spent 4 hours in my sleep doctor's office and left empty handed. Ultimately, I did see my doctor for a few moments, because the staff had lost my records. Eventually some of them were found. (No help with my mask, no reading of my machine, and was referred back to my equipment provider.) On Wednesday I spent three hours at my equipment provider's headquarters. They only had one mask in stock, and it was very comfortable, but it smelled like mildew to me. Since using my machine (fourth week now), I have developed bronchitis and a hacking productive cough that has not responded to Antibiotics. I was afraid to take the mask that smelled like mildew. So I asked them to please order a new one and give it to me in the original box. They were annoyed, but agreed to meet with me again next week. They also did not have the equipment to "read" the information in my machine. The doctor never sent the prescription for this piece. It is called RES SCAN. My machine is a RES MED ADAPT SV machine for Complex Sleep Apnea. It is supposed to be monitored regularly to see if the settings need to be adjusted, but so far neither the doctor's office or the equipment supplier has read the machine.
Wit's end indeed!
I really wanted to throw it away yesterday. But, you guys have reminded me that my health is my own responsibility.

My brain function, and heart and lungs should be taken care of by this machine when all is working right. Is this true? Please Help.

Jodi

susan mccord said:
I can certainly understand a healthcare provider's getting annoyed/frustrated with a patient who ignores treatment recs. I used to be one of those providers. But what I KNOW is that mistreating or being judgmental with a patient will NOT motivate them to be more compliant!

There's a reason for all the years of training we go through which SHOULD translate into a better level of insight into human nature/behavior in the face of fear or anxiety. I agree totally that no patient has to accept unkind treatment from ANY caregiver. Now that I'm regularly on the opposite side of the desk, as a patient, I feel even more strongly about it.

I could have two completely different, and differing, conversations on this issue, depending on which hat I'm wearing!!!

I fired the neurologist who ordered my sleep study 'cause she was treating her practice like some kind of cattle call. She's supposed to be good, but her style sure didn't work for me. Patients need to take responsibility for their own healthcare. Hopefully that responsibility extends to working toward compliance with treatment recs. However, sometimes people use that "responsibility" or personal power, if you will, to avoid and ignore those recs.

Whatta 'ya gonna do? People have a right to be foolish just as much as they have the right to fight for recovery.......my opinion only.

Susan McCord :-)
Jodi, do you have the Resmed Adapt SV Enhanced or just the Resmed Adapt SV? I'm not sure of the data capabilities of the Adapt SV but the Adapt SV Enhanced "is" fully data capable. Read thru your Users Manual that came w/it. See if there is any mention of an "advanced" or "detailed" patient menu. There are some of us here who can probably tell you how to access your data IF if is the Adapt SV Enhanced w/o needing the unhelpful goons you've been subjected to.

The only person I know using the Adapt SV Enchanced is WhiteBeard in the apneasupport.com forum. He is an CSA/OSA patient and a great guy, always pleased to help others.
Judy,
Thanks so much for your kind reply. My machine is the VPAP Adapt SV. No mention of "Enhanced". I just reviewed the User Guide and it only mentions the ResLink as a device that records data and should be brought to doctor's visits.


Judy said:
Jodi, do you have the Resmed Adapt SV Enhanced or just the Resmed Adapt SV? I'm not sure of the data capabilities of the Adapt SV but the Adapt SV Enhanced "is" fully data capable. Read thru your Users Manual that came w/it. See if there is any mention of an "advanced" or "detailed" patient menu. There are some of us here who can probably tell you how to access your data IF if is the Adapt SV Enhanced w/o needing the unhelpful goons you've been subjected to.

The only person I know using the Adapt SV Enchanced is WhiteBeard in the apneasupport.com forum. He is an CSA/OSA patient and a great guy, always pleased to help others.
ME TOO!!! Hi, Jeff.................:-)

McCord

Rock Hinkle said:
I know you can't see me, but I am giving you a standing ovation. Bravo!

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