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What to ask about during initial meeting? - mesenteria - 09-27-2018
My aged father is meeting with a therapist/supplier outfit tomorrow morning to be given and fitted for PAP therapy. All he has had so far is the overnight in-home evaluation with finger probe and cannula. He says he was told he does have hypopnea/apnea of some kind, but I know no more than that. He has asked that I accompany him because he expects me to be able to ask the 'right' questions. If only that were true!!
I know enough about my own case and its treatment to be dangerous. I haven't been able to see what data was extracted by these people, nor do I know how they have interpreted it. I don't know if they only offer a limited range of machines or of what manufacture.
For those of you with some longer teeth and experience here, if you were to accompany him tomorrow, what questions would you ask on his behalf, or what other expectations would you have for him by the time he left with something in a bag?
Thanks in advance to all who offer their input.
RE: What to ask about during initial meeting? - silentsnore - 09-27-2018
I don't know much about BC health coverage, but I would insist on getting an APAP machine, preferably ResMed AirSense 10 Auto. Heated tube, of course. Difficult to make any suggestion for mask... hopefully the home care provider will be able to make sensible recommendation.
The therapist should interview your dad, to gather relevant information. And, no worries, there will be not much data from that home study. It's only used as a screening tool with simple yes or no outcome. It cannot be used to prescribe appropriate therapy.
RE: What to ask about during initial meeting? - sheepless - 09-27-2018
judging by your participation on this forum I'd say you're selling yourself short. you have accumulated a wealth of info from your own experience and what you read here. you've offered good info and advice to others. in addition you'll know what to ask by what they say or don't say. start with the items you said in your post #1 you don't know. get copies of the study, Rx, doctor & RT notes, etc. not sure how it works in BC but be a second set of eyes with respect to contracts, prices, machine hours, machine data capability, mask fit, hose type, compliance... you know, all the stuff we all ask about here.
RE: What to ask about during initial meeting? - Sleeprider - 09-27-2018
I would be looking at the data for apnea type and evidence of flow limitation and oxygen desaturation. The most likely outcome regardless of what you know is that he will be issues some kind of CPAP, and the only one I'd be interested in is an Airsense 10 Autoset, where you can expect a good responsive auto-cpap to address events, and up to 3-cm EPR to help with hypopnea and flow limits. Getting a machine without data would be worthless in terms of evaluating his therapy and helping to optimize it. Getting a responsive auto CPAP is the best chance to ensure he succeeds, and the EPR is the only CPAP exhale relief that has a therapeutic value.
If you are asked to go along, then go with only one thing in mind...get the Autoset.
RE: What to ask about during initial meeting? - Gideon - 09-27-2018
1. Review the New to Apnea? Helpful tips to ensure success Wiki article. Think from your dads perspective.
2. Review the Mask Primer.
3. Try masks on with your NEW Autoset 10, under pressure, lying down in a normal sleeping position
4. Verify that you have a NEW ResMed Airsense 10 Autoset (ONLY machine you can accept)attitude. IMHO This is THE BEST starter CPAP that you can get.
5. Verify total Run Hours, (too many cases of used machines being passed off as "new to YOU")
A Mask Trial Strategy
First, even a mouth breather may be able to use ANY style of mask, even the simplest, most unobtrusive, Nasal Pillow. See the Mouth Breathing section to see what to do.
Try masks from the most unobtrusive to the biggest bulkiest of masks. This would typically be starting with Nasal Pillows, Nasal Mask, Hybrid Masks, then finally the Full Face Mask. The smaller masks that you start with leave you with less mask on your face and more visibility.
Finally, as I have said before, you have to try masks on, under pressure, and preferably lying down in sleeping position.
Also check for a Climateline heated hose, I find it much more comfortable than the standard hose.
RE: What to ask about during initial meeting? - mesenteria - 09-28-2018
First, thanks so much for all your advice; I really appreciate your taking the time to respond.
I am happy to report that the meeting went gratifyingly well. The therapist was patient, knowledgeable, and took a great deal of time to make sure my dad knew what he could expect from the machine and what he should expect about himself and its use. She already had an AS10 Autoset For Her on her desk because it is the more responsive or sensitive, and she knew my dad has COPD. She took his health history, and then set about to explain everything and finally to fit him for a mask. He chose the Respironics nose pillow with side-tubes and head-top swivel fitting based on his say-so. She left him wearing it for about five minutes and encouraged him to discuss some issues while wearing it. He managed to talk against the nasal pressure, which she said few people can do.
I will go to his place this afternoon and drill a 1.5" hole in the back of his night table top drawer. Wire goes through that, and the machine into the drawer. Of course I will call him tomorrow to ask how his first night went. He doesn't have a chin strap, no cervical collar (yet?), and we're quite certain he'll experience the mouth opening problem nasal mask users experience at times. I explained that his first night won't be a salutary experience....probably.
Thanks, again. I know what I went through, but with my own different DME. That was a good experience in my view, but I had read so much about terrible experiences that I feared he might not have a good meeting with this unknown quantity. Happily, it was very good.
RE: What to ask about during initial meeting? - OpalRose - 09-28-2018
mesenteria,
So glad your dad had a good experience. There are some good DME’s out there, believe it or not. And your dad is lucky to have your expertise to lean on. Looking forward to hearing about his experience with the machine and mask.
RE: What to ask about during initial meeting? - Sleeprider - 09-28-2018
(09-28-2018, 04:15 PM)mesenteria Wrote: First, thanks so much for all your advice; I really appreciate your taking the time to respond.
I am happy to report that the meeting went gratifyingly well. The therapist was patient, knowledgeable, and took a great deal of time to make sure my dad knew what he could expect from the machine and what he should expect about himself and its use. She already had an AS10 Autoset For Her on her desk because it is the more responsive or sensitive, and she knew my dad has COPD. She took his health history, and then set about to explain everything and finally to fit him for a mask. He chose the Respironics nose pillow with side-tubes and head-top swivel fitting based on his say-so. She left him wearing it for about five minutes and encouraged him to discuss some issues while wearing it. He managed to talk against the nasal pressure, which she said few people can do.
I will go to his place this afternoon and drill a 1.5" hole in the back of his night table top drawer. Wire goes through that, and the machine into the drawer. Of course I will call him tomorrow to ask how his first night went. He doesn't have a chin strap, no cervical collar (yet?), and we're quite certain he'll experience the mouth opening problem nasal mask users experience at times. I explained that his first night won't be a salutary experience....probably.
Thanks, again. I know what I went through, but with my own different DME. That was a good experience in my view, but I had read so much about terrible experiences that I feared he might not have a good meeting with this unknown quantity. Happily, it was very good.
Great minds think alike. I use a 2-inch hole through the back of the drawer stand and route both the power and tube through the rear. Makes a cleaner install and the hose doesn't stick out the front. I suspend the hose from the headboard.
With COPD, the EPR feature is going to be an important for good results. Let us know what the settings are, and if EPR was not considered, just assume we will be adding up to 3-cm of exhale pressure relief and potentially increasing the minimum pressure to compensate. The Airsense !0 Autoset for her is the best possible machine in that series. Being able to talk on nasal therapy is a mark of a Jedi. Get a straw for his drinking water
Congrats.