Apointment tomorrow--please help me prepare

[Luigi]

Hello.
I'm a little afraid of being labeled a "whiner" but I'm going to try to dip my toe in the water here again.
I'm on week five of cpap therapy and i'm exhausted and close to throwing in the towel. After a couple of weeks the suffocating feeling finally eased but then I developed a sore spots around my nose, bloody noses every morning and when i saw the nurse practioner she told me I had a sinus infection and a skin infection inside my nose.
She sent me off the the DME person (who is located in the doctor's office) to get a different mask. After seeing him several times I've come to the opinion that this guy has no idea what he is doing and is basicaly a salesman. He told me there was only one other mask I could try and gave me that one saying that I was allowed one "30-day mask exchange." This mask is the ResMed Mirage Micro. It feels unbelievably heavy and even though it says it's a small I don't think it fits me cause the straps don't look anything like the picture. At first I could not sleep with it on because the pillow part burns and itches when I'm wearing it. In the morning my skin is inflamed. I saw some postings here about making cloth liners and I cut up an old t-shirt and that helps. But I have yet to get a decent night sleep. I'm really exhausted and fell asleep driving to work this morning. Very scary. Fortunately I hit the white speed bumps and woke up before I did any damage to myself or others.
I called the doctor's office today and asked if I could get my perscription and go outside the office to a different DME. My insurance says it will pay for anyone approved by my plan and I have a list of three other places. Well, after waiting a few hours I get a call back from the doctor's nurse who says that the doctor wants me to see Chris again. ( The same person who fitted me for the these masks.) The last time I saw him he made me feel like I was asking for the moon when I asked for another mask so I'm not looking forward to this apointment tomorrow at all.
Please help me prepare. What do I need to be asking this person in regards to the settings on the machine? What about the mask? Is it reasonable for me to ask for a different mask if I just can't seem to get comfortable with this one?
I don't want to be a "whiner" or a "quitter." I've faced and fought far worse things in my life but I'm sooooo tired and confused about this whole thing. I've tried to read as much as I can from this message board but I'm understanding maybe a fraction. At my last apointment I asked for a copy of the printout Chris made from the card he took from the machine cause I thought that might have the various numbers the people who replied to my post asked me about, but he looked at me like I was crazy. (This apointment was doubly uncomfortable because Chris was sneezing, wheezing, and coughing through the entire apointment. When I asked him what was wrong he told me he had eaten too many hot peppers at lunch! All of these antics were going on while he was supposedly fitting me for another mask. Even though it was as uncomfortable as help I couldn't stand being in the tiny office with him any longer so when he said, "looks okay to me" I took it and ran.
I want to go in tomorrow "armed for bear" as they say. If any of you have the patience to walk me through this I'd really appreciate it.

[cflame1]

your machine is fully data capable and allows you to pull the data off the LCD... there's directions under the yellow lightbulb.

Get the directions and find the numbers for yourself.

Take your problems one at a time, post them and let people offer suggestions. Sounds like you won't get many from your RT.

[slapmeawake]

If you can go to another DME why are you going back to this seemingly unhelpful person? Run, don't walk to anywhere else you can get your equipment. To be that unhelpful to a newbie is criminal. Sounds like your Dr. wants to keep the profits in house. He is not on your side in keeping you where you obviously aren't getting help. He is part of the problem. I would find another Dr. also. I don't know how your insurance works but maybe getting them involved will help. The absolutely integral part of your therapy is the mask. You simply must get a good fitting comfortable mask first before you worry about any data etc. Sounds like you could have allergic issues too. This should be reported to the Dr. I use a Flexifit 405 and have found it very comfortable. I have to tape mouth but thats another issue. Maybe you could ask to try that one and see if it works for you. Its an oldie but a goodie and comes in one size with 2 different size seals to fit your face. Good Luck and stay strong!!!!!!!

[enso]

I'm not clear on whether you're ready to quit working with Chris. Are you ready to fire him? How about your doctor? You have to decide this and then it will be easier for you to see your best path and get specific wordings from us here.

If it were me, based on your description, I wouldn't work with Chris anymore. I'd call the dr up and say sorry, that's not an acceptable option. Will you work with me on finding a better RT for my needs? And if he says yes, keep reminding him of that and holding him accountable to doing it. If he hems and haws, you can reflect back to him it sounds like he's maybe not able or willing to collaborate with you right now and have you actively involved in the care of your body and health. Depending on how he responds, you just might discover you need to fire your dr, too. Are you willing to take that step?

Best wishes to you and keep us posted.

[BeanMeScot]

I would quit calling the doctor's office, go there in person and politely request my prescription. They shouldn't try to refuse you with you standing there because they can't. It's much easier to put someone off over the phone. Give them back any masks you currently have through them.

Then get to another DME. The mask is the most important thing in your compliance. If you aren't comfortable, it is difficult to use. Since there are a couple of other places your insurances says you can go, call each and ask what their procedure is for mask fitting. Go to the one where you get the best vibe.

[Luigi]

Thank you everyone for your support. After reading your messages I decided that what I really wanted to do was change doctor's and go to someone more supportive while I work through this process. I found a doctor closer to home that sounds great and will not foist me off on the DME person or a nurse if I have questions or problems. I also talked to the DME company that they use and found out how their procedures work and they told me, " We will work with you and try as many masks as you need until we find one that you can use." Very different attitude from where I've been going.
So I'm in the process of gettting my records transfered and getting set up for a new apointment.
Wish me luck and thanks again for the support.

[Pugsy]

Bravo Luigi,
Sounds like this new group might be "keepers". Your DME Chris sounds a bit like my sleep titration study Chris. Had one way of doing things and one attitude. Neither were particularly conducive to my having a good study.
Good luck and please continue to share as things unfold.
Brenda

[SaltLakeJan]

Hi, sorry you are discouraged, but you are not a whinner. When I first started CPAP, I experienced similar frustration - I didn't think it would ever end. My R.T. wasn't cooperative, I think I know just about how you feel. Your new DME company sounds like they will have a different attitude.

Getting the right mask is critical to your success with Pap therapy. I also experienced sore nares. Ask your doctor and your DME what they recommend to heal the sore places.

Believe me, it takes a while to adjust to the therapy, but suddendly you find yourself sleeping thru the night and you become used to your mask.

Good luck.

Jan

[nate fry]

I have an activa mask, you wear it sort of loose and it is like a leach and sucks onto your face. It is like an airbag, as the pressure comes on it extends and the soft mask contors around your nose. I have bought several mask over the years but you have to have them so dam tight it kills your nose.I would go to costco and get the saline irrigation pack. It floods your nose with saltwater and will heal up a lot of infections. Although at this point some antibiotics may be good as well.

[nate fry]

One more thing,if you have a sinus infection you also have inflammation which makes your airway smaller that increase the airspeed threw your nose which in turn drys it out even more. A little trick I use is to make the machine go at your speed not it's. Hold your breath and then start breathing at the speed you want. Otherwise it will give you a suffocating feeling and that's not comfortable, just a thought. I have about 15,000 hours on mine, have used it around the world on different voltages , off a car battery. Once you see the advantage of this and learn how to make it work for you, you will welcome it. The really is no need for sores, anxiety or fear. It is an acquired experience like many things in life. And you may have a simple defect that can be repaired and make it even better. I finally went for it with several surgeries and had a dramatic improvement. You could also consider an ssri or valium to help you get used to it. The goal here is to extend your life. This is hereditary so if you have brothers , a dad keep an eye on them. I had my uncle and brother get tested, they both have it too. Too late for dad though.Good luck ! n8

[timbalionguy]

I would consider filing a report with your State medical Review Board about your old doctor and RT. It just amazes me how some of these people can retain their practice with such thoughtless service.