Pre-worry!

A few days ago I got a call from the local lung clinic to come in and do a Pulmonary Function Test. It was at a COPD clinic which runs a research program for sufferers of moderate to severe COPD. The doctor said that I'm not bad enough for the research program, but she recommended Lung Rehabilitation for me 2 times a week at a hospital not far from where I live. Of course, she said I need to go to a dietition for help in losing weight. I'm going in the right direction with the breathing issues!

It seems to me that this whole last few weeks have been quite overwhelming for me. With the sleep tests, the cpap/bpap controversy, the new upcoming titration....it's all sort of worrisome. Will the bpap help the TBM and apnea, will I adjust to the machine and the ff mask. I am avidly reading the success stories and gathering advice on masks and humidifiers. It seems to me that those are the big issues...the machines are less of a problem. Correct me if I'm wrong.

One this I know for sure....I am much more well informed now than I was before.

Geula!!
ps.....send hugs!

The hardest thing to get right is the mask. The humidifier is considered a comfort item, you set it where ever it makes you most comfortable. Different machines work differently, one may work for you better than another, but the differences are not drastic.
Finding the mask that works best for you can take lots of trying out different masks. Many of us have spent lots of money trying different masks. Be sure to give any mask a fair chance to work. Ask for tips for your specific mask, work with the mask while awake but laying in bed, give it at least a week or two to see if you can adjust it for minimum leaks and maximum comfort.
Keep in mind it can take 6-8 weeks for your body to adjust to this new way of sleeping(some take longer). As with almost anything you do, if you keep at it-you WILL get used to it. Many of us find that after a while we can't get to sleep without the mask and machine!
Brenda

I wouldn't worry and your health will be improving in short time. It will take some time, but nothing to worry about. Things to think about, yes; worry, no.

I notice you mention FFM in your post. Why are you leaning towards that direction? I had a deviated spetum and the RT said I HAD to use a FFM, but with trial and error, I found that I had so many leaks it was not treating me as well; that I could breath thorough my nose; and that a nasal pillow was actually what worked the best for me. See the article in my sig called "So you think you're a mouth breather"

Also, know that there is a mask rental/trial program. For $14, they will ship you a mask to try, and you return it a short time later. Much less expensive then shelling out the full cost of a mask only to find out you can't stand it.

As far as which is the best machine... well, I think all are good. I have a ResMed, but if my DME or insurance said I had to switch to a different brand, I don't think I would suffer or have any issues.

Good luck,

John

You are right about the mask. I almost quit cpap because of my mask. I found the right one for me and am a happy cpap user. Stop worrying, it makes sleep worse and those of us with sleep apnea know that are sleep needs not to be worse. The worry is understandable though. I tell friends that if I didn't worry about something, I wouldn't know what to do with myself. So I very much understand the pre-worry.You are going to get this all worked out and then you will feel so much better.

chearyshe wrote:A few days ago I got a call from the local lung clinic to come in and do a Pulmonary Function Test. It was at a COPD clinic which runs a research program for sufferers of moderate to severe COPD. The doctor said that I'm not bad enough for the research program, but she recommended Lung Rehabilitation for me 2 times a week at a hospital not far from where I live. Of course, she said I need to go to a dietition for help in losing weight. I'm going in the right direction with the breathing issues!

It seems to me that this whole last few weeks have been quite overwhelming for me. With the sleep tests, the cpap/bpap controversy, the new upcoming titration....it's all sort of worrisome. Will the bpap help the TBM and apnea, will I adjust to the machine and the ff mask. I am avidly reading the success stories and gathering advice on masks and humidifiers. It seems to me that those are the big issues...the machines are less of a problem. Correct me if I'm wrong.

One this I know for sure....I am much more well informed now than I was before.

Geula!!
ps.....send hugs!

Thanks for the replies, they have calmed me down....

Well, I'm a mouth breather with a terrible cough. Breathe in... Cough, Cauph and Kawf! That definitely opens my mouth. I'm also one of those snorers that make all sorts of funny lip noises...My kids think it's a riot! FFM is also recommended for people with TBM. The funniest thing is, is that not many sleep docs or Pulmonary Docs or GPs have seen many patients with TBM! I'm RARE! Therefore, a FFM is the order of the day.

Before I get involved with my bipap, I'll ask the sleep clinic or the rep of the company questions about the best kind of FFM for me. Something small and ladylike and dainty (I'm dreaming!)

Geula!!

Sorry what is TBM? Your worries are unwarranted, if understandable. You have a lot going on. If you have problems you will work through them one by one with the help of the forum (and your docs when necessary because your history is complicated). I wear a total face mask- the FitLife by Respironics. The small size is almost made for a child. It can look formidable, but is very comfortable. Good luck, keep us posted. We're behind you.

TBM is Tracheobronchomalacia.....which means that my trachea is "soft", so when I breathe, it closes up and causes the cough and the wheeze. I'll definitely keep you all informed.

It's interesting that people here say: "Oh, I have the same problem!" That's why forums like this one are so important...people generally like to know that they're not the only ones in the "world" with that specific problem!

Geula!!

Waiting and not knowing are one of my triggers too. There is nothing so frightening as the things we think up while waiting. And nothing so stressful as waiting to get control of things.

You may benefit from the hybrid mask.... has the mouth coverage along with pillows....

Check them out!