Newbie With Concerns

[rogelah]

I had my appointment with the sleep doc today to review the results of my sleep test. I have a form of muscular dystrophy (MD) known as FSH (fascioscapiohumero). I had been told that eventually I might have difficulty breathing. The FSH is a mild form of MD that is progressive and several months ago I noticed a further weakening of my upper body muscles (upper arms, shoulders, etc.) and difficulty breathing when in bed as well as difficulty getting to sleep. So, remembering the advice I went to see the pulmonologist.

He told me I definitely had sleep apnea (AHI of 60) which he characterized as severe. He explained that the muscles which assist breathing had weakened to the point that I am unable to take in or expel full breaths. He also said something about breathing stopping during sleep (an apnea?) of a duration of from 29 to as much as 60 seconds. He also said my oxygen saturation dropped to low of 73%. He wrote an Rx for a BiPAP machine explaining that the progressive MD indicated the necessity.

I have been boning up on differences between CPAP and APAP machines and had done no research on BiPAP. In the collective wisdom of this group is BiPAP better than APAP (at least in my case) or does APAP provide the same benefit or are there BiPAP machines that also provide what APAP does.

[Julie]

Huge mistake - VERY sorry, was thinking about another poster (though the part about Bipap was meant for you). Some days I should keep my mask on all day!

[rogelah]

Thanks for your response. However, I am not sure what you mean by anxiety problems. What did I write that makes you think I am anxious. MD in an adult is not something most doctors encounter in their practice and I have learned to be proactive in my care by being ahead of the curve. MD is something I've known I have since I was 28, had no day-to-day problems 'til I turned 42 and has slowly progressed to the point at 69 where I use a power chair since I can no longer walk. The loss of my ability to use my arms to sit at a table or sit up in bed to eat are things that I have learned to live with. Since until a year and a half ago I lived by myself with the understanding that what I can do, I do; what I can't, I ask for help; if there is no help I forget about it. If I can't ignore it I call 911. I now have a full-time caregiver, a really nice hospital bed that looks like a piece of home furniture and use a Hoyer lift to get in and out of bed. What you call anxious I call being ahead of the curve.

[ozij]

Rogelah, I wonder if Julie's response wasn't meant for another poster, whose post was just above, or just below yours...
At any rate, considering that your muscles are involved in your breathing problem, I suggest you take a look at this:
avaps.respironics.com. This is a relatively new machine, developed for people whose breathing has volume restrictions, which seems to be your case.

It seems to me that any machine that gives you exhalation relief will be better for you than one that does not. Normally, we do not use our muscles for exhalation - but have to do that when exhaling against the continuous positive incoming air pressure. Automatic machines sometimes have some exhalation relief (Respironics has C-Flex, ResMed has EPR) but that may not give you the differential you may need between inhale and exhale.

I'm not a professional in this area, not a medical person at all. I think you would need a BIPAP (that is, a bi-level) to give you the breathing support you need.
O.

[rogelah]

Interestingly, I searched the MDA website and found a little information regarding sleep apnea. Where it did address it there was more information about using a respirator than a BiPAP. However it did recommend BiPAP over CPAP. At sometime in the future I may be candidate for a respirator if my needs expand to times when I am out of bed. Right now I am hopeful that a BiPAP or APAP will suffice even if I wear the mask in bed when I am not sleeping which seems to be increasing. Getting out of bed is a real chore even with the assistance of a caregiver.

Thankfully the Internet keeps me occupied so I don't mind it as much.

Julie, if you are reading this please forgive me for putting my mouth in gear before engaging my brain.

[cpapqueen1]

bipap for sure. You may find more research under restrictive lung disease verses OSA.

[rogelah]

bipap for sure. You may find more research under restrictive lung disease verses OSA.

Thanks, I found a lot of new information. It certainly had more to say about FSH MD solutions including lighting up a "joint" (good). That seems counter to a problem of breathing.

[rogelah]

Since I am a Medicare subscriber there's little or no chance of getting a BiPAP to start (or does someone know how to get around the required 30 days on CPAP with no improvement?) I have narrowed it down to a Resmed S8 Autoset II or a Respironics M Series Auto CPAP with A-Flex.

I am interested in what actual users of these machines think of the exhale relief. This is what the BiPAP would do for me. Or does someone think there is a better alternative?

[stevefsh]

Hello,
I just read your post through a "google Alert" email message.
Anyway, I am a 58 year old male living in the USA and also
have FSHMD. I was diagnosed in 1998.
I have 3 adult sons that also have the disease.
I feel the best advice I can offer you is to get in touch
with "The FSH Society" .You can become a member if
you like ....or just take in all the information on the
Society site.
Take care,
Steve

[cpapqueen1]

You can get a bipap from the start if you use the RAD dx and not the OSA diagnosis. You need an FVC value....shoot it's been a long day...I can't remember the value.