Lung Weakness

[schavez500]

I am curious how it feels when the lungs start to go. I have been having problems breathing but I think it's allergies. I moved to an old area where I used to have allergies and now I am having breathing issues. Also high humidity is affecting my breathing. When I take the allergy medicine it helps and I can breathe better. My pulminary doctor is going to conduct a sleep apnea study and wants to put me on the bipap machine asap. I am affraid that if my breathing problem is just allergies and I get on the bipap my lung fuction will deteriorate quicker.. any advice?

 

[Al]

The Bipap breathes for you therefore resting the lung and diaphram muscles. If you lay on your back and feel short of breath or it is hard to expand lungs, you need a Bipap.

AL.

 

[michael0314]

I'm in the process of trying to get a bipap. I did the sleep study with it the other night. It seems to take a little getting used to but did make it easier to breath. Good luck with yours. We began to push for it because of co build up causes fatigue, excessive yawning, and shortness of breath. I don't think it will cause problems for you but talk to your doc about your concerns. With what we are paying them answers to a few questions shouldn't be a problem. lol

 

[schavez500]

Thanks so much, my doc was a bit abrasive.. he immediately talked about the bipap without even checking my lungs or doing a test.. I will ask more questions when I see him. I built a new addition to my parents house and the air is not circulating very well here. I went to the old part of the house today and I was able to breath much better. I will keep you posted.

 

[schavez500]

When I lay flat on my back I can breath better than sitting.. weird huh...

 

[pudge44]

my husband is the opposite when he is flat it is harder for him but when he sleeps or sits upright it is easier for him, no bipap yet.

 

[trfogey]

The evolution of medical standards of care for ALS is encouraging more doctors to prescribe BiPAP earlier in the disease process than they did even just three years ago, when I started on BiPAP. Then, the standard for starting BiPAP was an FVC under 50 percent of normal. I've since heard and read that 75 percent of normal is the level that many ALS clinics are using now and an FVC level of 90 percent of normal is being debated, especially in patients who have existing pulmonary problems (smokers, asthmatics, patients with early COPD, etc.). Some insurance companies may object, but they are starting to come around now.

My advice to you is to go with the BiPAP at nighttime now, while you don't think you need it, unless there is a financial reason standing in the way (insurance company absolutely won't pay). It is much better to use BiPAP when you don't need it, than to try to get used to it when you absolutely have to have it. A lot of people need some time to get used to BiPAP. It's better to go through that time before your situation becomes critical.

Too many PALS have gone to sleep without BiPAP and never awakened. Don't take the chance of becoming one.

 

[TedH5]

The sooner you can get on a BiPap the better. Besides your FVC score you can also qualify based on your MIP or MEP score.

 

[schavez500]

thanks for the wonderful advice. I feel better now.. I will get it..

 

[smwelder]

i just got the newest machine better then bipap. it iis newport ht70 it breaths for you if yours is to low plus it can double as a trach machine if needed later. it has a 8 hour battery with a 30min back up. machine looks like a small igloo lunch box but smaller

 

[rcharlton]

Had a long talk with my respirologist on the subject.

There are three major muscle groups involved in breathing - diaphragm, chest wall and abdominal.

A weak diaphragm will cause breathing problems while lying down whereas weak abdominal muscles will cause problems sitting upright.

 

[Lavender Lady]

All good info. I have a bi pap Respironics. I am still adjusting to it about 30 minutes use at a time. For medicare to pay for it I have 3 months to get up to 4 hours use a day. They have a wireless modem attached to it to monitor my usage.

 

[Miss]

My husband's deteriorating FVC slowed dramatically when he started using the BiPap at night. Before BiPap, he dropped from 125% in 2/10 to 85% in 5/10. By 8/10, he was down to 55% so he started using the BiPap. In December, he was at 54% and last week he was at 53%. Clearly, the BiPap has helped.

 

[trfogey]

My experience was similar to your husband's experience, Missy. Falling off a cliff pre-BiPAP, stabilized for about a year on BiPAP at night during sleep only, followed by another decline when other respiratory muscles began being affected (requiring 24/7 BiPAP), and stabilized again.

The RT's at my ALS clinic tell me that they see FVC declines of more than 6 percent of normal FVC per month (!) in patients who have respiratory involvement and can't get compliant with the BiPAP. Do the math -- 6 percent a month doesn't leave a whole lot of months before bad things happen.

 

[Danijela]

I've been following this thread. My partner was admitted to hospital on Friday, for a sleep study and to try out Bipap. It looks like he is coming out today. His FVC numbers were droping by 5% per month since last Auguts, latest was 62%. I am so hoping for a period of stability, and some posts are encouraging. He managed to use it all night last night, and his blood gases are all fine this morning.

RCharlton, thanks for a simple explanation about muscle groups involved in breathing. My partner does not struggle lying down, his abdominals are gone and I have no clue about chest wall muscles. I think some groups are more responsible for inspiration (e.g. diapraghm), others for expiration. Would like to know more about this.

Dani