How to know when BIPAP needed?

[lisaann1170]

My dad (diagnosed 6-9-09, bulbar onset) is having difficulty sleeping and I've read that this may be due to decreased lung function. What test do I need to request and is this the purpose of the BIPAP?

He has a neurologist in his small town who's never had an ALS patient but he's scheduled to visit an ALS clinic in Milwaukee (where I am) for the first time next week. In the meantime, I'm considering requesting some sort of test from his local doc to give him some relief.

He complains of his throat feeling dry (I suspect "irritated"), but yet waking with mucus in his throat. He says he can't cough properly or swallow whatever blocks his throat. A recent swallow test showed that he has a decreased ability to swallow, although primarily liquids. He's on acid reflux meds, but I'm not sure that would dry out his throat enough to cause issues like this after he's been on the pills for years. He also has a long history of sinus issues to complicate matters. He's not sleeping well and I wonder if his lungs are now affected and if a BIPAP is what I'm after. I must admit this issue frightens me!

Thanks for any suggestions or sharing your experiences.

 

[Phil M]

The clinic should be able to tell you. they will check his breathing. Yall might want to bring it up.

 

[hopingforcure]

I think you need to ask the doc for a fvc test for your father. Sorry you have so little resources in your town, but still should be a doc that can provide or schedule this test. I have the same problem, had it early on, even when my breathing was in the better range. Should have his breathing monitored, and should try to get him to a ALS doc, or neuromuscular specialist, to get a progress idea on him..

 

[BarryG]

The clinic will probably include a pulmonary test, I would be surprised if it didn't. Every three months when we make our 600 km trip to the ALS clinic they arrange a breathing test for me and so far I've had good results.

He may or may not have breathing problems yet, maybe it's only a mucous problem. I (like most bulbar types) also suffer from thick gooey mucous caused by saliva pooling, the inability to swallow saliva and the open mouth thing. Difficulty in swallowing liquids also contributes to the gagging gooey stuff because you can't keep you mouth moist by drinking. One thing that I have found that helps me is to drink water is I installed a bar type tap which has a tall spout and I can stick my mouth under the tap and kind of let the water flow into/through my mouth and slurp. It isn't pretty or classy but neither is seeing me trying to drink out of a glass or bottle! And there is hardly any choking. :smile:

I hope that your dad can get the help that he needs and please let us know how he makes out with his tests.

Barry

 

[lisaann1170]

Thanks for the replies!

I called the neurologist who will be his doctor next week and asked for an FVC to be scheduled where Dad lives. He goes in tomorrow. Clearly, I had the right amount of concern in my voice when I called!

As an aside, I also talked to the diagnosing neurologist's office and the nurse had never heard of an FVC. Sometimes you just know when you need a new doctor!

Lisa

 

[trfogey]

Hi, Lisa.

If the local neurologist for your father is that unfamiliar with the needs of ALS patients, you'll probably want a local pulmonologist for your father in order to keep track of his breathing issues. A pulmonologist is much more likely to be familiar with the various options available for your father -- Bi-PAP, ventilator, etc.

 

[MtPockets]

Educate your Doctor if you have to

Many Doctors have no idea of the symptoms or treatments for ALS patients. I have used my computer several times to print out material that I thought might help my family Doctor understand better what and how to treat me. Many of them appreciate the gesture because they do not have time to look it up themselves. Just a thought.
I have even printed out different medicines from webmd.com or http://www.pharmacyhealth.net/
http://www.drugs.com/pill_identification.html

I also use google to find information such as this on Neurontin which I was on for years before I read this:
http://www.onlinelawyersource.com/neurontin/class-action.html
"Missing from the warning label is a mention of suicidal tendencies, which have recently been linked to the drug."

It pays to spend time checking for yourself what are the effects and side effects of the medicines you are prescribed. We cannot be too careful.

 

[Erica]

BIPAP recall

I thought it might be useful info...

BiPAP Focus Non-Invasive Ventilator System, Respironics California
Audience: Respiratory healthcare professionals, risk managers

Respironics California, Inc. and FDA notified healthcare professionals of a Class I recall of the BiPAP Focus Non-Invasive Ventilator System, model number PCM120PS18-2315P. Power supply failures have occurred on some ventilators. This product was distributed from August, 2006 through April 11, 2008. Customers/distributors may contact Respironics U.S. Customer Service at 1-877-387-3377 or Respironics International Customer Service at 1-724-387-4000.

Read the complete MedWatch Safety summary, including a link to the FDA Recall notice, at:

www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm171242.htm
______________________________________

 

[fishing890]

Barry,

Can you please post a picture of the bar type device that you use to drink water?

Thanks

 

[georgia]

If you look at my album "bathroom" the first pic shows the sink with a bar faucet. Click on it to see it larger.

 

[BarryG]

Hi fishing890, i will post a picture of a bar faucet that is very similar to what I have. They are easy to install as they fit in the same holes as a bathroom faucet and they are not expensive. These type of faucet should be available at any plumbing or home improvement store.

 

[BarryG]

Here is a picture

 

[GlenBrittle]

Barry ,

Just wondering , wouldn't one of those old Aqua-Pics work as well ?

Glen

 

[BarryG]

Hi Glen, good question and for a couple of reasons the answer is no. When I have anything to eat it takes gallons of water to rinse the leftover food out. And even if I don't have any leftover food my mouth is full of thick gooey saliva that is the stickiest stuff in the world. My mouth feels like someone emptied a whole bottle of glue into it and it takes me about 5 minutes with my toothbrush and all the water that can come out of the tap to clean it out. And with this tap I can actually drink water again, something about my head and neck being in the right position. When I am bent over the water flows down in the right direction without choking that it doesn't when I try to drink out of a glass or bottle. Like I said a while back, I just need a tap that dispenses beer and I'll be a happy guy. :razz: