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DeansWife

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Oct 18, 2011
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197
Diagnosis
08/2011
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State
AL
City
Fairhope
Wondering if anyone else has encounter this situation. Over the past month Dean gets very short of breath after walking to the bathroom etc. He is using a walker. I've taken him to the ER twice because it's lasted longer than 15 - 20 min. both times. The last trip to the ER he was on oxygen and being monitored. While resting, his level was in the 90's however, when he stood up to use a urinal it dropped into the low 60's. Chest x-ray revealed his lungs were clear.

Because his blood oxygen is always OK when checked in the doctors office, medicare will not pay for oxygen. I called the doctor yesterday and explained how it drops only upon exertion. They are going to send a monitor to use for a 12 hour period and see it we can get it justified. I'm sure it will drop everytime he gets up and walks.

We recently moved and are now three hours away from the pulmonologist that he used. I've been working at getting him in to see one here that was recommended and finally today got a appointment for January 29th! Damn, a lot can happen in the next two months. I'm calling Monday to get on their "cancellation" list in hopes of getting in earlier.

So anyway, has anyone else experienced this same situation as far as the blood oxygen goes? It really scares me when he can't catch his breath for extended times.
 
I recently went in for difficulty breathing & my O2 saturations were 98% but I was wheezing & my FVC was down to 70%. Looks like mg diaphragm may be affected by by the ALS . When in the ER or Dr. Office have them check his FVC, may be a diaphragm problem.Oxygen won't help and may cause more problems. Hope you get into pulmonology sooner.
 
My mil gets short of breath while walking. Our new problem is she can't breathe when I'm cooking or baking. She is very sensitive to smells. Her bipap comes tomorrow as her lungs are at 42%. When she is sitting, her oxygen is 95%. Never had it tested while she is walking with her walker. I will make sure to have it tested next week.
 
Time for a BiPAP, Deanswife. If he's having trouble breathing in oxygen chances are he's not expelling CO2. The BiPAP will help with both. Taking in oxygen on its own will force him to store CO2. Not a good thing! Talk to somebody at your ALS Clinic or even Society. For his comfort and for everybody's peace of mind, the sooner the better. Don't wait. Yasmin.
 
My dad just currently uses his bi-pap just at night and his breathing has improved. My dad is prone to being claustrophobic and I was surprised he could handle having a mask on. But, he tolerates it really well. He isn't much for using alot of equipment yet but he would strongly recommend the bi-pap for sure.
 
Thanks all for your response. Our family doctor is having his blood oxygen monitored for 24 hours starting Sunday. Because it's OK when at the doctors office (he's not walking etc) medicare will not authorize oxygen. The doctor is hoping that doing the monitor will show how it drops when he is at home in his living environment and using his walker. Meanwhile, I'm going to to everything I can to get him seen earlier by the pulmonologist for the bipad or trilogy. Sometimes, actually most of the time, it's frustrating dealing with doctors because they just don't understand ALS and it's workings and the urgency when something is needed. I won't give up! They will get so sick of me they will work him in (I hope). Hugs.
 
It's the BiPap he needs. Read what others have to say about adding oxygen. Not a good thing. Seems logical, and I guess it is for non ALS patients, but it is not good for ALS patients. Many pulmonologists really aren't familiar with ALS. Sometimes, you have to do the research and present it to the doctors.
 
Oxygen may be the worst thing you can do for him there is a difference in needing bipap but when you get a bipap make sure you get the one that will give him air if he doesn't breath. My oxygen level is always 97 or 98 and I use my bipap pretty much 24/7. Also be very aware a lot of medical doctors don't know the first thing about what als patients needs are.
 
Use the Bipap. I went to my PCP and was put on oxygen. When I went to ALS Clnic I was told the oxygen was making me dependent and would end me up on a vent. I have to try to breath on my own. For a week I thought I would die without the oxygen but finally the bipap is helping again and I am working to breathe. Stay with with a Dr. that knows about ALS. Most Dr.'s have no idea.!
 
HI

O2 is usually contraindicated in ALS patients because of the diaphragm difficulties. It's more an issue of the muscles used to breathe then the lungs themselves--so oxygen can actually lessen breathing effort.

Bi_pap would likely help more. Unless he has underlying issues such as COPD--or even exercise induced asthma. My doc would only allow the O2 because my breathing issues are both from weakened muscles AND shot lungs.

You can get a cheap o2 sat monitor from the drug store and check it at home frequently, too. (under 30$ at Walgreens.com)
 
We received the concentrator today. I'm aware that oxygen is not good for ALS patients and am working diligently at getting him seen by a pulmonologist. Having just moved to a new area, it's not as easy as writing it down here. I have called and called. I'm very frustrated with all the doctors in this area. His o2 dropped into the 40's during the night last night, happened when he got up to use the bathroom. He will only use the o2 to ease his breathing. I'm aware that the Bipap is the answer and wish I could just go buy one and cut out the doctors that just don't give a damn! I'll continue to push to get him seen by the pulmonologist, either local or VA. Both appointments are a couple of months out. My next move will be the ER - again! Doesn't seem to be getting anyones attention though. Thanks all. Hugs.
 
If you do end up going to the ER, tell them what you know about ALS, BiPAP's, etc. Maybe that could be your starting point. Tell them no oxygen, just a BIPAP. They should have them around. I understand your frustration! Yasmin.
 
What about your ALS clinic? can you call them and see if the pulmno there can prescribe a bipap? it seems like such a simple request...
 
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