lung function

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Jeannie

Distinguished member
Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
City
Vernon
Hi everyone~ my mil went to the clinic today, well they said her lung function was 24% I realize this is bad but I was wondering how bad. I think I really need to hear it from someone else.
She wont give us an answer whether she wants a vent or hospice and would not answer the dr. today. I can't imafine how scarey this must be for her but I am so afraid something will happen and we will make the wrong decision for her.
I wish this wasn't so hard. I feel a catastrophe could happen at any moment now and I want to be as prepared as possible to support her and my husband.
Hope you are all well
In friendship
Jeannie
 
Hi Jeannie, if that reading is accurate then things are getting pretty bad. Is she using a Bipap most of the time now? I am getting the feeling she might not be open to a trache and vent but I hope I am wrong. She should get them now as the quality of her life will vastly improve. I got mine when my FVC was 30% Wishing you the very best!
 
Thank you Joel for your response. Things are getting on the bad side. She is extreamly weak, no function in her arms and just recenly her legs are going. She is on the bi-pap at night and dosen't reallywant to wear it during the day. There are so many issues that are so hard to get into but we are hoping she makes a decision so when the time comes we know what to do for her. The dr. asked if there were cognative issues going on b/c she wouldn't answer his questions but if she dosen't like what she hears she shuts down. We are all willing to support her wither way, we just wnat her to make a decsion so we can follow her wishes.
I am so concerened because I think 24% is a pretty low number for lung function. Thank you again for your care and concern. You are amazing.
In friendship
Jeannie
 
I am looking at your post and my wife is facing a similar situation.

Her lung function is pretty bad. We just had a "bedside" pulminary test done. I don't know what it showed, but based upon the results our Dr. has prescribed a cough assist and suction machine. They both arrived yesterday. We are being trained on their use next week.

My wife has already made the decision not to have a vent. She currently is not using a biPaP, but she may consider that.

Can anyone offer opinions or advice on the cough assist machine?

Thanks

Paul W.
 
Paul and Jeanne ... I am so sorry for your situations, and hope that your loved ones get some real relief at this stage of the disease.

Paul, when your wife gets going on the cough machine, I hope you will share her experiences and training with us. I have had mine for a couple months, and just can't get the hang of it. I am going to get my caregiver to try to use it and see if we can work it out, but so far I'm struggling with it. I'm also having trouble with the suction machine, which seems like an extremely simple gizmo.

Good luck and God bless ...
 
Hi. Greg hates his cough assist machine. He thinks his tongue feels weird when he uses it. However, I must say that thing can really get some of that yuck out. At our most recent appt., the ALS nurse advised us to practice with it on manual for choking episodes. She said that machine can't be beat when choking problems occur.
 
My soon to be 88 yr old mother was diagnosed with ALS last Sept. She got her cough assist machine and suction machine two weeks ago. Both are extremely easy to use. The suction machine is just like the one the dentist uses to suction out saliva while he's working. She can do that alone. The cough assist is also very simple to use. Someone with arm and hand mobility can easily do it without assistance. Here's a video I found on youtube.com explaining the use. We have the mask.

YouTube- RESPIRATORY CARE: Cough Assist Therapy
 
I had my pulmonary function test done on June 18th, 2009. Since I started having more cough and mucus, it was repeated again today. I was told that my FVC went from 90% to 72%.
Is that really possible?
Does it mean that I have a a rapid progression?
Thank you,Cookie
 
Cookie, yes, it is possible to go down that fast but it also might not get any worse for a year or more. There is no telling what might happen in the future. Try to relax and not worry about it.
 
Joel,
Thank you very much for your reply. I hope everything is going well for you and your family.
It just so -so scary. I was given a preliminary diagnosis of MND only 2 mo ago and was told that symptoms usually developing rather slow.
Over the last 2 mo I went from R arm atrophy and weakness to having fascics all over my body, throat spasms, breathing problems, coughing, throat clearing and extreme fatigue.
I'm having a such hard time to finisn my day at work...
I was told that I can't file for disability until I have a final diagnosis.
When I went to ALS center (2 weeks ago); they told me that they will be confirming my diagnosis at my next appt in 3mo.

Thanks again, Cookie
 
A lot of people have a rapid progression and then it stops for a length of time. My last plateau lasted one year.
 
Joel, Thank you for your kind words and all you do on this forum. Cookie
 
cough assist machine

My husband relies heavily on his cough assist machine. I wouldn't say he "loves" it, but it sure does the trick. He's pulled out food plugs that would have choked him to death - breakfast sausage, steak, etc. He also uses it when there is excess mucous that he can't clear himself, or when saliva trickles down the wrong way. Work closely with your respiratory therapist. My husband's RT made sure that both of us were comfortable using it before he concluded the appointment. It can be individualized regarding the inspiration and exhalation pressures, duration, pause duration when on automatic or you can control it yourself in the manual mode. One caution though is to get familiar enough to make incident specific decisions about operating functions. For instance, when it's solid food that necessitates use of the machine, my husband does not use the inhale feature - you don't want to push that food blockage further down, you only want to pull it out. So he uses manual mode, or just pulls the mask away on the inhale when it's on automatic and moves the mask back into place for the exhale. He does use it on automatic, inhale and exhale, when using as a preventative for his lungs or if it's just a saliva trickle. We have found this machine invaluable, and in fact have taken it traveling. We have hauled it to friend's house when having dinner. Everyone has just learned that it's part of our lives now. Good luck.
 
Wow newbie! Thanks for that informative post! That's a "printer outer!"
 
Similar to Jeanne, my mother was diagnosed in March 2009 and is rapidly progressing. In March her lung capacity was 43%, July 1st it was 30% and now about 20%. She has had the Bi-Pap since March and uses it only at night. She struggles all day every day with breathing, but is stubborn beyond belief and apparently would rather gasp for air than admit the Bi-pap is helpful.
She does not want a PEG or Vent and can no longer walk, speech is difficult at best and has very limited use of her hands and arms.
We keep asking also how low the lung capacity goes before they infuse oxygen with the bi-pap... or do they? Or how low until they suggest the vent?
Our next clinic visit is now one month away. Getting there will be interesting as we do not have the means to transport her power chair and will struggle with getting her in and out of the car.
 
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