spirometry results question

[Jeanau]

I have a copy of my spirometry test results that I had done yesterday. There are a lot of confusing abbreviations and percentages. One nice thing about the report is that they show the numbers of the last test beside the numbers of the current one.

I went in knowing that my breathing was more labored, I'm waking up with a headache, and I'm very tired. So, I wasn't surprised when they called today to tell me that I need a trilogy.

I've searched the forums and I see that trilogy is the best way to go. The questions I have are about the spirometry test results.

On 7/6/2015 my FVC% Pre Pred was 78..yesterday it was 64. Is this a normal rate of deterioration? Is there an average percentage per month that it should be? Or, is it like everything else with ALS...different for every person?

The change in my breathing was one more reality check and reminder that I have ALS, and it is not going away or getting better.

Thanks for your help with this. I appreciate all of you!
Audrey

 

[BlueandGold]

Right there with you Audrey. In June mine was 85%, in September it was 73% and last week it dropped to 68%. It is disheartening to have this number drop and to know that, as you said, "this is really happening". My doc ordered a trilogy for me to use as well.

My best to you,

Vince

 

[fionae]

I'm sorry this is so discouraging. You both are in my thoughts. Sincerely, Laura.

 

[gooseberry]

It drops at its own convenience! It can be stable for months, then drop 10 percent in a week or a percent per month. It changes person to person and with each decline. Steve nosedived in the beginning, had a long period of stabilization and is now declining. His appears to be picking up too. This is a different decline because he is losing all his core and accessory muscles. So after the long answer, everyone is different.

 

[hjlindley]

This disease is incredibly variable. I've had it for seven years and still can breathe, eat, and talk. But my hands are almost useless and I've been in a power chair for a couple years. Good luck! The trilogy is a great machine and very versatile.
Hollister

 

[texastc]

Everything everyone above said. Sorry, But...
I saw the test be low one time...38%...then 65% at the next visit, 3 mo later. Any sickness, cold...sniffles, etc will definitely have an adverse affect on the test results...and your breathing as well. So...
Do not fear the trilogy. It will help you breath better, whenever you are having difficulty. In our case, we used it at night and that was usually sufficient to help keep the headaches away and make you feel better overall...due to the increased air. It has the capacity for a primary and secondary setting. Primary being whenever you most need it, secondary the other. Less breaths during sleep, increased breaths while awake. Get it and get used to it, that way later on...when it becomes more necessary...it won't keep you up at night. There are several different...100's, of facemask makes/brands etc. We fought those quite a bit...you will likely go thru several different ones before you find one that you can sleep with. We can help you thru it, and you can do it. The sooner the better you will feel, and it is a good machine...the only one you will need. Your respiratory dr. will recommend you to a supplier that will rent it to you. Ours cost about 170$ a month after insurance had paid their part. Let me know if and when I can give more help, really familiar with this machine.

 

[anderkling]

Audrey, I'm sorry your numbers have been dropping. Funny how you and I have been in step with our ALS progression. I was delivered the BiPap last week, and it certainly takes some getting used to. It does make your heart sink to think we're moving into the next phase, and there's nothing we can do to stop it. Hopefully you will plateau. Thinking of you,
Charlene

 

[lgelb]

Audrey et. al.,
I periodically mention the only non-silicone mask, one that even some mouth breathers can use in sleep, the Circadiance Sleepweaver. It is just nylon cloth over your nose, so may be more comfortable than traditional masks.

 

[Jeanau]

Thanks Laurie...where would I get one?
Audrey

 

[lgelb]

Google for the best price. I see one site has it for $69. You could also ask the DME, though the cost to you may be more than what your online price would be.

 

[Jeanau]

Thanks Laurie. I don't know why I'm so nervous about getting the trilogy. I think that it is making me feel like I'm progressing much quickly than I prayed for. I know my prayers should be...thy will be done...but I am human after all.
Audrey

 

[lgelb]

Audrey, we are all human. The Trilogy will help you breathe, leaving you more time and energy to connect with the world and people around you.

--Laurie

 

[fionae]

God Bless You, dear Audrey.
Sincerely,
Laura.