Old 06-27-2016, 10:10 PM #1 (permalink)
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Default South of 50

I went for a PFT today ahead of my next clinic visit on July 12th. There is a sign right in front of the little booth that reads " the rt is not allowed to give you your results". But the computer screen is right beside the sign, and being able to read i was able to read the report. My FVC is now at 48%. Not good, in a terrifying kind of way. I was previously sitting at 56-58% for the longest time. ALS really SUCKS.
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Old 06-27-2016, 10:16 PM #2 (permalink)
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Default Re: South of 50

I know it sucks Vince. Sorry. But, also, don't put too much weight in the numbers...you could go back tomorrow and it might be different. I saw it vary more than that due to a bit of chest cold. Keep your head up man.

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Old 06-27-2016, 10:17 PM #3 (permalink)
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Default Re: South of 50

Really sorry to hear about your results. When mine first hit 30, my pulmonologist smiled at me and said my breathing sucks. So, I know what you mean.

That pulmonologist is one of my favorite doctors. I am glad he was the one who delivered the bad news. The good news is that it has held steady there for over 18 months. I hope yous stabilizes for you as well.

Steve
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Old 06-27-2016, 10:39 PM #4 (permalink)
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Default Re: South of 50

Oh Vincent I'm so sorry. How strange that I said the same exact thing to myself today because I fell again and was helpless and alone. My husband then ordered a device that I will wear around my neck and he wears around his neck that will buzz him when I need him.

This disease takes a part of us away each day. It does SUCK big time, and it's so unfair.

Big hug to you from me,
Deb
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Old 06-27-2016, 11:56 PM #5 (permalink)
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Default Re: South of 50

TC is right, Vincent, and then there are variables like time of day, inter-operator variability, your seal, was it upright or supine...it is really not a meaningful measure in ALS, but medicine always takes a while to put research into practice and regulators are likewise stodgy about inclusion criteria.

Measures such as SNIF, SVC, MEP are more meaningful, but some studies show no relationship between most any PFT measure and CO2 retention, which, of course, is most likely to show up when you're asleep.

How you feel while breathing and its quality during your sleep (another reason to track and act on BiPAP data) are way more important.

Best,
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Old 06-28-2016, 05:52 AM #6 (permalink)
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Default Re: South of 50

Yep, it's hard to see those figures Vincent but, as someone who's been under 30% for a couple of years now, I agree it's less to do w/ FVC % and all to do w/ how you feel while breathing.

I know it's trite to say but don't focus on numbers, focus on living.

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Old 06-28-2016, 06:13 AM #7 (permalink)
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Default Re: South of 50

I have also been under 50 for about 6 months now. My MEP/MIP are also very low. The hard part was when my doctor told my that my my MEP/MIP numbers where "critical". But at my next test, three months later when the numbers only moved a point or two down they all seemed happy that by their way of looking at it things had stabilized. Since that last test it is getting harder to finish a paragraph without having to stop to breath. So I expect the numbers continue to head south.

All of that said, what is important as how we react to it. At first it shocked me and inside I was "wringing my hands" over it. But as the weeks progressed we went on a trip to the north Atlantic, to NYC and just continue to try and enjoy each other with what ever we can. ALS can stop your body but not your spirit if you choose to keep pushing.
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Old 06-28-2016, 11:42 AM #8 (permalink)
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Default Re: South of 50

Mine have varied. Depends on time of day, how you feel, exact position of your body, technician.
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Old 07-20-2016, 07:36 PM #9 (permalink)
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Default Re: South of 50

And whether you have eaten. Steve was advised to have a lighter meal before his pft.

Steve's pft we low to mid 40s at diagnosis. His mep/mip were ok. Last he had done, his mep/mip were about 15. He lost considerable function after that.

The docs look for a 10% change visit to visit. Steve was going every 6 weeks and until the 6 or 7 months everything was stable. Then he went monthly until December. Each month there was at least a 10%drop. He still went for appointments but no pfts.
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Old 07-20-2016, 08:19 PM #10 (permalink)
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Default Re: South of 50

Vincent, sorry to hear the PFT numbers, hoping you are doing okay despite the numbers and the challenges this fracken disease leaves upon us. I just had a three day oximetry study done by the respiratory clinic at home, a device that they hook up on my BiPap machine. I won't know my results until my next appointment. Very unlikely they will be any improvement over my last one. I have my PFT done at 3x month intervals.
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