Breathing issues

[Bestfriends14]

Hi all,

Wayne's breathing went down significantly from our appointment 3 months ago. His FVC went from 87 down to 82, and his Sniff (sp?) Went from 84 down to 62. We asked what this meant and, from how I perceived it, everyone skirted the issues and we got no straight answers. Can anyone tell me what this means in terms of progression?

Thanks

 

[affected]

How has his breathing changed during this same 3 months? This is far more important than a set of numbers because so many things can affect the numbers such as lip seal, being tired or nervous.
The numbers mean progression, but they are not a reliable measurement or predictor of progression. Some people feel a lot of effect of a lost of 10 points FVC, while others feel little difference after a loss of 30 points.
It is all scary though I know.

 

[Bestfriends14]

Thanks so much. He feels just the same, which is good. We are going to Palm Desert for 4 months, so the length of time away does have me nervous, but the respirologist did not seem too concerned.

 

[KarenNWendyn]

The rate of progression is not linear. My FVC sat in the 70-80 range for over 6 months before they started to drop. Most docs will consider BiPAP when it gets closer to 70 or even lower. The previous criterion was FVC of 50, but there is increasing evidence that BiPAP is beneficial when started earlier, like closer to 70. Wayne is safe where he’s at now. It’s unlikely that the decline in the next 4 months will be too severe.

 

[swalker]

In my experience, the PFT results vary depending on how the patient is feeling, the position they are in, the quality of coaching they receive, and the overall effort they are able to put into the test. It is my opinion that a PFT is good for tracking overall progression of breathing, but that FVC decrease or increase by 5% from the expected value are pretty close to insignificant. If it falls 5% for each of the next several visits, then it would be meaningful.

My history is that I started with an FVC of about 60%. It decreased over a two year period to 30%. The decline has since slowed down, gradually going to 20% and now a bit below 20%. It took almost 6 years to go from 60%ish to 20%ish. It has held pretty stable around 20% for the last year.

Everyone is different. I think the overall picture the PFT provides over several tests is valuable, but is not something to get too excited about. Many people have respiration ability that is better than their PFT numbers would indicate. In my case, I was able to keep oxygen levels up and CO2 levels down even with an FVC below 30%.

In the US, under Medicare, there are certain FVC levels that trigger automatic qualification for some equipment (like bipap). The PFT results can be important in that regard.

Steve

 

[KimT]

I got very frustrated every time I had a breathing test or study. I now own my equipment and can assess my FVC, MVV, MIP, MEP, and SNIP.

The reason for frustration is that My numbers varied from place to place and depending on how tired I was, the time of day, if I had a full stomach, etc. There also is operator fluctuations and different places use different base numbers (yes, there are more than two.)

I found that if I do my SVC (slow vital capacity is replacing FVC as a better indicator, according to Mayo), MVV (the volume of air you can move in 12 seconds) and breathing muscle strength (MIP, MEP & SNIP) in the morning on an empty stomach it can make a difference as much as 10 points! If I'm exhausted from being out all day or eat a heavy meal, I will always have lower numbers.

Like Karen says, breathing progression is not linear. I progressed the most during the first year, then pretty much leveled off until this year (3 years with little or no change). I noticed I dropped about 5 points this year but my MVV is still over 100% and my MIP and MEP are both in the normal range. I also discovered that I do about the same lying flat, sitting up or standing on the FVC and SVC.

I decided to go by how I feel. The other issue is that when you are sedentary, your numbers will decrease over time as they will with age. There was a guy in my support group who had a FVC of 20 with absolutely no shortness of breath. He didn't use a BiPap and is still alive.

I do believe them when they say early use of a BiPap will help you but I think it's mostly a quality of life issue like having more energy and sleeping better. We all know good restful sleep extends life and gives you better mental clarity.

 

[Bestfriends14]

Thanks, everyone. Wayne's breathing went from 97 early this year, to 82 and the sniff was down from April. Your responses have put my mind at ease, so I thank you for that.

I was feeling heightened anxiety from an all around not great clinic appointment, so I tend to over react or get way too worried. For me, because Wayne is slow progressing (we figure 6 years now), that I have put myself in a bubble, so that when obvious progression happens, I completely fall apart for a couple of days.

Oh well, one day at a time; our lives are filled with so many blessings. We are grateful for that.

 

[nona]

I think the clinic appointments are tough because it feels like a performance exam that we can rarely beat. I dread the questions that end in "yet." it's been a long time since I've been able to do an FVC because I can't seal, and honestly I prefer to go by the subjective " how do I feel?" than performance measurements. Hang in there!

 

[lgelb]

Yes, breathing support should always be treating the person, not the numbers. That is why you can never say "this pressure" or "these settings" for this height/FVC/SVC/MIP/MEP.