how FVC is administered is crucial for accuracy

[rose]

The subject of this thread is probably stating the obvious, but, if it happened to me at Hopkins, it can happen anywhere.

In the past we've had some discussions on this forum about reliability of the FVC test during clinic visits. We've all agreed that it is somewhat dependent on the person who is administering it, etc. Some people, just as dear BethU, had a couple of atrocious readings that were better at subsequent appointments.

If you have any sort of bulbar weakness, even if you're not a bulbarian, and your FVC does not go well, INSIST on the full face mask to do the test.

Yesterday, we were at Hopkins, they were running behind due to a medical emergency with another PALS being seen there.

Lora came in to check my vitals, etc. I have been dragging my feet with accepting the suggestion to get the PEG, my reasoning being that if I have a slow progression, and the opening for the tube never really heals up completely, why have it done until I really need it, because its just one more thing that can have a problem. I know this is not the prevailing sentiment on this forum, but it was still what I felt was best for me, in my life.

So, I'd lost some weight, and have become more and more miserable with much of the eating scenario, and was finally ready to cry uncle. After we all agreed that yes, I really needed to get the PEG ("we" meaning "me") Lora checked my BP, etc, looked at my chart, asked if previously I had to have the mask for the fvc test, or if I could use the regular tube. I replied that its been done both ways, and it didn't seem to make a difference. So, the tube being quicker, and as they were running behind, the tube it was. She left the room to get the printout, came back it, and said, "You're at 46%. That's a problem."

I could not believe it! And, no, this is not going to be a post with the moral of the story being to not wait until its too late to have the surgery because of FVC reading. The point is, USE THE MASK for the test if you can't grip the tube tightly with you lips!

Now, about the part about variability of results due to the person administering the FVC test.... In the past, when they'd tried to get my readings up by using the mask, it did not make much of a difference. Not so with Lora. She (instead of me) held the mask to my face, and, by held, I mean she clamped it against me tight, and held onto the back of my head as well - think "vice grip".

We got the numbers up to 68%. That is a huge difference.

It seems that no matter what clinic, or what type of MND a person has, the FVC reading is the main determination as to how well the PALS is doing, and how quickly they are progressing and expected to continue to progress. AND what options are open to them. So, its important to get it right. If yours, (or your PALS) seems off, insist on trying it again.

 

[ccurths]

I wasn't offered the mask! And I didn't know it was an option. I can't make a seal on the tube due to bulbar onset. So they checked my blood gas before I went in for a peg. The numbers were good. Wow it makes me wonder what the heck is going on?

 

[susanf]

You have said what I said the last clinic. My fvc was 80. RT asked me how many pillows I sleep with. I sleep FLAT with no pillows, not short of breath at all. They said sometimes the test is NOT accurate and I'm probably higher. I have Bulbar and my lips do not seal well.
Thanks, Rose I'll ask for the mask next time.

 

[rose]

Good, I'm glad this helped. And, yes, absolutely ask for the mask for next fvc tests. I never had such markedly different of test results from it before, but, also never had the mask clamped that tightly to my face either. It makes sense though, airtight needs to really be airtight.

As a post script, I've been searching some y. tube videos, and the web, for more peg information, and I guess some people do have the incision completely heal. I was under the impression it would not, There was one lady who had a very informative video, and she showed her belly, and I could see that it was healed up, not like a pierced ear, but still definitely not open at all. That is the main thing that was scaring me off, the idea of something remaining open. That, and being allergic to tape, and knowing I need another method to secure the tube. I even get a reaction from paper tape after enough days.

 

[LizT]

Rose- you dont NEED tape. The inflated balloon does very well to hold the tube in. Just have to be a little more careful with tugging on it and all.

 

[ccurths]

Rose you can order G-tube holders from amazon.com. It's a elastic belt with a pouch in front to hold the tube. I've never used tape, too much hassle.

 

[Miss]

My husband's PEG is completely healed, and he doesn't use tape. We just put a loop in it. Also, he had the tube cut short - about 4-5 inches. Honestly, it never gets in the way.

 

[pmbenb83]

Wow, that is very interesting. My husband was never offered a mask and he is now down to 19%. It makes me wonder if this is accurate. I will definitely ask for the mask at his next pulmonary visit.

Thanks for your information. Glad to hear your FVC was at 68% with the mask!

 

[BLPhill]

I have had the fvc test many times. I knew from als forums that you could have a tube or a mask. When I first had the fvc done I used the tube you blow into and it was 72. So I requested the mask as I have bulbar symptoms and in my opinion a weak pucker. When I used the mask I blew a 94. I have used the mask ever since, sadly my fvc is at 82. That was almot 6 months ago. I go for clinic visit on the 22nd. Curious to see what it is.

 

[BLPhill]

I have not held it to my face tightly though. I will try that on monday when I go in. Thanks for the tip Rose.

 

[tmasters]

Diane,

My tube site healed just fine. I can send pics if you want. I really don't know what this is about it not healing well, I've never heard that.

I found lots of links on y. tube. Just srch for "peg insertion". But be ready to see the whole procedure in all it's glory.

Good luck. I realize this wasn't your intention, but I think your post may help others who have been putting this off for too long.

-Tom

 

[rose]

Tom ... pictures huh Seriously though, thank for the input, its always good to hear from you. I am scheduled for the consult, but its not until middle of next month. I could have gotten in to another doctor sooner, but this guy I've already seen,; I know I like him, and he's the main guy the clinic uses.

I looked up the elastic belt, I may order one and play around with making some out of fabric that is not white and so "patient" like. Who knows, maybe a new cottage industry for me. (not really) Just making a loop as Missy mentioned sounds even better.

Pam, yes, absolutely ask for the mask. I'm surprised that so many here have not been offered it!

Betty, I never thought holding it that tightly mattered either, but obviously it does.

 

[lms9258]

Even though we no longer go for Clinic appts., I am going to speak with the ALS clinic's Patient Care Coordinater about this. My mom had bulbar onset. They ONLY used the tube at her appointments, never mentioned a mask. My mom was never able to comply completely, and the last couple of times not at all. The FVC number is important to the patient and caregiver. After all, it was one of the only indicators about where her breathing capabilities were at. She (RT?) told us it was not that important. (Not to them I guess). It was one of the most important to me. It makes me a little angry knowing there was another option, and they didn't use it. Thank you for posting this Rose. It's to late to be of help for us, but maybe by my passing along this info to the ALS clinic which serves a large area in Wisconsin, it will help other pALS and CALS in the future.

Laura

 

[susanf]

This is a perfect example why this site is so important to us. If to rely on the ALS clinic I would have known about 20% of what I learned on here.

 

[Mark's Girl]

Rose and friends....thank you so much for the information on using the mask for the FVC testing....so far, the clinic has only tested my husband without the mask....and his numbers have been going both up and down in the same visit. It feels like the RT person just writes down the number they decide on and move on....using a mask was never offered.

Our next clinic appt is in Oct....I will insist that they use the mask so we can get a better bearing on what his real numbers are.

Many thanks to all!

D