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lerg62

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Happy Monday. I just have a question about feeing tubes and FVC. My brother Buddy's FVC was at 63% back in May, he has another appointment with the Pulmonologist today to see how he is doing (I was down in FL visiting him last week and I saw a big difference in his breathing from when I saw him in July so I am sure it will be lower) I heard that if his FVC is below 50% they will not put a feeding tube in... has anyone else heard this? He actually still has a very healthy appetite and is very very hesitant to get a feeding tube mostly because when a doctor operated on his back they put a staph infected bone graph in and he was months healing and he is afraid he will get another infection if he has any procedures.

on a side note my family did the Long Island ALS walk this weekend and it was awesome! the largest in the country and it was truly a wonderful experience to see so many people out there supporting the cause!

God Bless
Lerg
 

Al

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Hi Lerg. Seems to me I've heard that they (depending on doc,hospital) will go down to 30% FVC to put a tube in but prefer it to be higher. Doing it before needing it is easier on the patient surgery wise and after care as well. Just because you have it in doesn't mean you have to stop eating by mouth.

AL.
 

lerg62

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Thank you Al.

Buddy just got back from the doc and his FVC is at 50% (was 63% in June). They were not even going to test it, the doc was just going to go by his numbers from June... his wife had to tell him that we thought his breathing was worse so they went a head and tested it so now they are going to go a head and put the feeding tube in and get him started on Bi pap machine. I am finding that if it's not an ALS doctor you reallyl have to push these guys. Hopefully he will now be able to sleep more then two hours at a time and get some much needed rest.

I usually just lerk around this forum but can't begin to tell you all how much it has helped me just being able to read all the posts and usually answers many questions without me even asking.

God Bless all of you
Lerg
 

Peg B

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Help.

What is FVC? I cannot look it up by itself. Thanks, Peg B
 

brendapals

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Peg,
If I remember correctly, FVC stands for forced volume capacity, I think. It is a measure of lung function.
wright may get on here and explain it further for you, hope this helps a little,
Keep the faith,
brenda
 

lerg62

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Hi Peg:

Everything I have read says it stands for Forced Vital Capacity. It just helped us and Buddy realize that it was time to start using the Bipap which we hope will make him more comfortable. Brendapals is correct Wright can probably answer more about it.

God Bless
Lerg
 

mndireland

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Hi Peg, I have done a little reseach into the Forced vital capacity, and basically as the muscles weaken in the diaphram and lungs it is difficult for air to be passed. You may notice that you are out of breath a lot more, sometimes just talking can make you out of breath. My mom was at 70% when diagnosed Oct 087, when tested in July she was at 33%, she is going into hospital and I just know her breathing is much worse, so expecting it now maybe at about mid 20's. Breathing for her is almost a chore these days, and she cant even lie down anymore, she sleeps sitting up as she cannot use the bipap during the night, she also suffers clostraphobia, and so will only use the bipap when she knows someone is sitting with her, if she panics a bit she just waves her arms and I have to take it off, she also suffers panic attacks.
I think eventually it is the breathing that affects most people and ultimately causes death, so you should always ask for your pals fvc, I know our doctor never likes to give it to me! He knows Im on the internet constantly, although Ive learned more here than any doctor.

I did read that when it gets to early 30s it can signal end of life, I dont believe it too much, right now my mam is out with her friends for lunch which always includes a few glasses of Vino and a good gossip, her social life certainly hasnt been affected too much! Keep the spirits up guys. We might not be here for a long time but we can have a good time :)
 

CindyM

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I almost hate it when I actually know the answers to these type of questions, because I know from experience and for a person without a DX I shouldn't think I ought to be so familiar with breathing problems. ;)

Oh well, here goes: As your vital capacity gets lower you will notice labored breathing and trouble breathing while lying down, among other things. It helps to sleep on an incline - I use a wedge pillow like the ones they recommend for people with GERD. Some people say it helps to sleep on your side but I always feel like my chest is being crushed.

One thing to look out for is really quick breathing- almost like hyperventilation. If this is happening to your Mom she may feel it more at night. It wakes me up often and it is really hard to get back to sleep. I practice relaxation exercises during the day just for these events in the middle of the night.

As often as your Mam can use the bi-pap, she should. It really helps. Maybe it would even help if she just used it in the evenings, while watching TV. And it may help her to use a nose mask VS a full face mask. I sympathize totally. This is not fun! Cindy
 

Peg B

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Thanks for making the FVC Forced Vital Capacity clear. I was able to look it up and with that and your explanations it is much clearer. I am sorry you all have to deal with it at this time. Take Good Care, Peg
 
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