What is a good FVC

rocmg · 11-02-2009, 09:18 PM

hi... what is considered a good FVC... mum had her first spirometry test and averaged 84. i[m not sure if this is OK or whether I should be looking to get her on a bipap. test was given by GP as mum has been pretty adamant about not attending any clinics, specialized or otherwise. thanks in advance!

thelma313 · 11-02-2009, 09:53 PM

I think that it very good and I'm happy to hear this number! My dad had and FVC of 51% when he got his Bipap and at his last test, he was in the 40's. 84% is very good. Has your mum ever complained of shortness of breath? I'm not an expert of course, but in my opinion she is doing very well!

GlenBrittle · 11-02-2009, 10:13 PM

I agree , 84% is good.

If it starts to drop , ask about BiPap. When it drops , it takes big jumps. mine was from 81% to 57%.

Janeth · 11-02-2009, 10:21 PM

Hi all, I’ve just found this blog and find it really informative and my empathy to those people who have or know someone with ALS. My husband was diagnosed about 12 months ago but has rapidly deteriorated. His lung capacity is now 29% and complain of chills and fever. He is now on antibiotics for 5 days and cannot swallow dry food due to mouth dryness. My question is if he has pneumonia as the nurse said to just continue on the antibiotics.

rocmg · 11-03-2009, 01:16 AM

thelma and glen-- thanks for your comments... mum has never complained of shortness of breath. she still sleeps on one pillow at night and doesn`t appear to need more breaths when she exerts herself... although i`m sad to say that the times she exerts herself are few and far between these days as her walking has really slowed up. she uses a cane but i suspect she needs a roller and a wheelcahir for longer distances. for some reason, the damned diseas seems to have done the damage to her voice and moved on... for now. Her speech is still intelligible to everyone although she is self-conscious of it.

Janeth... I`m so sorry to hear about your husband and this rapid progression. I think that your nurse should try to ease your mind about pneumonia -- it should be a fairly straightforward yes or no answer to that question. pneumonia can be life threatening for PALS so I suggest you seek help from someone willing to take your concerns seriously ASAP.

rose · 11-03-2009, 12:32 PM

Hey, I just wanted to remark (again) how similar some of your mum's steps of progression are to mine. Like her, my voice is very weak, and although my speech is not normal, it is intelligible. As for FVC when I was first diagnosed, it was at 102%. 4 months later it was around what your mum just tested at. From there it was in the upper 70%, and they told me that even though the technical score was rated as "fair" that it was actually good. This was when I started using bipap.

My last test showed mid 60%. I kept insisting the lower score was due to leakage from lack of a tight grip with my lips, so the RT got me a full face mask to try, but my score did not improve. Nowadays, I do notice a difference when walking, or laying flat and so forth. This STUPID cough that I have is different too, I run out of breath coughing, I have the reflex, feel the need, but can't get the air out. The last couple of nights it's woken me because of this, then I lay awake pondering it LOL.

I do have a question/suggestion about her not walking much. Does she use her cane for strength or balance? I ask because I've found having AFOs gives me so much more freedom and independence. If her problem with walking is greatly influenced by a compromised balance, then the AFOs would not probably be enough.... also, interests to keep her "going"... this puppy gives me lots of reasons to walk outside, and I've really enjoyed the autumn leaves. Its my favorite time of year anyway, but, having to go out rain or shine has been good for my soul, so to speak. In all honesty, a puppy was not the wisest choice, a grown (read: calm) dog would be better for a PALS unless they have a lot of support from others willing to get up during the night, etc.

Your mum is so lucky to have the patient and involved daughter that you are!

BarryG · 11-03-2009, 03:28 PM

rocmg, 84 is pretty good. Mine was at 110% at my first clinic visit and it is now at around 87% two years later. No bipap for me yet and the respiratory tech I saw a few weeks ago said I would probably not need it for a while.

I am so glad that her speech is still intelligible, does she have any electronic speech devices? If not she should get something and get practiced with it before she really needs it because it does take time to get fast and accurate so that you can have somewhat reasonable conversations.

Al · 11-04-2009, 12:08 AM

Mine was around 85- when I needed the Bipap That was in Jan 05. I'm around 44% now and still use the Bipap at night.

AL.

alice3 · 11-04-2009, 01:07 AM

Quote:

Originally Posted by GlenBrittle

I agree , 84% is good.

If it starts to drop , ask about BiPap. When it drops , it takes big jumps. mine was from 81% to 57%.

what is the different between the bipap and the cpap. should all als patients use a bipap. I was diagnosed in feb-08. they gave me a c-pap.

alice3

GlenBrittle · 11-04-2009, 09:01 PM

Hi Alice,

CPAP is a constant pressure. The same pressure whether breathing in or out. Eventually , breathing out against CPAP gets to be work for someone with ALS . Having to work while sleeping takes energy.

BiPap is a combination of pressures. Higher pressure to breath in - helping you breathe , and a drop to a much lower pressure to make it easy for you to exhale. This is much better for someone with ALS.

I can attest to this as I have had both. BiPap Rules !

Glen