Pulmonlogist Appointment Done

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Syekick

Active member
Joined
Apr 20, 2012
Messages
89
Diagnosis
04/2012
Country
US
State
TN
City
Nashville
I saw my pulmonologist today, for the second time, now six months later. My diaphragm hasn't worked in over a year so I have to rely on what's left of the other chest muscles.

The great news is that I'm still holding steady with a FVC of 73. Who knows what the future holds but that means I should be around for several more months.

So I will continue to enjoy any food and favorite foods. I'll continue to smoke a cigar in the morning and one at night along with coffee. I'll enjoy every day and just be thankful I'm still around, in love and loved. I pray the same for all of you.
 
Joe,

Your post made me so happy for you and hopeful for myself. Thank you.
Wondering if you dip the evening cigar in brandy...
 
Good for you! Keep on keepin on!
 
Nice that you got some good news. Keep enjoying those cigars.

Laurel
 
Let's keep hanging in ! !
 
74 is pretty good! So glad you can enjoy your food, coffee and cigars!
Your attitude is amazing
 
That's great news! Keep enjoying every day just the way you are!
 
Hey Joe, that does sound like good news. I admire your spirit. Just keep on keeping on....sherry
 
I've scheduled my first appointment with a pulmonologist for the end of the month. Thought it would be brief as I recently had a test of breathing capacity when I went for a 2nd opinion. But maybe I should expect repeat tests.
 
Yes Bob, in the beginning all my Pulmonologist does is interpret FVC tests so far. Later he'll advise on Bipap and DPS and to vent or not to ven decision making later.
 
Great news Joe! Davidoff fan myself and only with a nice latte.
 
Wonderful news, and wonderful post! I always enjoy reading what you have to say. Your attitude is amazing. 8)
 
As I was recently diagnosed and had my first visit to the ALS clinic last week, can some of you enlighten me about FVC and what it represents. I have tried searching the net to get relative values for age/gender.

My FVC was 99% (which i thought was great!), but when reading some profiles on patientslikeme, I see some had scores over 100%, so now not so sure.

I was diagnosed with spinal als, currently affected areas are my right shoulder and arm with atrophy and weakness, twitches all over.

Thanks
 
FVC is Forced Vital Capacity. It a measurement. You blow into a tube that is about the circumference of a garden hose as hard as you can and you keep pushing out air from your lungs for 6 seconds.
 
@ mbmurray

I'm about to start my third year with ALS.

FVC. Forced Vital Capacity. It comes down to how much air you can suck into your lungs and how hard and long you can blow it out. About 3 months before I was diagnosed I blew a 99% also. However, the reason I had asked for the FVC was that I was having big problems get a decent breath when reclined to sleep. The little county hospital I was dealing with knew about nothing of ALS and even my county nero didn't think it was that big a deal. They did not test me lying down and simply told me my breathing was fine. It got worse in 90 days and went to sleeping in a recliner to having to try to sleep sitting up fully in the recliner. After being unable to sleep on a Fri, Sat, and Sun night, I was faced with making a decision on Monday morning of going to work or going to the ER of a Hospital in Nashville that had experience with ALS. I was admitted immediately, tested, and had my 4th EMG that day. The Dr doing the EMG was an ALS specialist and is my Dr today. He told me I had ALS that day and I remained in the hospital using a BIPAP to sleep until my insurance company approved and delivered my BIPAP at home. I retired from work the following week.

So the FVC results can vary if you are sitting up or lying down and have lost some of the muscles that make your lungs exhale and inhale. As the FVC drops while sitting upright, many of us have to begin using the BIPAP 24 hours a day. That is why they continue to do FVC tests on us to see how we are doing.

Other PALS probably had different experiences before getting their BIPAP. Hope this helps.
 
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