Old 08-05-2015, 03:34 PM #1 (permalink)
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Default Clinic visit

well I have a clinic visit Friday, and I'm really worried. I can tell my breathing has deteriorated markedly- when I inhale I can't even exhale for 5 seconds.
Also my left arm is useless now, but I'm really scared how fast my breathing is going. Makes me think I don't have much time left.
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Old 08-05-2015, 03:41 PM #2 (permalink)
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Default Re: Clinic visit

Big hugs Neil - the breathing is scary stuff.

What worries you about the actual visit to the clinic?
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Old 08-05-2015, 04:10 PM #3 (permalink)
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Default Re: Clinic visit

During a clinic visit in March 2011, when my hubby asked one of the RNs, she said that he has about one year , plus or minus a few months, to live. Hubby is still here.
One thing I will emphasize though, you have to be absolutely honest with your answers to their questions about your symptoms. They use the test results and what you say to come up with whatever recommendations, etc. I think in my hubby's case he was not always forthcoming with his answers. So the nurse based her comment on what she thought was a sudden rapid decline, at least that is what I think happened at that time.
Good luck with your visit.
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Old 08-05-2015, 04:54 PM #4 (permalink)
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Default Re: Clinic visit

The mop and fvc tillie. I know they are going to be bad. And I know I've declined rapidly this past 6 months. They refuse to answer how much time you have left if you ask them, but with bulbar onset and breathing and lung problems, it doesn't take a genius to see the obvious
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Old 08-05-2015, 05:01 PM #5 (permalink)
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Default Re: Clinic visit

Neil I understand how you feel, I have fears about breathing and I'm bulbar too, I am over two years into this, can't hold my breath at all, I figure when the time comes I will know.

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Old 08-05-2015, 07:01 PM #6 (permalink)
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Default Re: Clinic visit

Neil, while steve's fvc is ok, his.mip and mep have declined a.lot. a.year ago his.cough measurement was 300. In June it was 110. . His cough is a lot weaker. But we just keep doing the best we can. You can't deny it but you have to enjoy all you can.
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Old 08-05-2015, 10:16 PM #7 (permalink)
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Default Re: Clinic visit

I was diagnosed with breathing onset; 130% FVC in November 2014, 64% last week. In February 2015 MIP was normal last week 40%. I think the good news is that I will still have the use of my arms, hands and legs when I die, even though they are much weaker. Something to be thankful for. A lot of you do not have it so good. Sorry Neil, and all the rest, that you have to go through this.
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Old 08-05-2015, 11:57 PM #8 (permalink)
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Default Re: Clinic visit

I understand how you feel, Neil. We are in this together. My clinic appointment is tomorrow, but I already know that my FVC has decreased 35% in just four months. I'm failing in other areas as well, but it's the breathing that's the hardest to take. I'm hoping your numbers won't be as bad as you think they are.
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Old 08-06-2015, 12:11 AM #9 (permalink)
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Default Re: Clinic visit

I will be praying for you Neil.

The decline is often not linear. In my case, FVC dropped to 30% pretty rapidly but the decline has slowed way down since then.

I will be hoping for the best for you. Let us know what you find out.

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Old 08-06-2015, 12:37 AM #10 (permalink)
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Default Re: Clinic visit

Will be thinking of you, Neil, and wishing for better-than-anticipated results. My guy will be in Friday, too, and I know that foreboding feeling of waiting for the number. But the bottom line is that the numbers don't tell the whole story. So hope you can rest well before then. Will keep you in thought & prayer. Let us know how it goes. Hugs!
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Old 08-06-2015, 06:04 AM #11 (permalink)
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Neil, you are in my prayers.
God bless , Janelle x
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Old 08-06-2015, 04:04 PM #12 (permalink)
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Neil xxxx

Sometimes, even though they are only numbers, seeing those numbers drop and having someone talk about those changes is confronting. Think of your tree, and of all us holding on to you while you are there. That awfully hard IIWII will simply be described by them there.

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Old 08-07-2015, 10:07 AM #13 (permalink)
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Stalker you give me hope, hopefully Neil will feel the same, thank you.

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Old 08-08-2015, 02:31 AM #14 (permalink)
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Quote:
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Stalker ...
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Old 08-08-2015, 10:55 AM #15 (permalink)
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Default Re: Clinic visit

Hey Neil,
Been thinking of you.
Hope clinic didn't create too much anxiety for you.
God bless, Janelle x
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