Clinic Day

[mpnatx]

I have Clinic all day in San Antonio tomorrow. I'm beginning to dread going there! Wears me out. But, at least I'll know where I stand.
Marty

 

[gooseberry]

Good luck Marty. Steve goes Friday. Its Never good now. Max said one time it is simply a measure of your decline or progression. I agree with him.

 

[lgelb]

Hi Marty,

I hope it's a relatively smooth day. Try to pace yourself. Since you're a patient, not a number, ask for whatever you need, whatever the tests/agendas say. Don't be afraid to ask that what you don't need falls by the wayside to make time for what matters.

And as a general reminder for others, you only need to go when you want to, and/or there's something important to do. For example, PFTs can be done at any hospital and at many general clinics, if ability to seal is not an issue. And once you start BiPAP, they are more a "fill in the blank" than of prognostic value. If you're near a clinic and like to go, great. But that's not always the case.

Best,
Laurie

 

[mpnatx]

Went to the Clinic yesterday. Weakness progression a little. What I'm concerned with is FVC. 11/14 86, 3/15 81, 8/15 58, and yesterday 1/16 was 45. Looks like it's steadily going down.
Marty

 

[BlueandGold]

I understand Marty. I'm dreading my 1/26 clinic visit as I know my FVC has dropped significantly since October 2015 when I was at 68%. However, remember SWalker's post; his FVC dropped to 30% and it has stayed there for a year and he seems to be the most active pals on this forum! I for one hold on to that. Nobody knows our time and that's a fact. To hell with the numbers.

Vince

 

[Nikki J]

Sorry Marty. Vince is so right about numbers though. Praying you will stabilize ( and remember the numbers can vary a lot depending on fatigue, when you ate etc)

 

[mpnatx]

Thanks. Just another glitch in the road.
Here are my results. I'm not familiar with the other numbers besides FVC. But it looks like they all went down. Laurie knows!
Marty
https://www.alsforums.com/forum/attachment.php?attachmentid=7158&stc=1&d=1452208251

 

[affected]

Sorry about those breathing results. Steve is a shining light I agree on how those numbers don't mean everything. xx

 

[lgelb]

Yup, and Marty, [and Vince, in advance] that's all I'm going to say about it -- your numbers went down. Now, when else other than clinic are you going to choose to breathe like that?

Where you are, is way more important. If you are on BiPAP, as comfy as can be, getting out when you can, with whoever you want to be with, managing mucus, getting nutrition/calories and deep sleep, those numbers don't mean a thing.

If you aren't, focus on those things -- the variables that frame the quality of your remaining life, however long.

My husband was about where you are three years before he died, three years that he lived to his fullest [I did not say, your fullest or my fullest, but his]. Just plan to do the same for whatever there is.

I balanced all, brought all to mind,
The years to come seemed waste of breath,
A waste of breath the years behind
In balance with this life, this death.
--W.B. Yeats

 

[Ells]

I’m also firmly in the “numbers are merely numbers” camp.
My PFT results are rubbish, but they make no difference to my daily life. What does make a big difference is, as Laurie says, good sleep, being well fed & watered and bowels that work

 

[gooseberry]

Steve had clinic today Marty. Quite similar results but you know what, he is planning a trip to San Franscisco and Seattle in June. He asked if I could look for equipment we would need out that could be rented.

Dont limit yourself unless that is your choice. You surely have more joy to be experienced and adventures just waiting for you!