ALS clinic Friday.....

[pvale]

Wow, what an experience. First time at a clinic. Saw a lot of people. Bad news is FCV is down, 66%. Bummer. Looks like the time to figure out if I am going to be able to trache and vent isn't real far down the road. Talked seriously about a PEG. Told me I should get one earlier rather than later. Maybe get it scheduled at next clinic in a couple of months.
I'd better be getting my will updated, been putting it off. Upcoming move is going to stressful, and better happen soon, or it's going to be too late.

Don't let my rambling rant stress anyone out, just bummed out is all. Not even close to ready to die yet.

Perry

 

[halfin]

Hi Perry, sorry you got some bad news there. Those clinics tend to be a little "TMI". They are always looking ahead and trying to prepare us for what is coming next, so it is not usually what we want to hear.

Like Joel says, if you can manage the trache/vent then that should put off death for quite a while. Just depends on if you can live like that and have the support you need. I hope you are able to come up with a solution that works for you.

 

[indigosd]

Perry, do the PEG ASAP! It will help soooo much. Are you using BiPap or Cough Assist yet? Get one! You are a long way from the trach my friend-there is way more life adventures in store for you :] hugs, kay Marie

 

[irismarie]

By your side, friend! Squeezing your hand as hard as pos. Breathing in rhythm with you. Loving you
Iris marie

 

[Ratman55]

Hey Parry, you can do this thing. Just hang in there buddy. We are all with you.--JK

 

[BarryG]

Perry, sorry about all the bad news at the clinic but I know that you will be with us for a long time. As someone who has had a PEG for exactly one year now with really no problems I highly recommend that you get one a soon as possible. I hope your move goes smoothly and soon.

 

[paleshia]

bummer about your numbers...let's here it for a long plateau!

 

[handinhand]

Morning perry, sorry to hear about your Dr. appointment. I know how you can come away from them very upset? So much information to take in all at once. We are all here for you.. You will never be all alone. big Hugs, l

 

[indigosd]

Perry, how are you and the wife today? hugs, Kay Marie

 

[rose]

Perry,

Clinic visits can be stressful. Its not their goal to make us feel that way, just to urge us to be pro-active. I'm sorry your numbers weren't good, but sometimes it even has to do with the particular person who does the test with you.

Good luck with the move, maybe just let what they advised you kind of sink in, without expending too much mental energy actively thinking about it, as you have so much else going on right now.