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Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
It was a long day but we survived our first and most probably last ALS clinic visit at the VA in Charleston. We met some very nice and knowledgeable doctors and nurses and recieved a ton of great information. We have help on the way to lighten the load a little more. Now for the bad news... They estimate dads lung function to be about 18% and told us there was really no need to put him through having to make the trip back. More or less the goal now is to make him as comfortable as possible at home from here on out.
 
Sad to hear the bad news. I wish you good luck with providing him comfort.
 
>Sad to hear the bad news. I wish you good luck with providing him comfort.

Ditto that!
 
Because I had lost 60 pounds in 15 months, the diagnosing neuro gave me a short time to go last December. I turned that around with a peg tube, and expect to go awhile yet. My last lung function test was better than the prior one, maybe due to Respironics Cough Assist.

I hope he can have some quality time yet.
GB
 
Glad he had a good visit. Hope the docs are wrong for awhile anyway.
 
sorry it seems to be going so fast with your dad. no one has an expiration date on their foot, take it a day at a time. that is what we do already.
 
I am so sorry. It's good that help is on the way and I hope you have good quality time ahead. The way this disease changes pace, you just never know--you might have more time than they think.
 
You have done so much for your dad this year, and you've known his breathing was declining and what it all meant. Now they've put a number on it, not a good number, but you know that it matches what you've been living with.

I hope you and your mum can manage now to give him lots of comfort and quality, for however long that is. I never like them putting a time frame on our PALS, and yet there is no point them just 'being positive' in the face of reality either.
 
My husband has been below 30%, the threshold for respiratory failure for several months. He has been below 20% for 2 months. We have take small trips, seen lots of family and greatly enjoyed life. These have been some of the best weeks and months he ha shad in a long time.
 
Gooseberry, attitude has got to be a big factor in your enjoyment of life! Keep it up, both of you!
 
Grumpy and I were told his number was 27%. As scary as it is, it also validated what he had been feeling but was afraid to tell me. The Trilogy has made a huge difference for him.
I am glad to see that the VA is providing you with support, it has been the same with us. They have gone out of their way to help.
Your parents are very lucky to have you! Your strength is amazing and I will be thinking of you and of them.
Kaye
 
Thanks for all the kind words everyone! We definitely aren't throwing in the towel and giving up, but instead trying harder to make the best we can of each day and keeping him as comfortable as we can. He is pretty much immobile and it wears him out quickly to do anything but that doesn't mean we can't go days at the house with visitors and family coming by and so forth. We are building a team of love and help to get through this thing and moving forward the best we can. I was able to get a break this weekend and take in a concert and go to the beach for a couple days. I am back now and ready to jump back in it. Mom heads out Thursday for her mini vacation at the beach and I am going to hold the fort down.
 
The docotrs were very kind and did not attempt to give us but a basic idea of a timeline but said he has seen some great stories and you truely never know. The only hard number he gave us was the respitory numbers. It definitely wasn't like a complete surprise. We definitely knew they were going to be bad just not exactly how bad.
 
That's fantastic, a concert and the beach and some time off!

You guys are getting this sorted so well to be sustainable for you all while you care for your father. You've all come a long way.
 
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