It took one month, but we finally got all our i's dotted and t's crossed, and I had an infusion of Aralast last week with another one scheduled for tomorrow. It looks like we'll be okay with Baxter's help and generosity until 2014. Baxter is the pharmaceutical company. The Affordable Care Act sounds as if it will help me continue to get my infusions. We shall see.
So, do the infusions make a difference? I think so. They are supposed to slow down the degradation of the lungs. The infusions do not make me better as in restoring my lung function. That is gone. We are attempting to keep my lungs where they are for as long as we can. My pulmonologist feels like I'm doing pretty good. Oh, so that's what this is. He says things like "At least you're not on oxygen," and "you still get around on your own." When he says these things I feel like I need to be stalwart and strong, but I don't always feel that way. And he has seen others who are in worse health than me and I totally realize that. And I am happy for the health that I have, and especially I am happy for the health that I have had for my whole life. He only has one other patient with the same exact disease, but lung disease is not good no matter what the etiology is.
My weeks off the medication were not great, but I couldn't tell for sure if I was losing more lung function. The infusion did brighten my mood for sure. I don't think that was an effect of the drug but more a feeling of hope that I'm not going to slip away too fast.
This disease is quite troubling to me. I don't know how much to push myself. I guess I could just keep going until I can't breathe anymore and then stop for awhile and catch my breath. Actually that pretty much happens every day anyway. And yes, it does suck. Yesterday I was saddened by the fact that talking to my sister on the phone for 45 minutes, while sitting on the couch, left me completely exhausted. Arrrrgh.
That's enough of that. My personal pity party is officially over this morning.
Yay for summer! We set up our above ground pool and go out and dip in it pretty much every day. It gets hot in these here foothills.
Elliot turns 5 in June. We are having a party for him at the lake. I am really excited about it! He wants an Angry Birds theme. And definitely a pinnee-yata with lots of candy inside it Gotu. (Gotu is my grandma name = goddess of the universe). Of course Elliot, anything you want. Haha. Those grandkids put a smile on my face just thinking about them.
P.S. Wow I wrote this a while ago and never published it. Before Elliot's party, which was a big ole blast!
Dee, Soft smile, the party is never over. There is on going on all the time, we just have to decide what kind of party it will be. I know the feeling, even the need from time to time to have a pity party. Then I look around and see signs it could be worst, or I could have an ailment that is even worst, so I move away from the Pity Party.
ReplyDeleteGrand kids are a damn fine reason to move on to a new better party. And knowing from your DS journal you made the best of it.
I know the positive impact your infusions have on you, just as you know the impact mine do on me. I would say that even though you were off your infusions for a few weeks, I don't believe it made or changed much of what is going on in your lungs.
Again, because of our ongoing relationship on DS I know you are back on infusion track. I know you have done the happy dance a couple times, and I really enjoy seeing you doing and being happy. Happy is the best combat for what ails us. Our attitudes is what carries us thru the rough times.
Please take care my friend, Bill
PS, When you post on this blog, please do me a favor, and give me a little poke in the ribs over on the DS. Thanks !!!