Dee, your doing great, just remember and use that infusion time as quiet time for you. Just sit back and relax, put your feet up, and smile. Because you know some good is coming from it, good that you might not get otherwise. I know it's a pia, but in the grand scheme of things it is a little pia. We support you and are happy your are getting the treatment. -- Bill

deegran, one of my favorite sayings is, "Things turn out best for those who make the best of the way things turn out." Anything that might slow the progression of this nasty disease has to be something to smile about. Hugs to you.

I agree with Bill & Imarighter, this is a wonderful thing for you. Just relx & picture it doing great things in your body!!!

Dee, I understand your anxiety about this infusion and the thought of having infusion weekly for the rest of your life is a little unsettling.

It is replacing the missing protein that while not a cure does help protect your lungs and that is the focus. I don't know if you have a pic line or even if the doctor has discussed this early on but it would replace the weekly needles and that could make it more comfortable for you.
I am so hoping that this goes well for you and that it becomes a valued treatment for you.

Please keep us posted as I believe this is the first time we have had an infusion patient walking us through this treatment. At least not that I can remember.

The very best to you.

I've not heard of this treatment before, is it new?

I AM BOTH CURIOUS AND HIGHLY INTERESTED IN THE INFUSIONS THAT YALL ARE REFERRING TO.LOVE,PRAYERS,AND HUGS.MJ

Best wishes to you, and just know with each infusion you are doing a good thing. Talk everything over with your doctor, in order to feel a bit better. I agree with all that was said here, and also about the pic line.
Keep us updated, so we can follow your progress with you
BJ

I've heard of others with the Alpha-1 deficiency, who have had to go through double lung transplants and/or liver transplants. You are SO lucky that this infusion therapy is now available so that, hopefully, you won't have to go through those awful surgeries. This is so much better than being on anti-rejection drugs for the rest of your life.

I also think you're the first person on this forum to get this therapy. please keep us informed as to how it's going, because I just know you are giving hope to many others.

You're doing just great! Hugs, Sue

what is this???

Glad to hear you are getting the help you need. Best wishes and like Bill said. Just a little pia!

Curt

The FDA-approved therapy for the treatment of Alpha-1-related lung disease is generally referred to as augmentation therapy. Augmentation therapy is the use of alpha-1 antitrypsin (alpha-1) protein from the blood plasma of healthy human donors to supplement or augment the alpha-1 levels circulating in the blood and lungs of Alphas diagnosed with emphysema. The therapy is administered by a weekly intravenous infusion and, until other therapies become available, is considered ongoing and lifelong.

This is also new to me. At least theres something out there to help now. Best of luck with ur treatment.

Thank you Kate for the info.
you will be in my prayers dee.
God bless

thank you so much I was looking everywhere but really not knowing what to look for. so this doesnt help people with copd??

Sorry I left so many questions unanswered. This does help with COPD that has a hereditary component. I got the bad genes. Since I don't make very much alpha-1 antitrypsin on my own they stick other people's into me. I am very grateful for those that donate blood.

Thanks everyone for the support. I like what Denise said about sitting there and thinking about all the good it is doing me.

I totally love this group!