@nancyjac I'd read over all of the info on the Alpha-1 website and formulate your questions from that. Good luck on Thursday at your appt.

@nancyjac Nancy, I would ask if the type of Alpha deficiency is affecting your lungs, or your liver, or both. You obviously already have lung issues, so, hopefully they can keep that in line. Ask if your levels are low enough to require infusions. I am hoping that they tell you that you are at a stage where minimal maintenance meds are all you need. Please keep us posted on what your dr says. That way we can better help with the info you may need.

@windwalker I will definitely ask the connection question. To my knowledge I have never had liver issues.

In the last couple of years I've experienced more difficulty exercising - feeling worn out way too easily. Now I don't have the stamina to play tennis and I'm having more difficulty even attempting to play golf. I've attributed "my tiredness" to having had radiation for B-Cell Non Hodgkin's lymphoma. I am now having difficulty walking up even the slightest of inclines. Almost over night I can no longer go up a flight of stairs without having to stop at least once to rest and then I have to practically pull myself up the last few steps. I've had some heart problems and two weeks ago I underwent a stress test. I've passed numerous stress tests before - gone 10-12 minutes without a problem. This time I only lasted 3-4 minutes. Almost immediately my blood pressure skyrocketed to 206/70 and they stopped the test. My EKG during the test was normal. Their diagnosis was "exercise induced hypertension." My chest was tight and I had the usual difficulty breathing. My legs were very weak - I thought they were going to give out and cause me to collapse. It sounds like what they thought might be heart problems might actually be the Alpha -1? It's as though it came on over night. Is it common for Alpha-1 to come on this quickly?

@nancyjac, I cannot answer the question about how rapid your disorder is coming on. Have you Googled the subject or visited their website? Also, you can start your own on-line support group for Alpha-1 on Connect. That way you cam get feedback from people who actually have it.

Alpha1 can start to affect you at varying rates.
I’d ask him how quickly you can start receiving Prolastin-C infusions.
If you can’t afford it ($130K/yr) contact these three places that offer financial assistance:
NORD
The Assistance Fund
Accessia.