COPD & Emphysema Support Group

COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...

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antitrypsin infusions continued

deegran
deegran
Good morning and happy Sunday (football day at our house). Update on my alpha-1 infusions. Still getting them every Saturday. Still hate the whole IV thing, but I find myself looking forward to getting an infusion. I'm finding that I have more energy during the week and by Friday I am tired. Haha, I really should chart this stuff. I did set up a chart on excel and charted for 2 whole days in a row. That was like 3 weeks ago.

Anyways, I think the infusions are working in that I'm not getting worse that I can tell.

I also hate the IVs because they remind me that I have this horrible disease. I know it could be worse. I realize all that Pollyanna-ish stuff, and I am happy to be reminded of it. But sometimes I still hate it.

Let me end on a happier note. Thank you all for being part of this group. You have become part of my life and I am really glad I found you. Hugs to all.
deleted_user
deleted_user
Good morning and happpy Sunday to you. The whole routine necessitated by the diseases we have is a pain in the butt. Whether it be the infussion, inhalers or my Kenalog. Like you, after my shots(every two weeeks), I am really pepped up. by the Thursday before my shot I'm really sragging.
I've managed to stay faithful to keeping a spreadsheet of my vitals during exercise. It really helped me to convince myself that I needes to go to my doc to reduce the interval on my shots from 3 to 2 weeks.
Going under with this disease is easy. Gotta stay tough to not let it rule your life. You're doing darn good at it...

Hugs,
Dennis
higginsp
higginsp
Sorry to sound ignorant, but what is the alpha-1 infusion? Is that something everyone eventually receives? Also, what is Kenalog? All I'm taking right now is Spireva and Albuterol (in an emergency), so I don't know much about the different treatments for this disease. I've figured out that I will eventually need an antibiotic and a steroid, but don't know much more than that. Thanks for the info!
deegran
deegran
Higgins, you don't sound ignorant. I have a hereditary component to my emphysema. It's alpha-1 antitrypsin deficiency. My body makes pretty much no alpha-1 antitrypsin. It is a protein needed to protect your lungs. So I have to get an IV infusion of that protein once a week. My husband does the dirty work and we do the infusions in our home. So, no, not everyone that has emphysema will receive the infusions. My doctor teases me that I am very special. In 20+ years of pulmonary medicine he has only had 2 other patients with the PiZZ antitrypsin deficiency.

As to the Kenalog, I'm not really clear on what that does. I thought it was for allergies? Dennis can answer that better than me.
deleted_user
deleted_user
Dee, the infusions are like sweet and sour, together (the infusion and your body) they work well. And give you positive feedback. But the process reminds you of why your in this. You have been doing great with your happy thoughts, and that helps you get over these humps. Keep it up. And take care. -- Bill