What is COPD Emphysema
Chronic obstructive pulmonary disease (COPD) is an umbrella term for a group of respiratory tract diseases that are characterized by airflow obstruction or limitation. It is usuall...
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Many of you already know I've been diagnosed with Alpha1 Antitrypsin Deficiency. My phenotype is an SZ which is considered in the moderate range. I've been told I should make arrangements and plan to have the weekly infusions. These weekly infusions cost anywhere from 80,000 to 100,000 dollars a year. I doubt seriously that Medicare or my supplemental BCBS would keep me as a policy holder very long at that rate. I have read medical journals till I'm blue in the face trying to educate myself on this genetic defect. Some say an SZ being only moderate may not constitute infusions. Some say otherwise.
As of now I am not on oxy. or nebulizer for breathing issues. Since the Histoplasmosis seems to have gone away I am having no further problems breathing and going on with my life. So what do ya think? Just throw it out there. ;) I'm thinking about waiting at least one year and getting another specialists opinion. I have been quit smoking for ten years but yes I do have some emphysema. I just can't take a chance on losing my medical coverage or paying a whole lot out of pocket for the infusions. I am to have another CT scan in 6 months. Linda Posted on 11/03/09, 09:11 pm |
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Linda,
I wish I had some really profound advice for you - unfortunately, I don't. I hope someone else may be able to give a better answer. To me, you are faced with a choice no one should have to make. I do hope your health will stabilize and that the infusions aren't necessary. Best and prayers for you. Joni 
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Linda
Did you talk with someone from the Apha-1 Foundation? I know their genetic counselors number is 1-800-785-3177 maybe they have some insight on this. I'm sure you also have checked into this site http://www.alpha1.org/ and their drug resource page. I only tested positive for the SS genotype ( low risk) but since it makes me a carrier I'm still trying to get more information and get my kids tested also. Hugs and hopefully someone can answer this for you. Lisa
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Tex,
Didn't know if you knew or not but DS has an A1A Support Group! Hope they can help you better there. It is alot different than Emphysema and much more aggressive! I believe Bridget3 has it also but haven't heard from her in awhile!
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Hi Linda,
The person that might be able to give you some answers on the Alpha1 Antitrypsin Deficiency is windbag (Lisa)she had a double lung transplant in April,think it's a good idea to get a second opinion on it before you decide anything.Good Luck. Hugs Ellen.
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Thank you all for your replies. ;) And Lisa than you for that phone number and the website. I have been to that website and read a lot. I went to their message boards too but not much going on there.
I've gone to the AAT site here on DS too and it is like dead. Nobody talking at all. I do plan to get a second opinion. My hubby's doctor is a Hematologist and I am going to talk to her in two weeks and see what she thinks and maybe she knows another Pulmonologist I can go to for a second opinion. She is very very smart and I always value her opinion. Thanks again! Linda
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