Hello Blog. It's been a month and 4 antitrypsin infusions since I've written. Amy's death day has come and gone for another year. And Joan's. And Christmas. And I can almost breathe normally again, except for this stupid disease.

The infusions have been pretty mundane, except it took Bob 12 sticks last time. My hands have needle tracks and bruises on them. Two of those sticks caused infiltration of the saline, one on each hand. That's a very strange look. Two liquid bumps that form immediately. It doesn't hurt except for the extra needle prick. I'm not complainin', just sayin'. I would rather be here at home with my husband than anywhere else in the world.

We got to spend some time with all the kids and grandkids at Christmas. Joni and Rooney went with the kids' dad to Utah and Jeffer brought the boys up here for a night and a day. We had a wonderful time! Elliot (4 years old) taught me how to play Portal 2. Logan (9) and Bob were watching us play. Portal is a puzzle video game. You have robot avatars and you work together to find your way around and through different rooms to get to the transporter to zoom to another level. You shoot holes in the walls to go through, push buttons to drop stuff, and run around. Elliot and I mostly ran around. Logan and Bob were trying to help us. Go right, now go left. Jump on the button. Shoot a red hole in that wall. And we would just keep running around and diving into the acid pool. We were laughing. Logan and Bob were not. Logan said "Argh, it's torture to watch you guys play." Then we had mickey mouse waffles and everyone was happy.

I just want to encourage family members to think about getting tested. I'm not sure what it would change if you found out you are PiZZ. Living a healthy lifestyle and staying away from smoke of all kinds - woodstoves, barbeques, cigarettes, toxic fumes - is about all you can do to keep it at bay. Then I suppose at some point the infusions would start. I'm not clear on how much longer of a life the infusions offer. I've read a lot and basically they don't know either. For me, it seems like I am staying steady. I don't think I'll get better but I don't think I'm getting worse. Quality of life becomes an issue. A lung transplant is a possible option. I haven't thought much about it. One of my advocates had a double lung transplant at 50 years old. Here are two short interviews that John gave following his transplant.

http://www.youtube.com/watch?v=zdDBL6iflKE&feature=plcp

 

http://www.fox5vegas.com/video?clipId=7963332&autostart=true

Another of my advocates is a young mother of 3. She gets the infusions each week. Her husband gives her the infusions. She's been getting the infusions for a couple of years now.

There are sites you can go on to order the tests to see if you are an alpha-1. They send you the test kit, you take it to the doctor. The doctor pokes a little hole in your finger and squeezes some blood (about 4 or 5 drops) onto a cardboardish plate. Then the doctor sends the test to a lab and you get the results in about 2 weeks. The tests are free. I can order them for you, and I would be happy to. All the sites say they keep your information private. If you order them yourself, let them know you have family members who are Alpha-1 antitrypsin deficient with genotype ZZ. You can use my name if you like. I am signed up with some of the alpha-1 groups on line. You can go to these sites and request a test kit.

Alpha-1 | Alpha Test® Kit

 MUSC - Alpha-1 Foundation - Alpha-1 Research Program

This is not to scare anyone. The thing with this disease is that kind of all of sudden you can't walk up the stairs anymore without getting short of breath. And it doesn't make any sense to you. Then you notice other things like lifting heavy objects or hiking in the mountains also leave you short of breath. It often starts affecting you in your mid-thirties to early-fifties. It hits everyone different. It doesn't affect just smokers. It affects everyone who has the bad genes. Just to be aware of it is helpful I think. 

Anyways, I love each one of you so much. Happy 2013!