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!

 

 

Three More

Three more alpha-1 antitrypsin infusions since my last blog. I got number 13 Saturday. I really did not want to get my infusion this weekend. The last 2 were no big deal. Just set up, needle in the vein, sit for an hour, done. But Saturday I just didn't want to do it. I didn't realize it was my 13th time until I counted them up for this blog. I do not like the number 13. Maybe my apprehension was my subconscious letting me know it was the 13th time.

In attempting to find my vein with the needle and get the IV dripping into my body, Bob had to give it about 4 tries this time. "I don't know how heroin addicts do it." That made me laugh. After my infusion Saturday morning Bob and I watched TV for a while, then I took a nap. When I woke up I had a lot of difficulty breathing. Then I got a major headache. I'm telling you, it's that 13 thing. :( 

Today is Monday and I'm feeling much better except that I haven't been sleeping well.That's pretty much okay since I can rest as much as I need to throughout the day. I'm thinking the not-sleeping-so-great is probably because it's December, not my favorite time of the year. Too many things haunt me this month. Some days it's all I can do to stay just this side of sane. Some moments I cross the line, but I have crossed that line enough times to quickly recognize where I'm headed, and I drag myself back to sanity, though admittedly not always willingly. And there will be times this month that I will give into it and cry and sob and miss my Amy and attack myself for not being able to save her. But not today I think. Today I feel better just writing about it. 

As a fellow COPD blogger put it "depression can and will slip in without notice, and without caring what it does to you." And I just want to add to that very insightful comment "or what it does to your loved ones." I try to hold the darkness at bay. I have learned many tricks over the years to keep it away, though at times I hear it knocking. Ugh, go away. GO AWAY! And sometimes when it gets in anyway it ends up rocking me while I cry and then sleep, and it slips out quietly in the night. Depression has not taken me over completely for a long time and I intend to make sure that it never happens again. 

This is a long and wandering blog. Thanks for letting me share with you.

Thanksgiving Infusion of Love and Antitrypsin

So my blog is up-to-date to the Saturday before Thanksgiving, November 17th, 2012. Infusion of antitrypsin on that day went fine. As long as we find a vein and the medicine drips into my body I think we did a great job. So far no scary reactions, although we do have 2 syringes full of epinephrine (like the one in Pulp Fiction) just in case. Bob always asks if he gets to (I mean has to) stab me 3 times if something goes wrong. Hahahaha, no. And where is the Sharpie for drawing the circle to stab inside of?

On Monday, November 19th, Brad, Jeffer, Joni and grandkids came to rock our world for 2 days. It was wonderful! Mickey waffles plus yummy omelets for breakfast. Bob's famous ribs for lunch. Lots of fun and lots of love. Four-year-old Elliot and I were outside playing. He was showing me how he walks really fast. "Everyone needs to walk really fast," he explained. I said, "I can't walk really fast anymore." He came back to where I was and grabbed my hand and said "Everyone but you Gotu. You can walk however fast you want."

Thursday Frank came up and brought Thanksgiving dinner for the 3 of us. The kids were at their dad's that day. It was yummy and very nice. After Frank left I felt completely exhausted. I don't cry too often, but I laid on the bed and wept. We still had one more family party - Friday morning brunch. I just kept on crying. Friday morning came and I decided I wanted to go to the brunch. I was still pretty tired but figured I would just sit home and be sad if we didn't go, so we went to Merced and met the West Coast Hutchings for a delicious brunch at Bella Luna. It was so great to see and hug everyone. Another roomful of love and fun and delicious food.

Home again by 2 p.m. Worn out but very happy. I slept for about 12 hours Friday night. Nice. 

 

Alpha-1 Antitrypsin Augmentation 8 & 9

I guess it's only week 9 of the infusions. Then it's probably okay that I am still getting used to this way of life. Pretty much every night I dream that I am running somewhere. Last night it was to Luther Burbank Elementary School. :) Then I wake up.

I want to write today to just put my feelings and insecurities outside myself.

Sometimes I am very scared. What is this disease doing to me? I wish I could see inside my lungs every day so I would know. Is it continuing to eat up my lungs? Are the IV infusions slowing down (maybe even stopping) the progress of the elastase? I go in January for more tests, so I will have to wait until then to find out the scientific answer. Until then I will continue to do what I think I can. My inability to breathe will let me know when to stop.

I have joined an online group on Daily Strength. It is a bunch of people with COPD and emphysema who talk (type) about what they're going through. We support each other and answer each other's questions and listen to each other's frustrations. It is interesting to me that people I have never met face-to-face, and probably never will meet, have become such a part of my life. The fact that I do not know the parts of their life that aren't shared online, and that they don't know mine, is part of what makes this feel like a safe place to me. We are respectful of each other. We don't talk politics or religion. It definitely helps me.

Sometimes it helps me because my questions about the disease are answered. Not the answers you can look up on COPD.com, but the answers about how it feels. The anger, the self-blame (mostly all previous smokers), the love for life, the pain of the disease. We have lost 3 members to this deteriorating disease since I joined (about 4 months ago). It is sad. 

Back to why I even introduced my group. One of the members wanted to know what would happen if they just kept on going, doing what they wanted/needed to do, as in running, or vacuuming, or cleaning the garage, or hiking in the mountains, or swimming in the ocean. Would one just keel over and die right there? The real answer is, you can't breathe. You have to stop. But I liked the question. Because that is what I dream about. Running and running and never stopping. 

Infusion #7

Well, we're definitely learning as we go. It doesn't seem like the IVs are a great big huge deal anymore, but they're still a big deal.

We bought a set of plastic drawers to keep all our medical supplies in. Bob is so organized. He labeled the fronts of them with the stuff that's in each drawer. It makes it easier to know when we're running out of stuff and how much more to order. A very good idea. A very smart husband.

Sometimes Bob finds that vein the 1st time, and that is really nice. This week it took about 8 tries. Ouchy. We bought Mickey Mouse bandaids so it wouldn't hurt so much. They really work!

Haha, remember I was going to keep track of how I feel and stuff after my antitrypsin infusions? Well, that isn't happening. I made a chart and filled it in for 2 days in a row. That was about 2 weeks ago. I just don't like doing that. I'm not a charter. Even when I was getting paid to chart stuff, ugh, I hated it. 

I do think the antitrypsin is helping me. It seems like Mondays through Thursdays are higher energy days. See, this is why I need to chart. Then I would know. We do the infusions on Saturdays. Sundays are football days, so they don't really count. Unless I get super excited about one of the games, Sundays are not high energy days. Monday, Tuesday, Wednesday, Thursday usually are good days. Sometimes I even climb on my treadmill and go for a while. That helps. By Friday I am getting tired. I don't know if it's psychological or physical. I'm going with physical.  

We'll keep this going. I'm glad that my husband is the one that puts the IV in me. I totally love that man.

Infusion #6

This week the IV of antitrypsin went well. It was Bob and I. It was pretty quiet and it took about an hour and a half to get everything set up and drip the medicine into me. Drip, drip, drip. 

Feeling better. Breathing better. I guess the antitrypsin is working. I still can't get too carried away. But losing my breath is one way to know that it's time to stop, since that's all I am capable of doing. Stop, breathe. Okay, move again, just not so fast this time.

This breathing better is helping me to feel happier.

Infusion #5

Phew, glad that one is over. Frank (father-in-law) was here. He brought me a very cool homemade armboard to help keep my hand still. That way the needle will stay in the vein instead of poking through it. Bob took 4 tries to find my vein. It hurt a little. But other than that all went smoothly. I think it's getting a little bit easier. Plus Frank brought us yummy sandwiches.

I am going to start keeping a journal about how I feel and how much energy I have each day. I'll keep it simple. I'm curious to know if the alpha-1 antitrypsin is helping me feel better. I know I'm not feeling worse, but I think it's time to record it.

Sunday we went to Yosemite Lake and played with the kids and grandkids and Aunt Jilly and Grampa Frank. It was a beautiful day, and we had a wonderful time. It was also Amy's birthday. Happy birthday baby. I love you. Her Pooh bear from Disneyland still sings, 20+ years later. That is so comforting to me.