Passed? Failed?

The first Lung Function test I had was easy peasy. Basically I had to breathe into a plastic cylinder hooked up to a big machine several times, sometimes normal breathing, sometimes blowing out hard and fast, sometimes sealed in a chamber, sometimes sitting outside of it. There was no albuterol, nor other drugs to affect my breathing so I didn't have to worry about being turned into a shaking pile of Jell-O after the fact. The tech was very sweet. We chatted about kids, marriage, mothers, and everything in between. When the test was over it seemed like I didn't have COPD or emphysema--which is awesome--but I guess we'll see. I grabbed a salad from the hospital's cafe. And man, I hate eating alone. Like really abhor it. It's not so bad when I have something to read, but when I don't and I have to just sit there staring at my food, or the table, or the wall...well, I get lonely. So I inhaled the surprisingly tasty chicken and greens then found a comfy couch to hang out on and played my DS while I waited for my next appt. Yeah, I have a DS. A pink one. I played Sudoku...love that game.

Next up was the chest CT. Also took no time at all especially since I wasn't given any contrast.

The following week I went back for the Methacholine Challenge test. I still find it fascinating that they can introduce a chemical into your lungs that restricts the airways. Just crazy to me. We started off doing a baseline. I was below what I had been the week before and had noticed that I had felt tight in my chest that day--made sense. Then she gave me a dose of the methacholine. Re-checked my breathing, another dose, etc. and so forth. After the fourth dose and breathing check I was given albuterol to open me back up. Although it lifted the extra tightness and heaviness and allowed me to breathe easier, it still didn't make me feel like, "FINALLY...I can truly BREATHE again!!" Just brought me back to what I had been before we started the test. Bummer. I think I have reactive airway disease--asthma--but we'll see what the doc says tomorrow.

Thus far I have taken three doses of the mega Vitamin D and continue to feel some improvement, yet still having bone pain. I seem to be able to stave off taking the Roxicet until later in the afternoon, though. Although some days I wake up in pain and that's never fun. Grin and bear it, baby!

I'll report back after the visit w/Dr. J tomorrow. He did have my Alpha-1 levels and liver enzymes rechecked as well so we'll see what those show. As a side note I received the results from the MUSC study regarding my phenotype re-test. I am still an MZ with a level of 18 uM. My dad is an MM so looks like the Z gene came from my mom's side of the family. We are now going to have my husband tested to see what his A1 status is and then probably wait until the children are older before we have them tested. I'm sure Ryan is an MM which means the kids will either be MM or MZ. It would be really, really awesome if they were both MM. Truly.

Second thoughts

Tonight there is a support group meeting for Alpha-1 folks at OHSU. Usually Dr. B is there, or his NP, and sometimes (like tonight) a guest speaker comes. I was informed of this get-together by an Alpha-1 coordinator and told that I should go. At first I was all excited! I thought that this would be a great way to meet not only other A1AD people, but also Dr. B or Lynn and maybe get in to see him sooner because of this. I planned to write up a small list of questions and ask the most pertinent ones as well. I wanted Ryan to go w/me but I knew that was not going to happen given there's no one to watch the kiddos. As the days drew closer I started to get nervous. Not only would I have to find my way to OHSU again, and figure out where the meeting location was, but I was going to be in a room full (?) of A1AD patients who are most likely having severe lung issues. They may or may not be SZ's, ZZ's, Null/Null, and/or on O2, in need of a lung transplant, or already had a lung transplant. That doesn't bother me. What does bother me, and thus has made me severely hesitant to go, is my current phenotype status. Being an MZ can bring skepticism from some. Many doctors still think a person w/the MZ phenotype cannot have lung or liver issues. Unfortunately that is not the case. There are many, many MZ's out there who have already had transplants, are on the waiting list, or are just starting their journey. However, due to some attitudes in the medical profession this has leaked over into the patient area. I recently was "friended" on MySpace by a seemingly nice mom whose young daughter is having liver issues due to A1AD. We had a couple of back and forth emails about liver problems and the question as to what phenotype I was come up. So I answered her. She responded with, "Oh, you're only an MZ?"--and then I never heard from her again. I'm guessing somewhere along the way she has heard that MZ's are ONLY carriers and NEVER get sick. Or maybe she thought she responded to the email but didn't. Funny how having something so small as one normal gene can change an entire perspective.

So here I am having all but completely talked myself out of going and yet wishing I'd just get the nerve up to go anyways. If I knew for a fact that I had lung issues related to A1AD there would be no hesitation. I'd go. But right now I just have symptoms of the disease and an MZ phenotype. Part of me feels like I would almost be intruding into this support group w/out a firm diagnosis. The other part of me says that's silly and maybe I'd meet some really great people and learn a lot. I still have time to decide. The meeting is at 7 p.m. I'll update later as to if I go or not.