Tuesday, July 3, 2007

Answers

I gave in and called Dr. R's nurse on Fri. and explained that DH had gotten job offers in two completely different cities (more on that in a bit), so finding out my test results would be muy helpful if possible. She promised to call and check on them, yet I heard nothing. Thing is, she did call me that Fri.--she just called my business line and when I saw the answering machine light blinking I thought it was another client that had called. I listened to the message on Sun. and the nurse had said she tried to get the results but that they weren't ready yet. I was given the dates of Mon. or Tues.

Patiently I waited all day Mon. and resisted the urge to call and bug them again. By late morning today I couldn't handle it and I called. Dr. R called me back--I knew the answer then. She said my Alpha-1 level was very low (mine was at 71, normal is 100-200) and advised me not to smoke and definitely stay away from second-hand smoke. At this point I got a little panicked as she hadn't told me what my genotype was and didn't sound like she had the results, so I asked if there were any results that read "ZZ" or "MM" or something like that. "Oh..." she said, pausing, "Yes...M1Z. I think...wait, maybe it's 'MM.' No, that's normal. Yes, you're an 'M1Z'." I was a little shocked I guess. Part of me figured this would be another dead-end despite all my "surety's" and symptoms and blood test results. Still, I gathered my wits enough to ask that Dr. R make a copy of the paperwork for me and leave it at the front desk. She happily agreed and stated that I probably knew more about this then she did. She's probably right--no offense to her but A1AD is rare and most docs don't know much about it.

Immediately I delved into the internet reading as much as I could. I also called Ryan and left a message for him to call me as I had my test results back. Turns out the MZ gene makes me a "carrier"--obvious, right? There are more cases of liver issues w/the MZ than lung, however both can be affected, though rarely both of them together. M = normal gene, Z = severely low gene. Half 'n Half baby! Either way, not good but it could be worse. Null/Null is really shitty, while ZZ is just a step above it. Interesting stuff I'm telling ya!

Anyways...I have no doubt that the GI doc I'll see next week will be clueless about A1AD. I am seriously thinking about calling there and finding out if this doc knows anything about it because if she doesn't, it won't be worth the money. Of course the other part of me knows that this is some serious shit right now and the fact that I'm getting worse instead of better means I need to get the liver stuff figured out like yesterday. I am so bloated I look pregnant. This is a sign of cirrhosis. I have others too. I also found out that a medicine I am on is commonly prescribed for jaundice, so it's very possible that if I weren't taking this med I would be yellow. Not sure if the med is masking it, or if I don't have it. Another question for the GI doc. I am becoming more and more fatigued. Everytime I think I can't get any more worn out than I already am...BAM...it happens. I'm sure more restful sleep would help yet I have a helluva time falling asleep these days. Not that it matters. I could go to bed at 10 p.m. and wake up at 9 a.m. and still feel like I hadn't slept at all.

The job thing...DH was offered another position at the same company, only in Portland. There is also a job opening (same company) for the position he's in now in New Hampshire. We discussed the second location and while the city looks beautiful and we'd be close to Boston and places like New York, we're just not sure we'd want to "do" the winters. Plus I'd still be about an hour away from a big hospital. So, we're shooting for Portland. He submitted his resume although he's already been told he'll get the job. Now I just have to sell the biz, we have to sell the house, buy one up there, and do it all before school starts!! NO PRESSURE! Honestly, we're stoked though. Not looking forward to the process of it all, yet now my dad can have a true pick of jobs, DH can get into one that he's been interested in for awhile, I can be near a big hospital, and the kids will be closer to the coast (that they adore), OMSI, the zoo, etc. and so forth! Plus, w/the salary boost I won't have to work. The plan is for me to breed our dog if her health is fit for it (hips, eyes, and heart), keep one of her pups, and if that pup passes the health stuff when she is 2, then breed her as well. Otherwise, it's taking care of myself!! I am most likely facing a transplant, possibly soon, maybe later so I need to get in shape for whatever life throws at me.

The answer to my question as to what's wrong with me sucks...but it's an answer...and now I can move forward with doing what needs to be done to stay around for awhile.

2 comments:

Beth said...

Hey Laura,

I'm glad you got some answers, even though its a lot to take in, at least you have an idea of what is going on. I agree that I would call the Dr and see if they know anything about your situation before going in so you're not completely disappointed after you leave.

Have you checked into Drs up in the Portland area? I pray that if all goes well and Dh gets the job there that you'll find Dr(s) that treat you w/ the respect you deserve!! I'm so sorry that you're going through all of this. I know you're frustrated on many levels.

Hey...if you do move to Portland, I'm only 4 hours out or so...maybe 4.5! So getting together is more feasible. Plus is Lisa W. comes out to see her sister, you'd have the opportunity to meet her.

Keep me posted on how you're doing...I'm trying to read your blog more frequently to keep up.

You're in my prayers, friend!
Beth

~Laura~ said...

I thought about that too!! (Re: us being closer) I may be up there for dog shows too so that gives us even more chances to hang out, hit some yarn shops, grab some coffee, and RELAX!! :o)