Saturday, October 18, 2008

How I breathe (not so much)

The lung disease I have is called Pulmonary Sarcoidosis. Basically, even my immune system is so Type A it has nothing better to do than attack my lungs. It causes a cellular condition called granulomas, which remind me of fish eggs, but don't function so well as lung cells are supposed to.

The first sign that something was wrong in early 2003 was that my ankles & feet swelled so bad that I took my shoes off at work & couldn't get them back on. When I went to the ER, they did a chest x-ray to make sure I wasn't retaining water in my chest. They told me I had pneumonia. After 3 weeks of antibiotics, my ankles were still swollen. I spent the next 3 months going to every kind of specialist there is, until I finally ended up at a pulmonologist.

Dr. Siegel told me the day after I bought my wedding dress that I either had Sarcoidosis or Non-Hodgkin Lymphoma. I had to wait 2 weeks for him to perform a bronchoscopy on me to make the official diagnosis. Bronchoscopy is code for outpatient procedure where they give you VALIUM AND ONLY VALIUM, well, with some throat numbing spray, where they stick a tube down your nose, into your lungs, put a camera down there, snip a piece of your lung, & then pull it out. I laid there with tears streaming down my face for the whole thing, terrified. Dr. Siegel told me I was the best bronchoscopy patient he'd ever had. I told him it felt like I swallowed a Lego. The good news was I didn't have Lymphoma.

Aside from the swelling, the disease causes me to tire easily, have achy joints, yawn a lot (often at very inappropriate moments) because I'm not getting enough oxygen, & make my chest hurt. When I was first diagnosed the pain was more in my ribs. This summer it's been higher; like it's between my boobs & collarbones.

The treatment for Sarcoid is prednisone. It is a steroid that suppresses the immune system. It also causes hardening of the arteries, osteoporosis, aggressiveness, & possibly Cushing's Syndrome, which results in a condition called "moon face". Exactly the image a soon-to-be-bride wants to be used to describe her. It is notorious for giving people voracious appetites. Most people that I have met that are on this drug are on around 10mg a day. I was on 40 mg for over a year. Not only did I manage to lose 30 pounds on the drug, I planned our wedding 1200 miles away. I basically walked around feeling like a scared cat the whole time. You know, arched back, wild eyes, claws out. Biggie was a little bit scared of me. I was a little high strung.

I was declared to be in remission in March of 2004. I got pregnant in October. I was fine through most of my pregnancy until about April, when I got REALLY puffy again, but my chest didn't hurt. More on the pregnancy another time.

In the winter I am pretty much okay. My ankles still piss me off. They look gross. The only time they have looked normal is when were in MI, last year to bury my dad & the Easter before that. When we were in OR this summer it was hard to tell because we did spend over 8 hours on a plane to get there, which tends to make me swell even more. I did manage to be a highly active pedestrian in Portland, which made me all kinds of smiley.

In the summer, here in FL, I am housebound. As is MiniMe. I HATE it. Starting usually the first week of March there is an algae bloom here known as red tide. It causes respiratory distress in most people. In me, I get all of my symptoms cubed. As this is the tropics, we get massive amounts of rain during the summer. The rain combined with merciless heat makes for an ideal climate for mold. You can smell & occasionally taste it outside. It's gross. My lungs think so, too. The biggest things that sucks about this damn disease is that it keeps me from being the kind of mother I want to be. When I lived in Ypsilanti, Ann Arbor, Plymouth, MI, I used to take little Casey Jones for 6 mile hikes every Sunday out by the minimum security prison in Chelsea. I always looked forward to the time when I would have a little papoose strapped to my back. I've never gotten to do that. I have tears in my eyes, just so you know. This disease has changed who I am. I feel like my husband can barely remember that girl, now & our daughter doesn't know at all.

This is a picture my dad took of Casey & I hiking one time when he came to visit us:

This is MiniMe & I in 2007, outside of Asheville, NC, picking wild blueberries. If we got to do this more often, I wouldn't have six chins when I lay down in soft grass.


tiggy said...

Ivy takes pred and it makes her hungry and high strung. It's a funny drug, don't you think? It helps alot of stuff but turns around and supresses your immunity.

It must suck somedays. said...

I can't imagine being on it as a toddler. I would hate to be trying to establish myself in this world with the crazy, almost electricl impulses. Trying to learn impulse control is hard for any of us. I know it is necessary, but still, one of those blessings you curse simultaneously. Yes, I am a member of your I Hate Prednisone club. I have been reading through the story of her diagnosis & am feeling like if you can deal with all that, I can deal with my messy house & toddler covered in chaulk dust.

Mimi said...

Wow, what a story. I would've been acting like a scared cat, too. What a lot of information and fear to manage all at the same time.

motherbumper said...

My sister is a member of the I hate Prednisone club too. You are an amazing person, I wouldn't have been able to deal with the procedures, the unknowns, the side-effects, and OMG a wedding! Hats off to you, my hats off to you (yes, I wear many hats ;)