Sunday, January 19, 2014

Learning to live with an unwanted guest

GvHD is something that I've resigned myself to living with. It affects one system or another, or multiple systems when it's feeling really frisky, on any given day. It's the thing that keeps leukemia at bay. It's also a thing that can kill me if left unchecked.

Since July of 2013, I've been on steroids for GvHD of the lungs. I started at 60 mg of prednisone per day and slowly tapered to nothing as of December 13, 2013. Things seemed good. I was taking the stairs at work, per my doctor's orders and working on building up lung volume. The most recent pulmonary function test prior to stopping steroids showed my lung volume up from 55% to 67%. That's not too shabby. Of course, that didn't mean I wasn't running out of breath at the top of the stairs or contemplating taking up running any time soon. It meant I wasn't struggling to breathe on a regular basis. Humid days still gave me trouble, but not the gasping, fish out of water feeling that sometimes overtook me on a really bad day.

I began feeling short of breath again on December 26, 2013. Nothing terrifying, just a slight inability to catch my breath doing the most mundane thing. Having been down this road twice before--and having learned my lesson after contracting pneumonia from being stubborn and stupid, I recognized this for what it was. The GvHD in my lungs hadn't resolved.

It takes 14 days for steroids to leave your body. Prior to this episode I'd been on a two week taper interval. I'd been taking 5 mg of prednisone per day for 14 days before I finally stopped. December 26 marked 13 days from my last dose. Close enough.

My transplant doctor saw me on 12/30. She looked me over and listened to my lungs. Much to her surprise, my lungs sounded perfect. What can I say? I'm her outlier. She started me on 30 mg of prednisone and had me come back 2 weeks later. I saw the pulmonary specialist, my transplant doctor, had a CT scan, pulmonary function test (PFT), and a 6 minute walk test.

I confounded both doctors once again. The results of my 6 minute walk test fell firmly in the middle range of normal for a healthy person. My oxygen saturation never fell below 98%. My CT scan showed some slight improvement in the areas of ground-glass opacity (pneumonia) over the CT scan results from 12/4/13. My lungs sound clear. My lung volume has fallen from 67% to 57% in less than a month. The pulmonary specialist can't explain it. She wants me to repeat a PFT in 6 to 8 weeks. She also asked me to pursue more vigorous exercise in addition to the breathing treatments and steroids and stair taking. She told me of all her patients, I'm the one most vigorously pushing to get better. You better believe it.

So now I'm walking on the treadmill at a 10% incline for at least 20 minutes a day. I try to do more, but some days don't have enough hours. I'm also having problems with severe foot cramping, which does interfere with walking on occasion. Steroids.  Can't do a thing about it.

There are some other steroid related issues that you'll be familiar with from past blog posts. Severe mood swings. Insomnia. Constant shaking. Weight gain. Let's just say I'm super fun to be around on any given day.

The good news is that my team wants a quick taper. The bad news is that they're worried about permanent adrenal atrophy due to steroids. Yay. I'm currently alternating 30 mg of prednisone with 15 mg every other day. We'll see what the doctors want to do when I see them next at the end of the month.

I'm also scheduled to see my endocrinologist in February. He's got a fabulous sense of humor, so I can't wait to see what his take is on all of this.

I continue to stay busy at work and the cats and Chris are on top of things, so no worries there. My hair is slowly starting to fill in. More salt than pepper these days. You can still see my scalp, but it's not quite as obvious and people don't stare as much. I do realize that it will fall out again at the end of this and that's okay with me, so long as I'm still breathing.




6 comments:

Ronni Gordon said...

Since I'm very familiar with this prednisone issue, I am wondering why they put you back on when your results were good after you had tapered.

Ann said...

Ronni,

The GvHD hadn't resolved and was in the process of flaring up again. They had to start me on .5mg of pred per kilo of body weight in order to try and stop any permanent damage from occurring to my lungs. In essence, my body was steroid free at the point of recurrence. Resuming 5 mg wouldn't have stopped the flare.

LPC said...

I remember when my great-uncle was on Prednisone. A big deal. May you and your lungs thrive.

Jody said...

This is one place where I want you to cease & desist in being an outlier:)

Love you. Love your spirit & example. Keep teaching me how to do this,

~jms

PJ said...

I think of you, Ronni and me as a triumvirate of sorts. We have beat this thing to the ground and have to deal with a messy clean-up. March on!

Anonymous said...

Glad to see the update. Thinking of you often.

NJer