Truth or Myth

from Lexi Eddings...

It's been six years since I learned I have a chronic lung condition. When I was first diagnosed, I didn't know what to expect, but the things I read online scared me. Mostly, the take-away was that this disease would shave years, if not decades, from my life. I decided to stop doing Google searches.

Instead of fretting about what may come, I focused on what I could do each day. I started walking on a treadmill. My docs and I experimented with different types of meds to control the fibrotic growth in my lungs. I have a circle of family and friends who pray for me regularly. I wake each morning and tell myself, "NSIP isn't going to kill me today."

My journey has produced a few things that surprised me:

• MYTH: When people see me with Herkimer, my portable oxygen concentrator, they assume I was, or  am, a smoker.

• TRUTH: I've never smoked. I was a vocal major in college. It's death to a singing voice. My doctor doesn't know what caused my NSIP, but smoking wasn't a factor. However, when I walk past a group of teenagers who are smoking away, I have been known to slow down a little to let them get a good look at Herkimer, and hear his rhythmic click-and-whoosh. Then I say, "Just keep puffing, kids." and let them draw their own conclusions.

• MYTH: Nothing in my environment needs to change to accommodate my condition.

• TRUTH: Carpets, even tight, flat weaves, are evil. When I'm pushing Herkimer in his rolling cart, I really appreciate hard surface floors. During our 2014 home remodel, our contractor went the extra mile and made sure all the transitions from one room to the next had no raised thresholds. I bless the man's name every day. 

• MYTH: I can still do the things I love.

• TRUTH: Sometimes. For a couple of years, my cough was so persistent, I couldn't sing. When I opened my mouth, I had no idea what would come out. Matching pitch was a crap shoot. Now, things seem to have settled enough for my voice to come back...somewhat. It'll never be what it once was, but I can sing well enough to "make a joyful noise!" Sadly, I still can't ballroom dance with my husband.

• MYTH: My lung condition is chronic and degenerative. Like Beethoven's deafness, I will be "never better, always worse."

• TRUTH: Boy, I hope that's a myth. I have to believe it is. I've seen dips of decline and surges of improvement in my lung function over the past six years. Even my most recent tests at Mayo Clinic bear out this clinical self-evaluation: I am better than I was, say, at the beginning of 2014. While I still need Herkimer to walk a mile or two on the treadmill, I can now move around my home with the stately grace of a three-toed sloth without him! I can even do simple tasks like cooking or laundry while maintaining good O2 sats. That may not sound like much to you, but believe me, I'm tickled to pieces!

As I continue through this part of my life, I'm sure there will be more surprises--some good, some not--but that's the way life is. We can only live it one day at a time. 

And today is a good day.

***

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." ~ Matthew 6:34

One Step Forward, Two Steps Back

At the end of September, I got a glowing report from my doctor at Mayo Clinic. All the lung function tests showed that I was either stable or slightly improved. With a fibrotic lung disease, this is cause for high 5's all around.

I'm mostly switched over to mycophenolate (the same drug they give transplant patients to suppress their immune systems) to help control the progression of NSIP. But I was still taking 10 mg of prednisone a day as well.

For those of you who are unfamiliar with this corticosteroid, it's sort of a wonder drug. It stops inflammation, which means I don't have much joint pain, and it really makes a difference in how my lungs function.

It's also a two-edged sword. Long term use (I've been on it since 2010) can lead to osteoporosis, dangerously high blood pressure and cholesterol levels, cataracts, weight gain (preach!), diabetes and psychosis. (The DH has been watching me closely for that last one, but I've managed to convince him I was born this way! Ha.)

But breathing is all it's cracked up to be, so I'll make this trade all day long. However, my doc wanted me to taper off and discontinue using prednisone altogether.

OK. Any time you can take one less pill is a win in my book. So as soon as we got home on Oct. 1st, I dropped to 5 mg for a week, per the doctor's orders. Then I dropped to 4, then 3, then 2. Things were getting kind of squirrelly by then, so I did a week where I alternated between 2 one day and 1 the next.  On Sunday, I began taking just one each day.

I was coughing a lot, something I'd done very little of before beginning this decrease in prednisone. I could no longer move about the house without my oxygen concentrator in tow.  I usually walk 1-2 miles five or six times a week on the treadmill. Using supplemental oxygen, I could do 2 miles in 61 minutes.

I know, I know. Not exactly tearing up the track, but I have to maintain at least 92% O2 saturation while keeping my heart rate under 110. Still, it was getting me moving and convincing me I could still get out and not totally be a tortoise. Yesterday it took me 45 minutes to go just one mile.

I am clearly losing ground.

So I sent an email to my doc explaining my symptoms and asking if I could go back to 10 mg of prednisone a day for a week or so. Then, if my function has returned to Sept. 30th levels, I could start tapering again, but this time stepping down more gradually, say 1 mg at a time and remaining at each new level for a couple of weeks before moving down to the next.

My doctor was out of the office this week, but the head of the pulmonary department called me in her place. After questioning me about my symptoms, he agreed with my plan.

"We like to think medicine is a science, but it's really an art. Everyone's body is different. We must try to find out what works best for you," he said. He went on to say that while they'd like to see me off it completely, what we need to do is find the lowest dosage at which my symptoms are managed through a little trial and error.

Guess that's why they call it "practicing" medicine.

Yay! I listened to my body and the head of pulmonology at Mayo Clinic listened to ME!

So the moral of this tale is, if something isn't working for you, do not suffer in silence. Take the reins and try (with your doctor's advice, of course) to find out how you can improve your situation. I'm a pragmatist about this stuff. Whatever works.

And while I put great stock in my doctors, my ultimate hope is in God. Prayer changes things, if nothing more than my attitude. I'd sincerely appreciate your prayers and would be honored to lift you up in mine.

I'll let you know how my search for the prednisone "sweet spot" goes.

***

Do you have or does someone you love have a chronic condition? Need someone to talk to about it? Feel free to share how you feel about your health issues here. Life is beautiful, but admittedly, some days are better than others. Are you having a good day or one of those "also ran's?"