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

Finding the strawberry in the situation...

I try to look on the bright side. I really do.

But sometimes, lugging around Herkimer gets a little tiresome. My POC (Portable Oxygen Concentrator) makes my mobility possible, but he's also awkward in tight places and in a crowd I live in fear that someone will trip over his rolling cart.

It helps that when we leave the ship for the uneven ground of a shore excursion, my DH wears Herkimer on his back. Of course, this means we're tethered together by my 7 ft. cannula, but fortunately, we enjoy each other's company. Occasionally, we get tangled up and have to do a few pirouettes, but then we soldier on.

So, there's the strawberry in the situation. I may be dependent on Herkimer for the extra O2 I need, but I'm so tremendously blessed to have a husband I can count on to help lighten my load.

I need him like I need my next breath. And because of him, even with this lung disease, I'm the luckiest woman alive.

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?"

Traveling with my breathing gear

When I was in high school, my English teacher invited us to write a letter to our older selves. We were encouraged to share our dreams. One of mine was to travel. I wanted to see the world.

Fortunately, I married the Norwegian Hunk who went to work for an airline and we made good use of those "golden handcuffs." That's what travel industry folk call flight benefits. Our kids had passports by the time they were 8 and 6 and we took trips we couldn't have afforded without those special benefits. I've seen a good bit of Europe and Japan, and closer to home, I've visited 49 out of the 50 states. (Look out, Louisiana, I'm coming for you!)

But that was before I had so much mechanical stuff to drag along to support my breathing. I need to pack Herkimer (my portable oxygen concentrator) along with his electrical cords, extra batteries, charger, spare filters, backpack to use instead of the wheeled cart for when I'm expecting uneven ground and extra cannulas, My POC has its own suitcase!

But I still love to travel and it worked out ok last January when the Norwegian Hunk and I decided to celebrate his retirement from Google with a two week Caribbean cruise. We drove from the Midwest down to Tampa to catch the boat, so I wasn't constrained by airline luggage rules.

However, another device has been added to my regimen--a bi-pap machine at night. Evidently I was holding my breath more than 100 times a night. Not good. So I have the company of Herkimer when I'm active by day and I'm attached to "Morpheus" on my bedside table by night.

I hated it at first. It was like drowning in air. But a body can get used to anything they say, and  I can honestly report now that I feel the benefits of the additional therapy. However, Morpheus has its own set of stuff--cords, tubes, distilled water--I need to waggle along when I travel.

Next week, we're planning a trip to Corpus Christi to visit one of my sisters and her family. Since it's a driving trip, I'm not worried about fitting everything in, but in July, we'll be flying to NYC for the RWA National Conference. I'm going to have to do some creative packing for that.

Any suggestions?

It's like when I was pregnant...

As my belly grew, I kept noticing other women who were with child. We were everywhere. 

Now that I'm on supplemental O2, I see people with canisters and cannulas every time I leave the house. And quite often, people ask me about my POC, about my diagnosis, whether I was a smoker (I wasn't.) and generally whatever pops into their heads. That's ok with me. I'd rather have a conversation with someone than a sidelong stare. So that's why I decided to start this blog--to share my experience with trying to catch my second wind in the hope that it will help someone else who's struggling with an O2 prescription. 

So my DH and I were at Walmart today and a lady stopped me to ask about my POC (portable oxygen concentrator). She'd just been prescribed O2 and was resisting the canisters and home fill paraphernalia. I knew exactly how she felt. When my oxygen provider wheeled in that big, loud, ugly monstrosity and expected me to refill those heavy O2 canisters, I wanted to cry. The machine made me feel old (I'm only 59) and tied to the end of that long green tube in my own home. My world suddenly seemed very small and I was so not ready for it to implode like that.

Then I started looking at portable oxygen concentrators. They pull air through a filtration system, toss out everything but the O2 and deliver a puff of the good stuff each time the user takes a breath. That sounded good to me, but I wondered if I'd be able to use a pulse system instead of a continuous flow. Fortunately, I was able to and then the only decision was which POC to buy. (Since my husband is retiring soon, like this week, it was important to me to own my system instead of having insurance pay for me to rent one.)

After comparing O2 settings, battery life, and weight of the unit, I settled on an Inogen One G2. I love it. I named him Herkimer because I wanted to be able to smile when I talk about him and a silly name helps with that. I can wheel him about. Put him in a backpack. Plug him in for long car rides. He is my mobility. 

I'm done feeling sad about my need for extra O2. It's like any other maintenance medication, like insulin for a diabetic, or blood pressure meds to ward off a stroke, I need it to keep going.

And, please God, Herkimer and I will be going a long time. 

Are you using O2 or have been prescribed it, but are resisting? Please share.