Twins Stay Twins

By Isabel Stenzel Byrnes

Shared joy is a double joy; shared sorrow is half a sorrow.

~Swedish Proverb

As identical twins, Ana and I share everything — the same fingerprints, moles in the same places, the same missing teeth. Once, we even had the same dream. We call each other the same name, "M'a," a made-up merged word for "my Ana" and "my Isa." One more thing we share is the same genetic lung disease, cystic fibrosis (CF). Since our zygote split, we have kept each other alive by raging mightily against CF. United by the need to breathe, we have relied on each other for hours of daily chest physical therapy, pounding on our backs since we were twelve to loosen the secretions in our lungs. Each clap I gave her really meant "I love you," and each clap she gave me meant "I heal you." Though we fought frequently because of our treatments, we recognized that we were a team of two that would win the game of CF. Despite routine hospitalizations, together we thrived in school and careers. Though we wanted independent lives, CF was an insidious thread that tangled our lives together into a tight knot.

Ana and I also share a lifetime of fear that we'll lose one another. As CF progressed, we took turns being critically ill. In 2000, I watched Ana struggle with end-stage cystic fibrosis. I witnessed her amazing double-lung transplant and her drive to start living again. In 2004, my lungs failed, and Ana watched a miracle unfold when donor lungs became available at the eleventh hour. I was resurrected.

Before our transplants, all we asked for was to breathe. After our lung transplants, Ana and I tasted the chocolate of life for the first time and were addicted. We ran and swam in the Transplant Games, hiked Yosemite's Half Dome, and camped in the snow. We did everything that healthy, active young women do. With each adventure came profound gratitude plus the awareness that this could end, since lung transplants are the least successful organ transplants.

Six years after her transplant, Ana became short of breath while training for a marathon. She was diagnosed with chronic rejection of her lungs, and despite aggressive immune-suppression, Ana lost half her lung capacity within two months. The drastic loss shocked Ana's psyche.

I remember Ana's exact words after her latest treatments for chronic rejection failed. "M'a, I've fulfilled all my goals," Ana said, dejected. "I've had a career, won medals, bought a home, traveled the world. I've done everything I've wanted to do. I think I'm done." She sounded breathless on the phone.

Lying in bed next to my husband, Andrew, I became breathless, too. I couldn't believe these words were coming from the mouth of Ana, the stronger twin, the Energizer Bunny, the one with whom I couldn't catch up, swimming, running, even working. We both lived the same number of years, yet she had lived so much harder.

A wave of desperation overcame me, and I broke down. "What about me? Don't you want to live for me?"

Andrew reached over to caress me as my tears soaked the pillow. Thank God I had him, who completed my trinity. At least if I lost Ana, I'd have him.

I forced hope onto Ana.

"Don't you want to find your true love? There's marriage, unimaginable goals in the future... What about the book?" Our book, The Power of Two, had just been accepted for publication, and we had to see it come out — together.

In the ensuing months, the rejection continued its relentless, downward course. In February, Ana hiked breathlessly to the top of a local ridge, as I ran to the top. By early April, she struggled to walk the milder hills as I pushed her up the steeper parts. In late April, she had to wear supplemental oxygen just to walk three flat miles. By May, she breathed heavily walking around the block. In June, she struggled to just walk down her driveway. Seven months after her rejection started, Ana was wheelchair-bound.

Thankfully, right before she required supplemental oxygen, Ana found the man who completed her trinity. Her dream-like boyfriend, who saw her for who she was and not her destroyed lungs, was the kind God sends to remind us of higher forms of humanity. Her boyfriend, plus increasing anxiety about end-stage lung disease, whipped Ana into full-blown fight mode, and she agreed to be listed for a second transplant.

I did errands for Ana. Once I bought groceries for Ana, and a clerk asked, "You're feeling better today, eh? Last week you needed that oxygen." Ana apologized for being a burden, and I'd reply, as she would have, by saying, "I love M'a. It's mutch!" (That's twin-speak for "mutual.")

In early June, Ana called me, breathless, tearful, saying, "M'a! I can't do it!" She was having a full-blown panic attack because her oxygen tank wouldn't fill. "I don't have time to be sick! I have things to do, goals to fulfill!" She was supposed to volunteer for the California Transplant Donor Network in a half-hour, and she was so breathless that she wanted me to go instead. Yet she didn't want to be alone at home, so she came with me anyway. On the drive there, I begged her to stop everything and focus on herself. Ana's thin frame shook with deep heaving, sucking in air. Still, her long dark brown hair was pulled back neatly, and she wore professional clothes. She emanated a beauty and elegance. We volunteered together cheerfully, giggling at our own folly, as I pushed Ana around in her wheelchair. In the end, the Energizer Bunny prevailed.

In mid-July, Ana received the call that donor lungs were available. Once again, we felt sorrow for the donor family and prayed in gratitude for their generous blessing. Yet we rejoiced cautiously, recognizing the dangers of an experimental second lung transplant. Before Ana entered the operating room, we embraced. "I am with you and you with me, always," I said, just as I had before her first transplant, and she did before mine. And they wheeled her away.

Ana's recovery has been miraculous. Once more, we are hopeful yet fearful of rejection. Ana talks to her lungs, trying to befriend the ghost that is breathing for her. Like she did for me, my fitness level serves as motivation for her to stay active. Six months after her lung transplant, Ana hiked six miles.

I am so thankful Ana chose to fight for me, for love, for life. I glance at the colorful prayer flags hanging on my wall, made by loved ones while I was in surgery for my transplant. My mother wrote on her pink flag, "Twins stay twins." We laughed afterward about that odd statement. And now, after the third Stenzel transplant, the woman who gave birth to us was right. What gratitude I have to God, doctors and organ donors that I still have my twin! Our book has been published, and we have promoted it together. It is our shared story, which continues.

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