When the Cure Hurts

I can always tell when my lungs are feeling their best because I can laugh freely and I don’t stifle it to avoid a coughing fit. When I stopped taking Orkambi, I couldn’t do that so well. So I think of that and I smile.

Last Wednesday, I started taking a medicine called Orkambi – the first type of medicine to treat the underlying defect of Cystic Fibrosis (CF) at the cellular level. It’s pretty cool and very new.

When I was in college, I was a part of the clinical trials for this drug and eventually started taking it “open label” until it was approved by the FDA in 2015. Shortly after though, I found out I was pregnant with Simon and since there’s no data on what it does to a developing baby, I decided to discontinue taking it. After Simon was born, I waited to restart since I was breastfeeding. It is not known if it transfers into breastmilk and if so, what that small amount would do to a baby.

Now that Simon is almost 10 months (!!!!), nurses less, and my baseline lung function is lower than it used to be, we decided it would be wise to restart Orkambi. We will get monthly labs for Simon just be sure that he’s doing well.

I have a lot of mixed feelings about restarting this medicine. It’s an amazing drug. It works and it’s been so rewarding to be a part of making it happen in the trials. But… it’s not what we all hoped for.

It’s not a cure and doesn’t completely fix the problems caused by CF. It is a start though, and in my experience on Orkambi, I was living a better quality of life, had no pulmonary exacerbations/hospital stays, and my lung function stayed steady. Sounds good right?

The side effects though. These should be temporary, but they are not pleasant.

Within a couple of hours after my first dose, I had a hard time breathing even laying down. Shortness of breath continued the next day, then fevers came. Next day, no appetite. More coughing. Night sweats and hot flashes. Tightness in my chest. Oh-so-tired (thanks Simon, for letting me nap with you).

I feeI worse now than I did before I was admitted to the hospital a few weeks ago (and I just got to feeling better!). So, this Orkambi, with all of its anticipation, hope and excitement has me feeling pretty rough right now. I’m holding on to hope that I will feel better than before, with a new kind of clarity in my lungs, more stamina, and less cough.

I can always tell when my lungs are feeling their best because I can laugh freely and I don’t stifle it to avoid a coughing fit. When I stopped taking Orkambi, I couldn’t do that so well. So I think of that and I smile.

-Gillian

Walking on Holy Ground

Each situation can be blessed with grace. Each struggle can be battled with hope. And each journey, with its winding roads, is a place where we can encounter the living God.

A couple months ago, I started volunteering with my wife and a co-worker and his wife at a local ministry for those who are homeless or down on their luck called Jesus Cares at Exit 0.

The ministry, located in Jeffersonville, Indiana, somewhere close to exit 0 on I-65 (hence the name) began about six years ago by Paul Stensrud, a local resident, and his family.

It really is a remarkable ministry. Paul has done much to improve the lives of the local homeless and works tirelessly with community leaders to address issues facing this community. Paul says this ministry is much more than passing out food for them to eat – and nothing could be truer.

He provides showers, he registers individuals for healthcare and food stamps, he helps find jobs, he is a teacher of the faith and, most importantly, he is a dear friend of those who really need one.

His story is one that should be told often. He saw a need and took drastic steps to address it. Even if this need brought him to places many of us will never go.

Wherever we walk, we walk on holy ground.

May is a special month. There is Mother’s Day, Memorial Day, National Teacher’s Day, Cinco de Mayo and, of course, National Roast Leg of Lamb Day (May 7, in case you were curious). But most important and relevant to me, even though I deeply appreciate a good leg of lamb, is the fact that May is Cystic Fibrosis Awareness Month.

Cystic Fibrosis (CF) is a genetic disease that severely affects the lungs and digestive system. There is no cure and about 70,000 people worldwide battle it each day.  I walk with someone each day that has this disease. She is smart, funny, strong and immensely courageous. She is my wife, Gillian.

There is so much to say about her courageous battle. There are endless stories about hospital stays, drug studies, hours of treatments, and of the many unique people met along the way – even George W. Bush, the 43rdpresident of the United States.

Her story is a truly beautiful one. It is a story of a thousand little moments of strength, sacrifice, smiles and hope. Her every day is a day filled with medicines and treatments that help her live another day. Yet they are filled with moments that give witness to the power of faith, hope and an enduring commitment to living each day with purpose.

Wherever we walk, we walk on holy ground.

The above phrase is a reflection by one of my favorite writers, Fr. James Martin, SJ. They moved me the first time I read them and continue to do so each time I reflect on their meaning.

I am immediately taken to the story about the journey to Emmaus in the Gospel of Luke. Two disciples distraught from the loss of who they believed was a king, journey away from the eternal city of Jerusalem down a hill to the small town of Emmaus. Jesus appears to them on the way and talks with them, revealing to them the great mystery of His life, His death and, soon after He breaks bread with them, His resurrection.

Life can sometimes be like the road to Emmaus, full of winding journeys and disparaging situations. It is also full of people filled with hope and on fire for the work of God, just as the disciples were when they ran back to Jerusalem after their eyes were opened at the breaking of the bread.

Really, the story of Emmaus is a story about who we are as people on the journey of faith.

Each situation can be blessed with grace. Each struggle can be battled with hope. And each journey, with its winding roads, is a place where we can encounter the living God.

For wherever we walk, we walk on holy ground.

-Christian

This was originally published on Saint Meinrad Seminary and School of Theology’s blog Echoes from the Bell Tower on May 21, 2015