Who Would Have Thought

From the Winter 2015 TRIO Lifelines Newsletter

A Caregiver Shares:

Who Would Have Thought?

When I was young, I was a gutsy girl with big dreams. I imagined a life of adventure. I would be a world traveler or perhaps a firefighter (yes, I was a tomboy!) or even a journalist crossing the globe telling tales of war and humanity. I never once, in my wildest dreams, imagined that my biggest adventure, my hardest battle, would be a fight for life . . . the life of a loved one that I hold so dear.

This is a real live fight . . . it is facing life and death every single day. It is not knowing if my loved one will even make it to the next day! That is how sick he is. This is my fight to get him what will hopefully be a life-saving doubled lung transplant.

It seems like a dreary fight some days. I spend much of my time asking, begging friends, family, and strangers for assistance to help fund the surgery and the astronomical costs that come with it . . . expenses not covered by insurance. It is convincing a transplant center that his life is indeed worth saving. It is assuring my sick and weary partner each day that there IS a future for him and then convincing him that I want to be a part of it. It is definitely the hardest job I have ever had to do. Being a caregiver is more often than not a thankless job and definitely not the glamorous life I had anticipated. But it is a worthy fight: saving a life, or at least, doing everything in my power to do that.

And even on the toughest days, I know that the real fight will be in the operating room, when that time comes, for the surgeons and medical staff. The thought of them removing the lungs of my dear Michael and replacing them with new ones seems, well, strangely normal after so many years of working towards getting him a second chance.

We were both elated when he was accepted at the Cleveland Clinic in July. His quality of life has declined to the point where we are willing to trust these surgeons to open him up, remove the organs that keep him breathing and give him a second chance at a new life.

Lung transplant surgery is highly risky with 83% of lung transplant patients surviving the first year. The biggest risk is rejection and infection. The lungs are the largest human organ in our bodies that aren’t exposed directly to the outside world. Since lungs are not sheltered or protected like the other organs, the risk of infection is high.

Michael will have to avoid crowds, sickness, mold, dust, and many other things that most people take for granted. He will be on costly anti-rejection medication for the rest of his life. These medications that will save his life and help keep his body from rejecting this new organ can also eventually destroy some of his other organs. He will most likely need another transplant down the road. Many transplant patients end up getting a second and, even a third, transplant of kidneys or liver due to the damage done by the medications that make his new lungs work. Many develop secondary illnesses, such as diabetes. Yet, after years of watching his health decline and seeing his ability to breathe on his own being taken from him, we have both agreed after many heart-wrenching, late night conversations that this second chance is the right one and worth all the risks that accompany the surgery. What is life if you can’t breathe on your own and you are tethered to a tank to sustain life?

While I am often weary from the constant battles we have faced during this journey and often miss that dream life that I had hoped for, there is one thing that keeps me going: seeing Michael get a second chance at life.

-Jeanne Apelseth, Caregiver
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Member Transplant Caregivers –Partners for Life
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