Who would have thought?


When I was young, I imagined a life of adventure….a world traveler, a firefighter (yes, I was a tomboy!), a journalist crossing the globe telling tales of war and humanity. I never once imagined that this fight would be a fight for life….the life of one that I hold so dear.

But this is a real live fight….it is 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. It is the fight to get him a lung transplant.

It seems like a dreary fight some days…asking, begging friends, family and strangers for assistance to help fund the surgery and the astronomical costs that come with it – 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 that there is a future for him and that I want to be a part of it. It is definitely the hardest thing I have ever had to do. Being a caregiver is often a thankless job and definitely not the glamorous life I had expected. But it is a worthy fight….saving a life…or at least doing everything in my power to save it.

The real fight will be in the operating room – 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 this week.. His quality of life has declined to the point where we are willing to trust these surgeons to open him up and give him new life.

The surgery is highly risky. Only 50% of lung transplant patients survive the first year. The biggest risk is rejection and infection. The lungs are the largest organ we have exposed directly to the outside world. They are not sheltered or protected like the other organs, hence the high risk.

Michael will have to avoid crowds, sickness, mold, dust and many other things. He will be on 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 transplant of kidneys or liver due to the damage done by the medications that make his new lungs work. But after years of decline and watching his ability to breath on his own being taken from him, we both agree that this second chance is the right one.

So, while I am often weary from the constant battles we have faced during this journey, there is one thing that keeps us going…..a second chance at life.

We have held on to hope and we won’t let go.



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