Our Wait for the Perfect Organ Donor

You sit by your loved one’s side as the doctor gives you the news – an organ transplant is needed. What do I say? How do I react so that my loved one sees strength instead of fear?

Waiting for Organ Transplant

What will life be like over the next few months or even years? Your mind just keeps buzzing with the term “organ transplant” while you feel your body go numb.

This is pretty much what it is like for everyone who finds out that the person they love is not only sick but sick enough to need a life-saving organ transplant. Although my husband was born with Cystic Fibrosis (CF) and we knew that there was a good possibility that he would need a double lung (bilateral) transplant, we never knew what it meant – what it felt like.

At the time, we were in more shock because my hubby was just on oxygen during the day and only 27 years old. Sure, he was sick but we didn’t think he was ready to be put on the organ recipient transplant list. However, it was his CF doctor – a doctor that he had since he was 16 years old – that explained how long the wait was on the list and how important it was that we acted immediately. We never knew what a godsend her insight would be until the hubby’s health didn’t just get worse – it plummeted.

He was listed in 2001, on 4L of oxygen only during the day. In 2002, he was up to 4L of oxygen 24/7 and rotational 6-week home IV treatments. Shortly before Thanksgiving Day 2002, he came down with pneumonia and was put on life support on a holiday where we should have been eating turkey with family and friends. After 9 weeks at the hospital with feeding tubes and having to breath though his neck on a machine, I was able to bring him home to care for him.

We knew each other so well that I automatically knew that a long-term care facility would kill him. There was no option but to get him home and care for him myself – even with me working full-time and going for my MBA full-time. It was not easy but it was the best thing I could have ever done as it allowed me to work with him – to get him off the machines once again.

Every day during the 3.5 years we waited for his miracle call from the organ transplant procurement team, we worked together to keep him alive for one more day. We never thought about the next day or if he would die – dying was just not an option.

At first, waiting for the transplant team to call seemed like it was taking forever. Then when we received the first call, we realized what the wait was for. You see, we were not just waiting for my hubby’s miracle lungs; we were waiting for the right lungs – the perfect lungs.

With 5 dry runs to the hospital, we became calmer. When the transplant team would tell us that the lungs weren’t the right size, they were not good or another hospital got them, we would ask a simple question: Was someone else going to receive the gift of life if we were not? We were told that, indeed, someone else would get the lungs each of the 4 times we were sent home and we couldn’t be happier. It was just verification that his organ donor wasn’t done with what he or she had to do in the world and that at least someone else’s prayers were being answered. The transplant team was shocked at our response – it seems that not many people look at transplant dry runs in the same way and get upset before heading home. Not us.

On the 5th call, we knew it was the one before we even got to the hospital. It was the only call during the night and it was the only time I made my hubby shower before the 2-hour drive to the hospital.

After 11 hours in a very difficult surgery to remove his infected old lungs and place the miracle of life close to his heart, our prayers were answered. Not only a lung transplant surgeon but also one that specialized in Cystic Fibrosis lung transplants – Dr. Robert Love, performed the surgery. The organ donor was a healthy male from Detroit, Michigan with head trauma, which meant that his lungs were not damaged at all.

We have never met the organ donor’s family (although we would love to) but know that each day we waited, he was finishing up his work on this Earth. We were patient and respectful of the life he still had to live. That is what got us through waiting for the perfect organ donor with the perfect lungs.

What thoughts went through your mind when you were told that you or a loved one needed an organ transplant? What got you through?

Image courtesy of iStockPhoto.

After her husband received a double-lung (bilateral) transplant in 2004, Shannon founded the Angel Cove Organ Donation Awareness Shop, which provides awareness t-shirts and gifts products for transplant recipients, living organ donors and donor families - giving 100% of the profits to help heart and lung transplant recipients with medical costs. Shannon lives in Milwaukee, Wisconsin with her wonderful husband and two chocolate Labrador Retrievers.

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