Life after Transplant

What organ donation means to us

This week is National Organ Donation Awareness Week and in that spirit, I thought I’d take a moment to write out some of the ways that Organ Donation has affected and will continue to affect our family.

  1. Laura is alive.

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This is the big one. When Laura was placed on the Heart Transplant waiting list, she had no other options. The transplant was not simply one of the possible solutions to her health problems; it was the ONLY solution. Laura’s heart was dead – or at least the left side of it was…

On echos, it was difficult to see her left ventricle moving at all while she was on her Berlin Heart (Left Ventricular Assist Device – took over for her left ventricle). Laura was living on borrowed time while she waited for a heart to become available, alive only because of a machine that was able to pump her blood for her. A new heart was the only chance that Laura had at survival – we were not looking for a better quality of life, but rather for ANY chance at life at all – the quality of life was the cherry on top.

2. Laura is learning to be grateful. 

At two and a half years old, Laura has more medical knowledge than she probably should. Laura knows that she takes Cellcept and Tac every day and tells us each time which one it is and what it is for (for my heart!).

She knows that doctors fix things and that nurses are nice (they give her beads, stickers and toys!).

She tries to be “helpful” when doctors listen to her lungs because “no, heart here.”

She knows that when she was a baby, her heart was broken and the doctor couldn’t fix it. She knows that she needed a new one and she takes her meds every 12 hours so that she can say “heart fixed now.”

Right now, Laura is learning to be grateful for her doctors who have taken and continue to take such good care of her and who helped to fix her heart. This is all good practice for when she is old enough to understand the true gift that was given to her by complete strangers.

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3. We have hope for the future. 

Laura’s heart will not last a lifetime. It’s a question that I’ve been asked many times. What is Laura’s life expectancy? I don’t have those answers.

The most current research suggests that Laura’s transplanted heart can last her up to 25 years if she is lucky.

Laura will need another heart.

We are fortunate that at this point, re-transplantation remains a distant thought. Others are not so lucky and already know that they will need to be re-transplanted sooner rather than later – I can not imagine how scary that must be.

At some point in Laura’s life – hopefully when she is an adult, her heart will fail her. She will get weak and tired and breathless – she will go into Heart Failure. She will need to be listed for another transplant.

Laura’s donor family found it within themselves to donate the organs of their INFANT – if they could summon the strength for that, surely we will be able to find her an adult donor heart.

I am encouraged by other jurisdictions who are headed towards an Opt-out system of donation. This type of system does NOT mean that your organs will be donated against your will but rather that you will have the ability to make your choice when you are of level head and sound mind rather than in the throws of grief, anger and pain.


 

I long for a day when Organ Donation is unnecessary, when science has come far enough to allow for those in need of an organ to survive on machines or altered genetic materials which someone did not have to die to donate. I long for a day when those whose hearts fail them don’t have to endure toxic medications for their entire lives to keep them going.

Until that time comes, however, I urge you to consider the possibility of donating your organs. In death, you can give life. Laura is a shining light and we do our best every day to honor the gift that she has been given.

 

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