How Do We Close the Organ Donation Gap?

I just read an interesting article by Dr. Andrew S. Klein, a former chairman with UNOS. He reveals the problems our country faces with organ donation. In 2011, there were more than 110,000 people awaiting transplants but only 28,465 transplants completed. How can this be and how do we narrow this enormous gap? (You can read his entire article here.)

A huge part of the problem is apathy towards transplants remains. The number of people affected by transplants of any kind has certainly increased over time but that fact hasn't penetrated the culture-at-large. While Facebook's initiative to increase organ donor registration is a great start, we need so much more work done on a local level.

This can include any or all of the following:

- Letters to the editor of your local papers, print and online

- Reaching out to local educational institutions, from high schools to universities

- Contacting local businesses to help with information outreach

- Booking speaking engagements with local community service organizations


Many of you know I'm writing a book about our personal experience with transplant. Part of my hope for this book is that it will touch people who've never thought much about organ donation/transplant. Awareness is certainly key, but action is required to make a dent the statistics noted above.

You could probably come up with your own list or add many items to mine. Feel free to do so and post a comment with your suggestions, or what you're already doing to advocate organ donation.

Real Heroes, Part 2: The Parents

This week's segment of Real Heroes focuses on the people who love those liver kids: their parents. These aren't just your average, everyday parents. These are people who must withstand regular bouts with disappointment; deal daily with many forms of stress; face extended time away from their spouse and/or other children; and who must be their child's advocate at every turn.

This post in no one seeks to take away from parents who are raising kids without life-threatening diseases. We all know how difficult it is to parent. Period. But I want to celebrate those heroes who  don't step out of the fire even when their bodies might be completely consumed by a poor prognosis, countless nights in the hospital and feel the strain on their marriage.

We've met many liver parents online and in-person. I'm continually struck by their tenacity, their vulnerability and their strength. They're willing to do ANYTHING in the best interest of their child. They're willing to RISK anything to insure their cared for the best way possible. 

Even these heroes need places to vent and meltdown on occasion. A real hero still needs someone to lean on. The strain of liver disease, transplant and the waiting, waiting, waiting would be insufferable if we all sought to do everything on our own. It takes a special person to acknowledge they need help and to seek it. 

The other parents who offer suggestions, share their own journey and walk alongside another families - they are part of this lineage of heroes. It's imperative we embrace each other no matter what road we're walking at the moment - initial diagnosis, awaiting a transplant, or post-transplant. 

Heroes are willing to sacrifice EVERYTHING for the people they love. That describes liver parents to a T. 

Could I Have Done Better?

I was contemplating life as I walked during a work break. I find  myself doing this often, for good or bad. Since I've started writing Sarah's story I find myself looking back at that time in our lives for good reason.

I also catch myself lamenting things undone. Or not done well.

I strive daily to not hold on to the past, to have no regrets. But sometimes a creative mind can be a double-edged sword. One of those times was today.

Looking back on the segment of Sarah's journey where she and Patty were at Children's Hospital for the bulk of two and a half months, I recalled what I'd done to keep my family intact and as healthy as possible.

It was painful to consider what happened. Sure, I'd started a new job two weeks before Sarah's initial diagnosis in November 2008 and was working hard not to give my employer a reason to let me go. They were very gracious and supportive throughout our entire journey and I remember them fondly.

There are things I don't remember so fondly. I wasn't present for my three older kids like I should have been, both emotionally and physically. It never hit me to work on getting Patty breaks from the hospital until well along in the journey. I tried to keep things afloat but in the end it's only by God's grace we didn't completely sink.

As it should be. When we think we have everything down, or that we should survive & excel through every trial in life, that's when we get hit the hardest. I know from a lot of prayer and personal reflection that Sarah's journey was a struggle but also a beautiful episode in our lives. We've seen the blessing that's come as a result but I still wonder: could I have done better?

The Things That Matter

I've been seeing the photos and news stories this week about the many fires burning in the western United States. I'm particularly stunned by the huge fire the Colorado Springs area. We have friends in the area and were able to visit there a few years ago. It's a gorgeous part of the country and to see the destruction wrought by these fires is heartbreaking. Thousands have been evacuated and many will lose their homes.

This is a sobering reminder about what is really important in our lives. Some of us grumble day to day about not being satisfied with this, or about someone who is always doing that. We can become frustrated at the most trifling things. And we begin to take life for granted. I doubt any person leaving behind their home is taking anything for granted right now. They might return to a pile of charred ruins. Their memories will forever hold reminders of their loss.

So, let us pray for the firefighters bravely waging battle against the flames and for those who have to evacuate, that no life is lost. Because in the end what really matters is what we carry in our hearts and the people around us.

Real Heroes, Part 1: Our Liver Kids

For those of us who live in the world of liver disease, we speak often about those who’ve impacted our lives for the better.  These people are our heroes.  I’m starting a series this week about these heroes. The first three segments will cover my own personal journey and a bit of Sarah’s story. The follow-up segments will include other liver families who’ve graciously offered to share their own stories. I hope to see you here often and feel free to chime in with your thoughts and comments.

REAL HEROES: OUR LIVER KIDS

It may seem odd to include the very ones most affected by the myriad of pediatric liver diseases. After all, they are often infants and toddlers. How they could be heroes? Ask any parent of one of these kids and you’ll discover why.

One of the most eye-opening things I witnessed during our journey from biliary atresia through transplant was Sarah’s strength and joy. You could never tell she was a sick by her behavior or sunny disposition. She always had a charming smile ready to brighten someone’s day. She wanted to play and see other people. And she loved her siblings so much.

Our kids exhibit qualities many adults struggle with or lack: perseverance and the ability to adapt to any given situation. Adults like to fool themselves into believing we can adapt to any situation but our liver kids resemble chameleons. Need to be poked several times per day for labs? No problem. Sarah reached the point she’d hold out an arm and say “pokie”. Have to sit there in the bed and be poked & prodded by doctors checking out their tummy? No problem. She’d just flash her trademark smile and generally let them do what they needed without complaint. These kids don't see uncertainty in their future, only the possibilities.

These little warriors seemingly ignore what lies before them, insisting that each day IS precious and to be lived to its fullest. We can learn so much from their determination and their unwillingness to give up. These kids are small but they fight well beyond their stature. I have yet to meet a liver child who doesn't have a beautiful and charming personality. It's almost like they're more concerned about the people caring for them then they are about themselves. That's love. That's strength. And those are only a few things that make them heroes in my mind. 

Saying Goodbye

It was a sobering weekend in BA land as we lost another precious angel, Riley. This little girl was a fighter. Those of us who live in the world of liver disease know what determination our kids carry as they battle various diseases. I like to tell Patty that these babies are so more resilient than adults. But these kids, they battle and claw and fight. Riley was at the top of that class.

She battled through not one but two liver transplants and may have received another if her little body hadn’t finally absorbed so much damage she was unable to go on. Riley was a little soldier, unwilling to just give up. She owes a lot of that attitude to her parents, who fought alongside her; who sang songs, prayed and refused to give up.

Each time we lose one of our precious angels it’s so painful. It’s more than a punch in the gut. It’s like a piece of us has been torn away and the wound will never heal. It couldn’t possibly do so.

But then you think of the little angels. I believe in God and in heaven where all things will be made whole again through Jesus Christ. The precious ones we lose are now free of pain, free of medication, free of IV’s and PIC lines, and all the other foreign things that invade their bodies on a daily basis when battling for their lives.

The wounds may be slow to heal but they will heal. Because we carry the special memories of these little ones with us for the rest of our lives. No matter how brief their stay with us, we have all been blessed to know them. Our lives would have been so different without them. We wouldn’t trade knowing Riley and our other angels for anything in the world. They are our priceless treasures, and like our other children, the very gifts of God.

Financial Incentives for Organ Donors?

There was an interesting discussion the other day in one of the online groups I follow. Due to the dire situation in our country of not finding enough organ donors, the issue was raised about whether we should begin offering compensation to encourage organ donation. I see this question as being primarily posed to potential living donors. Personally, this becomes a very gray area to me. And it opens a huge can of worms.

If we remove the altruistic reason for donation, do we really want to walk the road to where money talks? That's the case in so much of our society already, including donating blood. How much will this harm the entire case for organ donation? I can see it now: "Need some extra money? Consider donating a kidney for $XXX today!"

What are your thoughts about offering people money so they will donate a kidney or part of their liver? Do you see anything wrong with it?