Today is Independence Day – the 4th of July – where we in the US celebrate the birth of our nation. However, my cousin is celebrating a very different sort of victory today – a very personal Independence Day – his life.
This week, an epic life and death battle took place – in an operating room. The forces of good battling evil – in this case, the evil of a crippling genetic disease…and time. My cousin lost the genetic lottery, but this week…
Good won!
My cousin received a kidney transplant from a living donor after 18 months of not-so-patiently waiting. Thankfully, he didn’t have to wait any longer for a cadaver donor – a wait that was fruitless for my brother in 2012. My brother, Dave, died waiting. There aren’t enough donor angels who have earned their wings to go around.
My Brother
My brother needed a liver transplant. Because the liver can regenerate itself, live donors can donate part of their liver to recipients, and both will grow normal livers. Kidneys, on the other hand, don’t regenerate, but people can live with only one kidney, so living donors can contribute a kidney and live the rest of their life just fine.
However, in my brother’s case, he couldn’t have a living donor – even if someone was willing, and I was willing to be his donor. Why? Because when he became very ill and couldn’t work due to liver failure, he also didn’t have insurance. He was a long-haul truck driver and when you can’t work, you don’t have insurance – even if you had insurance originally. He worked his entire life, until he couldn’t anymore. Then, much to his chagrin, he had to enroll in Medicaid, the safety net to protect our vulnerable population. He didn’t like this one bit, but thank goodness Medicaid was available for him, because otherwise, he would have had no care at all.
But there was a catch – Medicaid only pays for cadaver donor transplants – not living donor transplants – because the cost of two patients is more than the cost of one patient. My insurance said that they don’t pay for voluntary surgeries of this type – and that the recipient’s insurance would have to pay. So – Catch 22.
My brother died.
There aren’t enough cadaver donors.
Let that soak in for a minute.
Dave died because someone who was already dead didn’t think ahead of time to donate their organs or perhaps didn’t know how much good they could still do after their death.
Eighteen People
Eighteen people die every single day in the US alone due to lack of an organ for transplant. Every one of those 18 people is someone’s loved one, a spouse, a sibling, a child, a parent – someone with a family that loves and needs them. Someone who didn’t need to die.
Like my brother who was also a husband and father.
Every donor can save at least 8 lives with vital organs and affect the lives of up to 50 more who need procedures like skin grafts or corneal transplants.
Eight. People. Will. Live.
Imagine giving the ultimate gift of life to eight humans, and joy to many more through saving their lives.
Just imagine.
If you could wave your magic wand and save those people if it cost you absolutely nothing – would you?
Everyone dies eventually, and many unexpectedly die every day. If you’re dead – YOU certainly don’t need and can’t use those organs anymore. But others can, and are dying, no pun, to get them. So please, PLEASE, consider becoming a donor. You can save the lives of many people, even as you earn your wings. Part of you can live on – providing life for others.
It’s a gift you can give with absolutely no cost to yourself or anyone you love.
There is no reason not to.
You have that magic wand!
Living Donors
And then there are the living donors. These people are true heroes in every sense of the word.
My cousin who had his transplant this week would surely have died waiting for a cadaver donor. He nearly died just waiting for his living donor to get through the qualification process and then be paired with another couple of people. The person willing to be my cousin’s donor didn’t match him, so they were paired with another recipient and donor who did match.
Pairing takes place when the person willing to be your donor doesn’t match you, so you can’t have their organ, but they match someone else whose donor matches you. So they swap.
In his case, my cousin and his donor were in Michigan, and their pair donor and recipient were in North Dakota.
The donor kidneys were removed first, beginning about 6 AM, then flown, one on Delta with the crew and one on a charter plane between Michigan and North Dakota, then helicoptered from the airports to the hospitals where the donor kidneys were checked out by the surgeons to assure they are undamaged after their flight.
You can see the temperature controlled organ transport case, below. It even got it’s own wheelchair!
After the kidneys were confirmed to be in good shape, the recipient surgeries began, late in the afternoon. It was almost 11 PM before the recipient surgeries were complete. An extremely long and emotion-filled 16-hour day to save the lives of two people where even so much as a sneeze would have meant that it didn’t happen at all.
My cousin who received the donor kidney is 41 years old, a single dad with two children. He has, in essence, received a second life – thanks to the two donors.
Living donors are heroes – angels long before they earn their heavenly wings. God bless those living donors who are willing to endure pain and sacrifice part of their body so another might live.
However, if we had enough cadaver donors, we wouldn’t need living donors.
Gift of Life Flag
In 2016, hospitals and transplant centers performing organ transplants began flying a Gift of Life flag when transplants are taking place. Seeing this flag signifies to the community that someone has become a donor, meaning that either a family, in the case of a death, or a living donor, has made a very difficult and benevolent decision, giving their organ and with it, bestowing life on another.
The Gift of Life flag flying as seen from my cousin’s hospital room, honoring both the donor and recipient!
I believe that the donor family receives the flag.
It’s a beacon of light…
A flag of hope…
You can read more about the Gift of Life Flag tradition here.
How Can You Help?
We often don’t think about organ donation until it hits home. When it does, it’s because a loved one is desperately ill and needs a transplant. We may not be able to make a difference to them that day, but one day, each and every one of us can make that difference through after-life donation.
Please, PLEASE, become an organ donor after your death. With more cadaver donors, we wouldn’t need live donors. Desperately ill people wouldn’t have to wait so long for transplants – unable to work, jeopardizing their family’s financial circumstances. Many lose their homes while waiting for a donor.
My brother’s home went into foreclosure, until I bought it out of foreclosure, affording him the opportunity to live there until his death. It hurt his pride and damaged his dignity, but at least he wasn’t homeless too. I couldn’t give him part of my liver, but at least I could salvage his home.
Most importantly, with enough cadaver donors, people wouldn’t have to die waiting. Some people are so ill by the time that a donor is located that they are, in a horrible irony, too sick to have the surgery.
Signing up for organ donation is easy to do. On your driver’s license, you can indicate your donor status. Furthermore, be sure your family is aware of your wishes, as well as your medical team.
Once you don’t need your pieces and parts anymore, donating them to someone who will die otherwise is the greatest legacy of life, of love, you can leave.
You can begin by reading about organ donation, how it works, and signing up at:
https://www.dmv.org/organ-donor.php
Have concerns? They provide a page to answer questions too.
You can also read about organ donation here: https://www.organdonor.gov/register.html?gclid=CMST6prR5tQCFce3wAodZpQKGg
I’m a donor. Are you?
It’s easy to be someone’s angel!
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Thank you Bobbi for this heartfelt plea. Organ donors can and will make a difference.
Yes, absolutely – the difference between life and death. And we all have it within our power!
Bobbie, I think this is something that more people need to be aware of. Your explanation was very helpful. May I ask others to go to your site to read it. I am also going to put it on our society page for others to read and learn. Susi
Please share everyplace that you can!
May I share your email with my family and friends? I, personally, had no knowledge about cadaver donors. This is valuable information.
Absolutely. By all means. Please share anyplace and everyplace.
I’ve been registered as a donor since I got my first driver’s licence at 17. Since then, my own family has had reason to be grateful for donors and for the medical workers who make it all possible. Wishing your cousin and his family all the best this Independence Day.
Thank you for sharing the stories of your loved ones. Organ donation is so important!
I’m so sad and angry reading this. I live in Wales and here you now don’t sign up to be a donor when you die; you sign up to opt out of donation if you feel strongly about it. The default position is that you donate. And of course we have the remnants of the National Health Service, which pays for it all. Get campaigning to change your law like us!
Thank you for all this wonderful information….so needed. I will pass it on.
Have been a donor for years. Am also a recipient of two corneas due to my genetic disease, Fuchs’ Corneal Dystrophy. Many thanks to my two donors for the gift of sight.
Your words so beautifully put will change lives, will save lives. Your cousin is the father of my grandchildren. God’s miracle humbles us and brings joy I can’t begin to describe. May we tell the world of His grace.
This post just really grabbed me, Roberta. As I read this, the TV in the background was telling the story of Charlie Gard in England and the controversy over removing this baby with no hope from life support. Your brother could have been saved and we didn’t do it. It makes me so sad.Thanks for reminding us of the role of organ donation in saving lives.
Thanks for a very important post, which I will share. I signed up on my driver’s license to be an organ donor and I also registered on a registry with my state of Missouri. The only problem–as I’m older and starting to wear out, will I have anything worth donating by the time I die? I think they say skin is useful, too, so hopefully something of mine can be useful to at least one person when I die (though I hope I have several good years left–I have too much family history yet to do to die yet!)
I hear that!!! 😊 And yes, they do use skin.
I am told that even if an organ cannot be used for transplant, it can be used for teaching and practice purposes. After all, if a “would be” Dr does not practice before doing surgery, I would not want him operating on me. In the current practice of doing partial cornea transplants, which is 100 times better than a full transplant, they must know how to separate the extremely thin layers of the cornea of which there are five, altogether no thicker than a business card. It takes a lot of practice to successfully do this accurately.
Thank you for such a great article and bringing it to everyone’s attention. We have communicated before with my DNA results. I received a kidney from my sister 27 years ago. We were fortunate to match all HLA tissue types. My best wishes to your cousin.
I love, love, love this. I am a donor too!
Thank you for your article. It is a very important message and I hope that it will help to increase awareness of all donations. In 2013 my wife, Janell, was diagnosed with a rare and always fatal neurodegenerative disease known as Multiple System Atrophy – Cerebeller (MSA-C) predominant. Janell decided shortly after her diagnosis, that she wanted to help in some way. She decided, that upon her death, to offer a donation of her brain to the Human Brain and Spinal Fluid Resource Center, National Institute of Health Brain and Tissue Repository. She considers this a valuable gift.
It is important for everyone to know that there are instances when such donations must be well planned in advance and extensive paperwork completed. This was especially true for MSA because of the medical history that is required for the researchers. There is also a time element for harvesting of the brain after death. Planning and awareness are critical. My wife, now in hospice care, can no longer verbalize her needs beyond squeezing my hand for a ‘yes’ response. She is unable to write and care for herself. Her donation may help in finding a cure for this disease, but if she had waited she would not have been able to make that decision.
A long reply but hopefully a reinforcement of your message.
Thank you, your cousin through Phillip Jacob Miller.
I am so sorry to hear about your wife, but bless her for her very generous gift. May this bring both you and her some level of comfort in this most difficult time.
Is there an upper age limit for the donor?
I think it has more to do with health. A transplant center could tell you. Of course for after death donation, no limit.
Thank you for sharing this. You and your wife are to be commended for making this decision. I am convinced that my Aunt died of this very thing, however, she was never appropriately diagnosed. It was horrible to see her go from a fully functioning individual to being unable to do anything for herself in a matter of a few short months. So little seems to be known about this condition.
This is so very soul moving. And quite right on. I am an organ donor, Wynn, my husband, was on the Bone Marrow Transplant List for over 30 years, but no one ever called him. 4 years ago, after I got my new Driver’s License renewed and it was the first time he noticed I was an organ donor. He added his name to the list shortly thereafter.
I am also listed with final wishes that my body be given to science for brain and other study for aging. Decided to put up a memorial stone at my bio mother’s grave site and leave the rest of me to science.
Great Article as always!
As the recipient of a cadaveric kidney transplant I couldn’t agree more. Age of the donor should not be a problem. The current rules for matching recipients now calls for older recipients to receive transplants only from older donors. Since the current life expectancy of a cadaveric kidney is only about 20 years there are people who will likely face the need for a second transplant later in life if they were fortunate enough to receive one at a younger age. If you sign up as a donor the facility at which you spend your last days will determine which of your organs can be used. One donor can save multiple people.
What a heartfelt piece of writing. In my home country of Scotland right now, where they are going to make the organ donation option an easier choice (I think) by making it an “opt-out” on a driver’s licence rather than an opt-in. https://www.theguardian.com/society/2017/jun/28/scotland-to-introduce-soft-opt-out-system-for-organ-donations
My daughter is waiting for a heart and double lung transplant. We were recently told that in the UK legislation is under way which they refer to as “opt out”. This means that by law, unless a person signs an “opt out” each and every citizen of the country is considered an organ donor by default. Every person has then the same right to choose to be—or not to be—an organ donor, but unless they choose NOT to donate, it is a given that organs are available for harvest upon death. Would that the US should adopt the same policy.