I am following, with great interest, the story of the 10-year old girl who is in dire need of a lung transplant due to end-stage cystic fibrosis. It is a tragic story that tears at the heart strings. It is always gut wrenching to hear about a child who will likely die from any disease. Unfortunately, it happens every day. As a parent I cannot imagine the horror of watching your child get increasingly ill and know there is nothing you can do to save them. Knowing they will die without a miracle ...... or a transplant.
However, I'm sure my parents could tell you how it feels. I'm sure my parents could recount the shock and horror at learning I will die without a kidney transplant. I'm sure my parents could tell you about catching their breath every time I get sick or am just not feeling well. Wondering if today will be the day I am hospitalized, possibly beyond hope of recovery. I'm sure my parents could give you some insight into how it feels to wait with baited breath at every phone call from my house-will this be the call that her heart stopped beating or that her blood is completely poisoned? I'm sure my parents could tell you what it is like to go through everyday praying for a miracle before it is too late.
Or how about my young-adult daughters, always reliant on only their mother, just starting their own lives? Do they fear losing their chance to have my support and advice as they begin their journey? In their nightmares, is there an empty seat on their wedding day?
Or, let's ask my my not quite 3-year old granddaughter how she would feel about losing her maw-maw? Never getting another hug or tear wiped away by her favorite person in the world. (Besides mom.) No longer benefiting from maw-maw's heartfelt words of encouragement or guidance?
Or me, ask me how it feels to have been a completely healthy adult, living a healthy life-style, taking care of myself physically and mentally only to be cheated out of the life I thought I would have. Ask me how it feels to know all the steps previously taken to ensure a graceful decent into my golden years were all for naught. The fact is, when I started dialysis, other than the kidneys, I was in excellent physical condition. The longer I wait for a transplant, the greater the chance further damage will be done to other parts of my physical systems and the greater the chance I will be less healthy over-all, left with new health problems to deal with as I age.
I highlight these things not to be cruel. As an end-stage renal disease patient with less than 7% kidney function, I completely understand the desperation of waiting for a transplant. I understand the annoyance with the rules, the regulations, the hoops that have to be jumped through. The waiting......the endless waiting. With two years in on the list and likely two more to go, I completely understand.
But here's the rub: when talking about transplant patients you cannot judge who will receive and who will not by simply feeling sorry for their case.
Every life is important to someone.
Conservatives and small government folks calling for Kathleen Sebelius to intervene are missing the irony. The same folks who decry the interference of big government in healthcare, in the form of Obamacare, are begging for that same big government interference in this case. If you want the rules bent by one person for one person, there is no better definition of government interfering in something they have no business inserting themselves in. The fact is, organ delegation is not determined by big government, but a whole host of medical professionals. There are many factors that go into the process, but for simplicity, it boils down to this: organ donation is handled by a network that is run by doctors. Professionals in the transplant field. No, it's not run by your doctor. That is impractical; the system is run by many doctors and professionals that have to be objective in delegation no matter what the story is. It's also been run this way for years. This may look like Obamacare to you, but it's not. There are not enough organs to go around. That's it. If you want more people to live, more people must donate. Period.
I don't want Sebelius to interfere in this process. If she gets to decides who lives and who dies in this case, what prevents her from picking someone else over me when my turn comes?
It is clear many just don't understand the true problem.
If the story of the 10-year old girl breaks your heart, it should be your goal to encourage MORE organ donation. No matter how cruel it sounds, Sebelius was exactly right when she said, "Someone lives and someone dies." Why sugar coat it? It's the truth. Every time one person gets an organ, someone else doesn't and they die. The problem is not the limits and rules, they are what they are. We have to have some kind of process to follow. Often rules and hoops are arbitrary. Fair and unfair at the same time. As one who is actually waiting on a donation list, true unfairness is all the organs that are wasted every year that would keep someone else alive. This is where the real battle lies, not in bullying big government to do what you want them to do in this case.
Fairness, from the inside, depends on which side of the organ you are on.
I wish all the best to Sarah Murnaghan and her family. I hope and pray they get a lung. I hope and pray she lives a long healthy life.
I also hope and pray the same thing for me.