By Bob Aronson
The population of the United States is about 320 million. Of that number 120,000 are on the national organ transplant waiting list. 22 of them die every day because there are not enough organs to go around. Numbers, just numbers. We hear them so often they are meaningless. But the numbers aren’t meaningless to the Husband who just lost his wife because there was no kidney for her, or the child who lost her dad because there was no liver. These numbers represent human lives, You or someone you love could be one of them some day and I know that from personal experience.
I was a broadcast journalist in 1967 when Dr. Christian Barnard performed the first heart transplant in South Africa. I remember telling one of my reporter colleagues that it was a really big deal because it would someday save thousands of lives. It never occurred to me that 40 years later I’d be one of those who benefited from Dr. Barnard’s pioneering efforts. I had a heart transplant In August of 2007
So don’t ignore those numbers because all the numbers have faces and names and feelings and they are scared and alone and in need. Right now 22 families are grieving, many children are being told that mommy or daddy won’t be coming home again. A parent is being told their 12 year old won’t survive the night. We are talking real lives here not just numbers. There are people out there, real honest to goodness people who just lost someone because there was no organ and they are so stricken with grief they cannot function. There are nurses and doctors who have to tell families that because there was no organ their loved one died. That means over 8,000 people die every year waiting for an organ transplant that never happens and every one of them is loved by someone. Every one of them will be missed. Many of them may have had great futures, we’ll never know because a whole lot of Americans just didn’t get around to becoming organ donors.
How can that be? How is it that a nation of 320 million people can allow 8,000 of their friends and neighbors to die when the solution is so simple and I mean really simple. You don’t even have to leave home to do it. You don’t have to get out of your damned chair. Just open the laptop, or turn on the desktop or say, “Hi Google,” to your tablet and you will be registering in mere moments. Keep reading and I’ll explain exactly how to register and save lives and you can get to feel really good about yourself.
First, chances are pretty good that you want to become an organ donor. You just haven’t gotten around to it yet. But, if you haven’t yet made up your mind think about this. Why take perfectly good organs to the grave with you when they could save some lives? Up to 60 lives can be saved and/or enhanced by one organ donor who is in good health.
Many organs can be used to save a life. In fact, one person has the potential has save up to eight people. Tissue donation can help more than 50 people and eye donation can restore the sight of two individuals. Here is a list of organs that can be donated: Lungs, Heart, Liver, Kidneys, Pancreas, Small intestines and skin (yes, skin is an organ).
While not organs, there are many other body parts than can be transplanted as well including Corneas, Heart Valves, Bone, Saphenous veins, Cartilage and ligaments to name a few. http://www.organdonor.gov/awareness/organizations/local-opo.html
So what’s the Problem? Well, there’s more than one. About two million people die every year but many of them are not organ donors. Also a large number of people who die have damaged and therefore non transplantable organs.
The biggest problem we face, though, is procrastination. In case you don’t know what that is it is when you see that mess in your garage and say, I’ll get to that tomorrow, but tomorrow never comes. Polls and survey’s tell us that in excess of 90% of all Americans think organ donation is a great idea, but only about 40 percent actually become donors. And in some cases, not many, but some families will object to recovering the organs from a loved one for transplantation.
So let’s ask the question again, What’s the problem? Well, sorry to say it Americans, but you might be a big part of the problem. If you are not an organ donor, why not? What good are your organs going to do if cremated or buried with your body? It’s time you not only thought about organ donation, but did something about it. If you are not a donor here are some ways you can become one.
The easiest way. Go to www.donatelife.net. You can do this one from right where you are sitting. It only takes a few minutes, then tell your family, your physician and your spiritual or religious advisor…and you are done. You can formalize the process by adding “Organ donor” to your driver’s license, but again, be sure to tell your family what your wishes are so there’s no confusion when and if the time comes.
If you are confused about the process call your local OPO (Organ Procurement Organization) There are 58 of them in the United States. For help in finding yours go to http://www.organdonor.gov/awareness/organizations/local-opo.html
Recently I had a non-organ donor tell me that while it wasn’t on his license he was still a donor. He said he had made sure that his attorney included his wishes in his will. Well, I’m not an attorney, but aren’t wills usually read after the funeral? By then it is far too late to recover organs for transplant. If you do nothing else…nothing at all…tell the loved ones in your family that you want to be an organ donor so if the time comes and they are asked they’ll be able to say, “Yes,” we know that’s what he wanted.
It is my opinion that one of the reasons people procrastinate is that they don’t see any urgency in signing up. They think, “I’m in good health, I plan on living a long time and they can’t take my organs until I am dead, so what’s the rush? It’s a good question. I’m sure the 30 year old man whose heart beats in my chest might have had the same thought at one time, but he signed up anyway.
The point is none of us know when we are going to die. I pray that everyone who reads this leads a very long life, but that’s not reality. Some will die well before “Their Time.”
So there is an urgency, both on your part and on the part of the recipient. Can you imagine what it feels like to be on a transplant list day after day, month after month, year after year, waiting for an organ, knowing you are dying and there’s little modern medicine can do short of a transplant. Think about that…seriously think about that for a minute.
Peter Curran and his wife Ashley know what that’s like. They live in Boston. Peter has been on the list for eight (8) years. 8 years — that’s mind boggling torture for both Ashley and Peter. They are friends of mine and oh so brave and upbeat, but as time goes on Peter’s liver isnt’ getting healthier and he is spending more and more time in a hospital bed because of complications. Peter Curran needs your help. Ashley loves her husband with every fiber in her body, she is an excellent caregiver, but somehow we — all of us, the medical system, the government — everybody is failing them. Why is there no liver for Peter? It’s because not enough people are donors. If you are procrastinating or know of someone who is, remind yourself or your friends of Peter and Ashley. He can’t work, he has very little energy or stamina. He’d love to go to work again, he’d like nothing better, but right now all he and Ashley want is for someone to donate a liver that matches Peter’s needs. Seriously, is that too much to ask, I think not.
Now some people don’t donate because they believe in the many myths surrounding organ donation. So let’s take that on, too, while we are at it. Here’s’ what the American Transplant Foundation has to say about the subject:
Myth: Age, illness or physical defects could prevent me from being a donor
Fact: Each person’s medical condition is evaluated at the time of their death to determine what organs and tissues are viable for donation. People living with chronic diseases or those who have a history of cancer or other serious diseases are still encouraged to join the donor registry.
Myth: If doctors know that I am registered to be an organ or tissue donor, they won’t work as hard to save my life.
Fact: The first priority of a medical professional is to save lives when sick or injured people come to the hospital. Organ and tissue donation isn’t even considered or discussed until after death is declared. ypically, doctors and nurses involved in a person’s care before death are not involved in the recovery or transplantation of donated corneas, organs or tissues.
Myth: If you are rich or a celebrity, you can move up the waiting list more quickly.
Fact: Severity of illness, time spent waiting, blood type and match potential are the factors that determine your place on the waiting list. A patient’s income, race or social status are never taken into account in the allocation process. Click here for more details about organ allocation by organ type.
Myth: After donating an organ or tissue, a closed casket funeral is the only option.
Fact: Organ procurement organizations treat each donor with the utmost respect and dignity, allowing a donor’s body to be viewed in an open casket funeral.
Myth: My religion doesn’t support organ and tissue donation.
Fact: Most major religions support organ and tissue donation. Typically, religions view organ and tissue donation as acts of charity and goodwill. Donor Alliance urges you to discuss organ and tissue donation with your spiritual advisor if you have concerns on this issue.
Myth: My family will be charged for donating my organs.
Fact: Costs associated with recovering and processing organs and tissues for transplant are never passed on to the donor family. The family may be expected to pay for medical expenses incurred before death is declared and for expenses involving funeral arrangements.
If you desire more information about the facts and myths of organ donation please visit. http://www.americantransplantfoundation.org/about-transplant/facts-and-myths/
Please remember when you hear 22 people die every day waiting for an organ that the numbers have faces and names and the smile and care and hurt just like you do. Remember Peter and Ashley and the thousands just like them. Register as an organ donor and feel like a live saver. That’s a pretty darn good benefit.
Bob Aronson is the founder of Facebook’s Organ Transplant Initiative support group and the founder and author of the nearly 300 blogs on Bob’s Newheart where you’ll find information on a wide variety of subjects related to donation and transplantation. http://www.bobsnewheart.wordpress.com
For the past week or so I’ve been writing about Hepatitis C, mostly in clinical terms. Today we begin to tell the human side of the story, the side that shows how devastating this disease can be and how it can bring out the very best in people. It is the story of a Boston couple — each has the disease. One far more seriously than the other.
Peter and Ashley Curran are my friends as a result of Facebook and Organ Transplant Initiative . They are two of the dearest people I know not only because of how much they love each other but also because they are friends to all who are suffering from Hepatitis C, their caregivers and to everyone else in the donation/transplantation community. These are two genuine, kind and loving people who face incredible adversity on a daily basis and never ask for anything.
The story you are about to read was written by Ashley at my request about her beloved Peter. She writes only of Peter’s disease but doesn’t even begin to touch on the many other hardships they have faced nor those they are facing on a daily basis. Ashley and Peter don’t have much, but they have each other and by God in my book that makes them the richest people on earth.
If ever there was a story of love and compassion and of giving yes, giving (Ash and Peter give till it hurts) it is the Curran story. Please, if you pray, say one or two for Peter and Ashley. God gets distracted once in a while with all that’s going on in the world so let’s give him a nudge and remind him that Peter and Ashley could use a little of his grace. It is people like Ashley and Peter who will get left behind as our national safety net gets ragged, torn and frayed.
More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.
Let’s start with a definition.
According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.
Hepatitis C, Peter and Ashley. A Love Story.
Written by Ashley Tenczar Curran
“You are going to need a transplant, your liver function is at about 10 percent”. I heard the words over the phone as my husband Peter and I were having our morning coffee. He had gestured for me to come over to the phone to listen in, and the words will never be extinguished from my mind. I did not know then, in my shock and disbelief, that a shadow had fallen.
Peter and I met in 2000, a year that I was finally leaving my devastating drug addiction behind, and starting over. I had moved into a rooming house in South Boston, where Peter had been a tenant for about 7 years. I wasn’t looking for love, especially in THIS wrong place. An overcrowded, “6 adults sharing the same bathroom” illegal “sober house” as it was advertised had enticed me because it was in good old “Southie”.
As I moved in, and was trying to carry my computer with one hand, doing a disastrous job of it, I heard a voice say “need some help?” I realize how stupid this sounds, but I married Peter that instant. He was 20 years older than me, and not my type at all. Laid back, calm, patient, and not overly talkative. I am the opposite. He helped me plug in my computer, and left. I had been hit by some type of Divine thunderbolt, and I had not felt that feeling in a very long time. We were facing insurmountable odds. He was just getting clean, tired of being “sick and tired”, and I was fresh out of a treatment program.
By all reasoning, we should have spent one week together and never seen each other again.
We should have died when we relapsed one time, several months after we met, to “try it one more time”, as if we had not destroyed out lives enough. All I remember is waking up with a needle in my arm, and seeing Peter on the floor , with a needle in his arm. We talked the next day, and loved each other enough to realize that we would lose each other if we used even one more time. We finally, after some 15 years pursuing recovery, were unselfish enough to lay it down, and never return.
But the past always comes into the present, it is inevitable. I had been diagnosed with Hepatitis C, like most people I know, young and old, who have ever used a needle while doing drugs. It is an epidemic of unimaginable proportions.
My virus was “undetectable” and remains that way to this day, 12+ years later. Peter did not fare so well.
When we first started dating, I was amazed to listen to stories from other addicts, both active and in recovery, telling me that Peter is the kindest and most patient person they have ever met. I say this NOT for the purpose of this story, but my husband has some kind of way about him that instantly puts people at ease. When my best friend Michelle overdosed in the room above ours, we tried to bring her back, and I wanted to kill the man who had given her the dope. Everyone who was there wanted to hang this man. Everyone except Peter. He got the man some soda, gave him a cigarette, and sat him down to ask him what exactly had happened.
I remember the guy saying “Why are you being so nice to me?”
I have tried to model my behavior after my husband’s, being honest almost to a fault, and at the same time I am angry that I am not the one who is sick, that he , the patient and loving one has to be the one to go through the horrors of 22 medications several times a day, 3 years so far on the transplant list, (UNOS), and very little family support (They were attentive and supportive at first, but now that the drama has settled, and they know it could be many more years before Peter gets his Gift of Life, they have gone on with their lives, and do not even invite him to family events anymore)
Peter does not get angry.
This is how I know that God will give him a transplant. This is not wishful thinking, because if you knew Peter, truly knew him, then you would know this also. He has a higher purpose, and God is not done with him yet. He met a nurse, albeit a “disgraced” one, (me), who is 20 years younger than him, and who loved him from the first time she clamped eyes on him. He is my “Brad Pitt”, even in his weakened state. I find I love him more , the sicker he gets. The fight he puts up, the appointments, 4 in the past 2 weeks, and the humility he shows, the polite character he prides himself on, causing doctors and nurses to say over and over again “I wish I had 100 of HIM!”
Hepatitis C is overlooked. That is a FACT. So many young people are being diagnosed right as I type this, and the organ transplant lists, particularly the liver, are getting longer and longer. People are dying from a disease that is completely preventable, and that has a vaccination available! Soon we will find that our young people are gravely ill, (we can see it now), and that scares me. Peter said if he had a choice, he would give his liver transplant to a young person, as he has lived his life.
A lot of people think that “junkies” don’t deserve transplants, because “they did it to themselves!”
Well, to that I say “so cancer patients who chain smoked for years don’t deserve chemo and radiation, and costly experimental procedures because THEY “did it” to themselves? So many diseases ARE the result of something “we have done wrong”.
The real shame is the stigma that society attaches to drug addicts. One person told me “taking pills is ONE thing, but putting HEROIN in your ARM with an IV? That is ridiculous!” More people die from a combination of narcotic pills and another type of pill, typically a “benzo” like Valium than do from a heroin overdose (I.E. Oxycontin).
I don’t know what the future holds for my husband, or, for that matter, for me. But every day I remind him that God loves him, and I love him. We tell each other every day. Though we did that before he got sick, it resonates even louder now, because I could, in reality, be counting down the days that I get to hear his voice, and see his chest rise and fall, knowing he IS breathing, as I do so often.
Please consider being an organ donor. There are so many people suffering like this, and putting their best foot forward to patiently wait for their turn. My husband, I believe, is the most patient “patient” that Beth Israel Hospital has ever had.
After three years on the waiting list, Peter and Ashley are considering looking for a living liver donor. If you have an interest in helping this couple you may contact them directly on Facebook or leave a message here and I’ll make sure then get it. Please everyone, if you pray,say one for Peter and Ashley.
Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.
You may comment in the space provided or email your thoughts to me at firstname.lastname@example.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to email@example.com and usually you will get a copy the same day.
Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.
This is a guest blog written by Ashley Tenczar Curran of Boston, Massachusetts. Her husband Peter desperately needs a new liver. He has been on the national transplant list for two and a half years. Ashley is a dear friend of mine and an administrator of my donation/transplantation Facebook page, Organ Transplant Initiative (OTI).
Heroes of Hope
So often I will read , with sadness, an obituary of a friend or relative that says: “He/She lost their battle with ___(disease the person suffered from) and passed away “.
I will hear people speak of this person as if they stepped away from the pitcher’s mound, defeated, and limped home to sulk in their bedroom. “They are at peace, they struggled, but now they are home”.
When we speak of a person who has been waiting on a transplant list, however, I know that I could never say they “lost” any battle, for we who have been caregivers know that this “battle” that is waged on the human body is like no other. An organ has failed in the body, yet this person is alive.
When I really stop to contemplate that, it is an awesome responsibility that the patient and caregiver take on when they and their transplant team decide to be “evaluated for possible placement on the transplant list”.
First off, the fear of the transplant itself kicks in, for though research and technology has come a long way, especially with mortality rates and the new generation “cyclosporine” anti-rejection drugs that have given transplant recipients much longer survival rates and less time spent in the hospital, but the operation itself is mind boggling. I cannot even imagine, even after over 2 years of waiting on the transplant list with my husband, saying “goodbye” to him as they wheel him in to the surgery of a lifetime.
While one is waiting and being evaluated, there are dozens of medications that have to be prescribed, filled, changed, renewed, filled again, and taken every day. One cannot “skip” a medication that is basically functioning as your heart, liver, kidneys, and so on. I was a health professional for over 6 years, and I have trouble keeping track of all of these pills, even with all of the devices and alarms, computer programs and other ways to organize them. We struggle every single day to keep this “battle” going.
A supply of these meds has to always be on hand, and I will bet I am not alone in having dealt with hte “on call” doctor who has no idea who we are, and has to read all about our loved one in less than a minute and make a potentially life changing decision on a Saturday night to continue this ritual of keeping what is left of the organ functioning.
While one is being evaluated, the treatment must continue, and it does. Paracentesis (withdrawal with a long needle of accumulated fluid around the abdomen), Thoracentesis, (fluid withdrawn in much the same procedure around the lining of the lung), Colonoscopy, Endoscopy, Cat Scans, Ultrasounds, and dozens of others, just to name a few, have been our life for the past two years.
We are the lucky ones, however, with just the feeding tube in place or my husband, because some people need to be on continuous treatments, such as dialysis, breathing machines, oxygen, and so many other life preserving therapies.
Many of these are painful, and exhausting. Yet somehow, some way, we find the will to go on.
We wait one more day, one more hour, praying that someone will pay attention to the “battle” going on in the hospital room, or home, of our loved one. We pray that someone, somewhere, will go online, or to the Registry of Motor Vehicles, and fill out that form to become an organ donor “now” , rather than “later”.
Caregiver and patient, family, friends,chaplain support, medical team assistance,(and of course, humor!) all combined to keep just ONE life intact. It may seem foolish to some, when thousands are dying around the world of starvation, earthquakes , and other disasters and tragedies, but when it is your husband, your mother, father, brother, sister, or otherwise, it is the most important life there is.
This is humanity at it’s best.
This is the reason I cannot understand the missing piece of it all. Where are the organ donors? The rate of donation is astonishingly low in almost every state!
Of course there are plenty of stories I could pull at any given day from the media/ net, (or from having been in the “OTI” (Organ Transplant Initiative group on Facebook), personal stories of dear friends ),of the strength and courage of a living donor, or a deceased donor, who puts forth their life and everything that entails, and gives part of it to another human being. These stories are real, and I don’t want to underscore those absolute heroes who give freely of their own body so that another person, be it stranger or loved one, can go on and complete their life cycle.
But I cannot for the life of me understand why the rate of organ donation is so low! People always talk about charities, and non-profit organizations that they are involved in, and how the recession has caused them to have to “cut back”: but here is a place to give a MILLION BUCKS, without having to spend a dime, to someone their life back, and yet there is a negative response from so many.
I have heard so much in the last couple of weeks about “James Whitey Bulger”, the “big and scary gangster” from my home of Boston, and 24/7 media coverage about a man who murdered 19 people, who took AWAY 19 lives, and while my sympathy is with the victims of this coward, I cannot stop and compare the statistic of the number “19”.
19 people die every day in the U.S. from lack of a life saving organ.
Imagine if all of that senseless and repetitive coverage of a man who will problably never see justice shifted, and turned to something positive, a push for new organ donors to register, stories of the lives of those who have “been in the battle”.
Whitey, I dare say, would have a fit. It would be like the devil himself losing the attention of the world.
I flip through the gauntlet of these “reality shows”, from the industry of crab fishing (Deadliest Catch) to saving whales, (Whale Wars) , parking meter attendants and their exciting life, (Parking Wars) and medical shows about “real life” medical emergencies, but not ONE show about Transplants.
What about the “Transplant War”?
Those who are winning it would love to talk about it.
Here is an opportunity for an “up and coming” reality show writer to really make their mark,but for some reason, this intriguing subject rarely appears on my TV.
What could possibly be more inspiring then a” transplant reality series”? The human epic drama about a war waged against your own body. The “altruistic” demeanor of the whole situation, humanity at it’s best, and worse.
The Gift of Life that is given every single day, to little children who pass away suddenly, and hearing from the heroic parents who can actually see past their grief for even one minute to think about another person’s child is nothing short of a spiritual awakening.
I believe the Organ Donation rate would double almost over night. I am an optimist, and when a particular cause is taken up in America, it spreads like wildfire.
The people who may have needed to see this “reality show”?
The man who got shot outside a pre-school in Boston yesterday morning thought he had plenty of time, he was about 21 years of age.
Those people who die in car crashes 2 miles from their home thought they had plenty of time also.
The persons who hide behind their “religion”, without even consulting their spiritual leaders on the subject, and say “I can’t be an organ donor because I am ___” (fill in almost any religion, because I have heard them all!) Amish, Jewish, Muslim, Catholic, Christian, …all of them are religions that absolutely encourage the individual to “follow their conscience” and to “support , continue, and pursue life in any way possible”. (The current Roman Catholic Pope’s words)
So, in closing, If you ARE an organ donor, if you have given of yourself, THANK YOU from the bottom of my heart, and dare I speak for those I know, and those I love. You will be rewarded, and you have my undying respect and love, whether you are alive or deceased.
If you have not “checked it (organ donation) out”, NOW would be the time.
If you are waiting for an invitation, I just sent you one. No need to RSVP, just go to the United Network for Organ Sharing’s website (UNOS.ORG) for more information, and to sign up online, or for locations on where you can sign up in person. You can also become a donor on line by going to http://www.donatelifeamerica.com or by calling your local Organ Procurement Organization (OPO)
Oh, and “NBC, CBS, FOX, DISCOVERY CHANNEL, A+E.”…if you are watching, call me. (I don’t have your number, and have not the faintest idea how to get a hold of you)
I have a great script for your first episode of “Transplant Wars”, and the name of the first episode is “HEROES OF HOPE”.
This name is because the transplant recipients, the organ donors, the caregivers, the medical teams, the researchers…they really are “HEROES” of “HOPE”. My heroes.
*Thank you to Bob Aronson for being our “hero of hope”. He has been there for my husband and I for over 2 years, since the minute we met online, and we could never repay him for his support and love during this “battle” we are going through that seems to never end. Anyone who says you can’t make life long friends on FB hasn’t met Bob. Come join our group, “OTI” (Organ Transplant Initiative), you will be made to feel right at home!
Please view our two brand new video “Thank You From the Bottom of my Donor’s heart” on You
Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4 This video was produced to promote organ donation so it is free and no permission is needed for it’s use.
Another important video is “A Transplant for Nurse Lori” this brave woman has Multiple Sclerosis and needs help paying her share of the bill for a procedure that can halt the disease in its tracks and even reverse some of it. Watch the video at http://www.OrganTI.org.
Also…there is more information on this blog site about other donation/transplantation issues.
We would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.
You may comment in the space provided or email your thoughts to me at firstname.lastname@example.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love