Time to End The Disgrace — Some Tips

100,000 people waiting for organs, 18 dying every day and too littlle help is available.    Why is it that so many people are not organ donors?  How can these thousands of cries for help be ignored by so many when the effort to correct the situation is so small.  Just say, “yes” to organ donation when renewing your drivers license, it is that simple.

All of us ask ourselves what more can we do to increase organ donation.  Well, let me offer a few ideas on how to more agressively pursue the goal of zero deaths from lack of available organs.

1.   Ask your friends and neighbors if they are organ donors.  If they are not urge them to do so by helping them commit through Donate Life America or your local OPO (organ procurement organization). 

2.   Write letters to the editor of your local paper about the need for organs.

3.  Ask  your priest, pastor, Rabbi or other clergyman to include organ donation in a sermon or in the church bulletin.

4.  Write to, or talk to your elected representatives to encourage them to promote organ donation in all of their contact with constituents.

5.  Talk to your employer about including a note on organ donation in pay envelopes or in the company newsletter.

6.  Call  your local OPO to see how you can volunteer to increase organ donation.

7.  Call your nearest transplant center to see if you can be of help in increasing organ donation or volunteering your services to help transplant patients.

Because UNOS (United Network for Organ Sharing) is unlikely to change it’s policies regarding organ donation it it important for us to do whatever we can to encourage people to become donors.  The suffering of people who need organs is unnecessary.  If everyone became a donor we could end the suffering, the dying and the agony of the friends and families involved.  Please, reader, do your part.  I have offered but seven ideas, if you have more let’s hear from you.  This is a matter of life and death and allowing it to continue is a disgrace to all of us.

Can You Really Stand By and Let Someone Die?

By not making the decision to donate, you have chosen to let people die.  Picture yourself standing by a stranger’s bedside knowing you could save that life and choosing not to.  Do you want the responsibility of knowing you stood by and let a person die when you had the power to save that life? Do you?

My story is mild next to some I have heard, but my story is the only story I know.   So I want to fill you in on my long journey to get a heart transplant.  I died a couple of times along the way. 

I used to be a communications consultant.  My mom told her friends that, “Bob teaches big shots how to talk.”  My job was a little more complex than that but the description made my sweet little Italian mom happy and it was a fun story to tell.  As a practitioner of the “teaching big shots how to talk” profession, I traveled a great deal.  It was not unusual for me to be on a plane headed for somewhere once a week or more.  I became quite familiar with airports, cabs, hotels, meeting rooms and eating out.  Eating out regardless of how expensive the restaurant, was not a treat for me.  Chef Mario is Chef Mario whether you are in New York City or Duluth, Minnesota.  After a while, you would give anything for a taste of mom’s ravioli or my wife Robin’s 108-bean salad. 

My transplant journey began with a diagnosis of Cardiomyopathy (a form of heart failure) in 1995.  It still has not ended but I got a heart transplant in 2007 — twelve years after my diagnosis.  It was twelve years of slowly deteriorating health, more and more medication, several hospitalizations and less and less strength.  You see — you have got to be pretty sick before the transplant docs will agree to list you for transplantation.  You have to be dying. 

By 2005, I was no longer running through airports I was walking very slowly and stopping often.  I left more and more time between appointments and my lovely Robin volunteered to give up her life, so to speak, to travel with me and help with bags and carry-on items.  I had all I could do to walk through the airport and even that usually left me breathless.

When you have a chronic illness, one you know will only get worse, being sick is always on your mind especially when there are so few “good” days,  When 2006 arrived I was “faking it” most of the time with clients and friends.  I let my business slowly disintegrate until finally I had only two or three clients but they were clients in the medical field who had more than a passing acquaintance with heart failure and organ transplantation and they were aware of my condition. 

2006 was not a good year.  Each passing day seemed to bring on more difficulty getting around, more medication changes, more tests and increasing fatigue.  When I wasn’t working, and that was often, my whole life revolved around driving, freeways, parking, physicians, nurses, medications, tests, disappointments, small victories, insurance, medical bills etc.  Then, like the movie, “Groundhog Day,” it was all repeated the next day. 

Finally, one of my greatest fears was realized, I could no longer walk very far.  If I flew somewhere to work with a client, I would ask the airline to have a wheelchair waiting for me.   Sometimes I even had trouble walking to the wheelchair.  Breathing was becoming increasingly more difficult.  Sitting still was the only time I was really comfortable and I wondered how long that would last.  

Eventually, after endless tests and consultations, Dr. Jeffrey Hosenpud at the Mayo Clinic in Jacksonville, Florida told me I could be listed.  That was one of the few highlights in the process.  I could actually get listed. Then came the waiting when the days were 48 hours long and the telephone was never for me.  In case you haven’t guessed, waiting for an organ is an experience in suffering — physical and emotional suffering.  If you think for a minute that you get a diagnosis of heart disease and then all is fine until you get a transplant, think again. 

I knew I had a slim chance of getting an organ.  I also knew that no one, no member of government, no politician, no one — could do anything that would substantively increase the donor supply in time to save my life especially when you consider that I was 68 years old had COPD (Chronic Obstructive Pulmonary Disease) and a somewhat rare blood type, B positive.  Like many, I was subject to the luck of the draw.  The right person had to die in the right place at the right time. I was dying, I knew it and despite being the eternal optimist, I knew my chances of getting an organ were very, very slim.  “Frankly,” I thought, “Why should I get an organ when so many people so much younger than me needed organs, too, and they had a lot to more life to look forward to.”

Here’s one of those ugly truths that occurs to you like a bolt of lightning in times of great stress and usually when you need it least, “None of the people who signed organ donor cards can give up their organs to save me — because they are not dead yet!”   With the exception of very few living donors for a select few organs, and the heart is not one of them, you have to wait for someone to die.  Now isn’t that a reassuring thought.    

My family, like any family suffered with the wait, too. “Hi dad…any news yet?”  My wife had to live with it daily, she could see my condition deteriorating, she stood by me no matter what my mood, she knew there were no more drugs, I was already taking everything that could help my condition, and months earlier she stood by as I had three surgeries to implant ICDs (Implanted Cardioverter Defibrillator — a sophisticated pacemaker).  She waited as the doctors struggled to get give me life on two occasions, once they had to use the “paddles” nine times before the flat line on the screen started to jump again.  Can you imagine the effect on her after the first time I died – the horror?  Yes, the patient suffers, but I didn’t know I was dead until I was alive again.  My wife and family had to wait for what seemed an interminable amount of time, waiting for the doors to swing open and a Doctor to pop out with some word of how was doing. 

But I digress.  Here I am six months after my heart transplant writing blogs about the importance of organ donation.  I am absolute proof that there are miracles because after only thirteen days on the national organ waiting list, I got a heart from a generous stranger who is still unknown to me.  He was the right man, who died in the right place, at the right time, with the perfect organ for me.  I am still overwhelmed and will be eternally grateful to him and his family.  I will take good care of your heart sir, I promise! 

And so I return to what I started with.  If you are on the fence about becoming an organ donor there may be several people who are on the fence about living because of your procrastination.  What’s holding you back.  Become an organ donor for heaven’s sake…you have absolutely nothing to lose.  And — several families have their loved ones to gain.  Get off your duff! Become an organ donor and insist that everyone you know do the same.  I mean it.  I know where you live. J

Why I Blog

 I’m new at this but I blog (I guess blog is also a verb) because I am a heart transplant patient and want to increase the number of organ donors.  I always supported organ donation but until I developed heart disease it never occurred to me that I might need an organ.  Has it ever occurred to you? 

Did you know that one organ/tissue/eye donor can save or positively affect up to 60 lives?  There’s a slogan, “Don’t take your organs to heaven, heaven knows we need them here” that makes a great deal of sense.  We know how many people die every year while waiting for organs, but I wonder how many healthy, useful organs are buried each year because people didn’t understand the need or didn’t take the time to become donors.

Increasing the number of organ donors is a simple goal but impossible to achieve alone, so I started the Facebook group, “Organ Transplant Patients, Friends and You,” a group open to anyone interested in organ transplantation — anyone. http://www.facebook.com/group.php?gid=15612565382    

The need for more organs is well established.  LifeQuest, a Florida Organ Procurement Organization (OPO) that coordinates organ transplants, lists the following facts on their website: http://www.lifequestfla.org/

• As of August 31, 2007, there were 97,000 people on the national organ waiting list.  

• Roughly 17 people die each day waiting for organs (Bob’s note — that’s over 6,000 unnecessary deaths a year).

• A new name is added to the waiting list every 13 minutes.

• There were only 8,024 deceased organ donors in 2006.

• There were only 6,733 living donors in 2006 (Living donors are those who give a kidney or portion of their liver or lung to a relative or friend).

• In the year 2006, there were 28,923 organ transplants performed in the United States.

My life was saved on August 21, 2007 by a very generous, kind and courageous stranger.  There is a monumental need for many more generous strangers — millions more.  We can stop the dying, we can make sure that anyone who needs an organ gets one but we need to work together.  Please join our group, read, contribute, discuss and spread the word.  Someone’s life depends on it and it could be yours or someone very dear to you. 

My First YouTube Video

This video was done for Facebook’s “Organ Transplant Patients, Friends and You” group.  By way of this video we invite you to join the group and our efforts to increase organ donation.  

http://www.facebook.com/group.php?gid=15612565382