April is Donate Life Awareness Month: What You May Not Know About My Transplant and Organ Donation

April is Donate Life Awareness Month!  Wear your blue and green!

April is Donate Life Awareness Month! Don’t forget to wear blue and green on April 19th!

April is Donate Life Awareness Month, where the entire month is nationally observed to honor everyday heroes who are/were organ, eye and tissue donors.  Before this year, I never knew Donate Life Awareness Month even existed, but obviously after having experienced a transplant first-hand, and a transplanted organ being one of the only reasons I am alive today, it is now a topic that is very near-and-dear to my heart.  I was twenty-six year old when I had my transplant.  Twenty-six.  If you told me the year before on my 25th birthday that in about a year and half I would be dying of acute liver failure and need a liver transplant, that would soon result in a deadly brain infection that would require two extremely dangerous brain surgeries, I would have probably laughed and said there was a greater chance of Nicki Minaj being elected President in the next election.  That just did not seem possible to happen.  To me?? Nahhhh…….

Ha.  Well it happened alright.  My life was normal, I seemed healthy, then the next thing you know I am jaundiced, blowing up like a balloon, and diagnosed with end-stage (IV) liver disease among a list of other things. Is this some sort of sick joke?  How could this be?  I was playing indoor soccer like two weeks? I’m not dying of liver failure, can’t be. After I smacked my face a few times and realized I wasn’t hearing some diagnosis from a scene on Grey’s Anatomy, I was like, “So where do we go from here, what can we do about it?” “Your only hope of survival is a liver transplant.”  Seriously? A transplant?  I asked how much time my liver had left, and I was told maybe a few months. (that was until my liver got nicked during one of my liver biopsies and then I got really, really sick, really fast).

I did some research and the average time a person waits for a liver is approximately one-year.  I did not have a year.  I was lucky if I had a couple of months.  I was admitted to Yale New-Haven on April 24th, 2012, and received my transplant nine days later on May 3rd, 2012, just one day after being on the transplant list.

Dream. Believe. Donate Life.

Dream. Believe. Donate Life.

When you hear the word “hero” it is often accompanied by the names of Martin Luther King Jr., Abraham Lincoln, Susan B. Anthony, Rosa Parks and many more that we have read about or heard of through family/friend’s stories, the History channel, books, articles, or online.  When I think of who my hero is, I don’t have to sift through memories or recall someone I learned about in Advanced Placement U.S. History class that I learned over a decade ago.  I have part of an actual hero inside of my body!  That is wild, and strange, and just completely mind-blowing to me that the surgeons at Yale cut me wide-open and put another person’s vital organ into my body, hooked-it all up, and that it works better than “my own” liver that I was born with.  Crazy.

Waiting for a donor organ can be a very stressful experience, since you have absolutely no idea when a matching donor will be available or if it will be available in time.  I met a gentleman several weeks ago who waited for 5 years, and experienced 14 false calls and trips to the hospital after being #1 on the transplant list before he actually had a successful match.  Can you imagine being told 14 times there was a potential transplant available for you, busting your ass to get to the hospital, to only be let down to know it wasn’t a match, and not knowing if/when a possible match would ever come in time!?  I was officially on the transplant waiting list on a Monday and received my transplant on that Wednesday, the same day that I made it to #1 on the list! That is practically unheard of!  Just another remarkable miracle that the angels were on my side, as you can see the median wait for each organ is listed below (http://organdonor.gov/about/transplantationprocess.html):

ORGAN MEDIAN NATIONAL
WAITING TIME
Hearts 113 days
Lungs 141 days
Livers 361 days
Kidneys 1,219 days
Pancreata 260 days
Intestine 159 days

Everything about a transplant is amazing and I want more than anything to be able to somehow express to my donor’s family how each and every night before I go to sleep I thank their son/daughter, boyfriend/girlfriend/ wife/husband, brother/sister, cousin, niece/nephew for my life.  I thank them because they have not just given me a vital organ necessary in order for me to live, but they have given me patience, strength, and courage.  They have taught me to appreciate all of the small things that I once easily overlooked.  They taught me that time is too precious and to become more adventurous and committed to try new things.  I have become more involved with the community, and I am actively trying to do little things that will hopefully one day add-up to bigger things and one day change people’s lives.  I was not just given a liver, I was given a purpose.

I have a part of this hero inside me, that saved my life, and I have no idea who it is.  That “unknowing” definitely creates this void within me that I do not know if I will ever be able to fill, but just like many other transplant recipients, I wanted to write a letter to my donor’s family. I never in my life imagined having to write something under these circumstances, but it was a very difficult and emotional experience for me.  After much struggle and tears I produced a very heartfelt, sincere, thank-you note that brought my family and even my social worker to tears upon reading it.  I cry just thinking about it, let-alone writing it, because it made me feel almost selfish, because I had life, and I was writing to a family I knew nothing about, carefully selecting my words to express my gratitude for their generous act of kindness.

It has been almost six-months since I have sent my letter to my donor’s family, but I have not heard anything back as of yet.  I do realize it has not even been quite a year since their loved one passed last May of 2012 and I am well-aware how emotionally tough that may be for their family considering how emotional it has been here on our end.  I am aware that I may never ever hear a response and will always be mystified by the name of my hero, but I would be lying if I said I did not hope to one-day know who they were.

Of course one of the first things I wanted to do when I was well enough and some time had passed was to contact my donor’s family to express my genuine gratitude for their loved one’s heroic act, but it is not that simple.  Being a donor is a confidential and all of their information is kept very private.  There is a regulated process in which you can contact the family of the donor via the New England Donor Bank (NEDB).  My social worker gave me the information to contact my donor’s family in which I wrote a letter and sent it to the NEDB.  They then read it to see if it is fit to send.  There is a very strict format as to not get too personal or give away too much of your information as to not give away your identity for confidentiality reasons.  I had to make some minor adjustments and resend to the NEDB.  Upon receiving an acceptable letter, the New England Donor Bank then lets my donor family know I have a written a letter.  The family then chooses whether to receive the letter or not.  If they do wish to receive the letter they than can choose whether to write back to me or not.  If they do choose to write back to me, they write a letter and send it to the New England Donor Bank.  The New England Donor Back then notifies me that a response letter has been written, which then I choose whether I would like to accept their letter or not.  If both parties do have interest in meeting one-day then I believe they can do-so through a governed process.  From what I have heard, it can be an awkward encounter since the act of donation may bring one party to feel grateful and indebted while the other may feel pained and anguished.

Whether the name and/or identity of my hero remains a mystery or not, they will forever be my greatest hero of all.  I know it is probably hard for many of you to fully-understand what having a transplant and all of the other complications (including my two brain surgeries that ensued), and how they have forever changed my perspective on life and who I wish I be.  All I really want is for just one thing I say sticks with you in a positive way, if not today, than somewhere down the road.

With our mayor, Mayor Boughton (Danbury, CT) at City Hall with the Donate Life flag which is raised for the month of April for Donate Life Awareness month (Left to Right: Mayor Boughton, my aunt Dana, me, my aunt Caryn, my grandmother Rose).

With our mayor, Mayor Boughton (Danbury, CT) at City Hall with the Donate Life flag which is raised for the month of April for Donate Life Awareness month (Left to Right: Mayor Boughton, my aunt Dana, me, my aunt Caryn, my grandmother Rose).

I have been a registered organ donor eight years before I got my transplant, just because my mentality has always been, “If I’m dead, what use do I have for my organs?”  It was a very thoughtless process for me.  Obviously, that is a personal choice of mine and I completely understand this decision might not be so easy for some people, and I respect other’s decisions in regards to organ donation, no matter what those decisions are.

What I do find very important is that you do make a decision either way, and act upon it.  Say you actually do want to be a donor, but just haven’t gotten around to it.  Just saying you want to be an organ donor and not taking the 3 minutes to register on-line frankly seems silly and lazy to me.  You might potential save the life of somebody and positively influence 50 or more other people just by putting down your Words with Friends or Instagram for 3 minutes and by going to http://www.donatelife.net and becoming registered, officially.

On the other-hand, some of you may choose to specifically not become an organ donor for whatever reason it may be.   One of the most common things I hear is that people believe they are not healthy enough or “too old” to be a donor.  Another myth I’ve heard is that people do not wish to have specific parts of their body donated including their corneas or skin, so they do not register to donate at all.  I have heard that many people do not want to donate organs because they they wish to have an open casket or be cremated.  Another myth I have found out is that people do not register to be donors because they fear that in a life-or-death situation, that emergency medical personnel will not perform the necessary medical procedures in order to save their life, rather so their body can be used for donation!  Finally, a myth that many may not be aware of is that you do not have to be dead to be a donor!  That’s right, you can be a living-donor for a single kidney, the lobe of one lung, a segment of the liver, a portion of the pancreas, a portion of the intestine, or a portion of the pancreas.

It is perfectly fine to choose to not be an organ donor, but please make those decisions based on the facts, not the myths.  While you may watch Dr. Oz every afternoon or have watched too many Holiday Inn Express commercials, you are not capable of diagnosing whether your organs are of satisfactory health level to be donated; only your doctors can.  Even if some organs cannot be donated, others may be perfectly legitimate to donate to save someone’s life. Remember, between the various organs and and tissues in the human body, one person can save over eight lives and effect the lives of 50 or more!

Secondly, you can throw the “I am too old to be a donor” notion right out of the window.  NO ONE is too old to be a registered donor.  The oldest organ donor, to date, was a 99-year old cornea donor, and the oldest organ donor was 93 years old!  Not only can you be ancient and still be a donor, but you can choose exactly which organs you wish to have or not have donated, it is not an all-or-nothing thing.  Remember, it is your body and your decision is completely up to you!  And yes, you can still have a normal funeral service with an open-casket and your body will not be “mutilated” as some myths falsely suggest.

If you are seriously ill, the number one priority of the medical team is to save your life!  The emergency doctors and nurses working to save your life are separate from doctors who perform organ transplants, and organ donation is only considered if brain death has been determined, so no, they are not going to let you die so your body can be donated.

Finally, and one of the most amazing things you may or may not know about organ donation, is that you do not have to be dead to be a donor!  As my time clock was winding down very rapidly last May, one of my best and most loyal friends, Jessica Fry, was about to get on a plane in South Carolina and fly up to Connecticut once she found out she was a potential match for my liver.  If that is not a bad ass friend, then I don’t know what is.  Luckily, just before I was about to make friends with the angels in the sky, one of the angels exchanged their life for mine.  It apparently wasn’t my time.

Now that I have provided you with some information about Donate Life and organ/tissue transplantation, hopefully you have a greater understanding about organ donation and being a donor, and I encourage you to take the 3 minutes to register online at www.donatelife.net right now.  I was extremely lucky, others are not as fortunate and die waiting for a transplant.  Talk to your friends and family and ask them if they are registered donors.  You have no idea what your someone else’s organs may do for you someday or how you might change someone’s life life my “hero” did.   “Don’t wait. Donate.”

There are many other myths, that you probably don’t know, but I will leave that up to you to research. Below are some statistically information about organ donation and transplantation that you may find interesting, which you can find on this website: http://www.organdonor.gov/about/organdonationprocess.html#process6

“A computer program matches donor organs with recipients based on certain characteristics.  These include blood type, tissue type, height, and weight. The length of time the patient has been waiting, the severity of the patient’s illness, and the distance between the donor’s and the recipient’s hospitals also figure into who is the best match for a specific organ.”

  • 117, 741 people are waiting for a transplant in the US (The largest football stadium in the U.S. holds almost 110,000 people)
  • 18 people die each day waiting for transplants that can’t take place because of the shortage of donated organs.
  • In 2010, 62% of living donors were women. The statistic is reversed for deceased donation.
  • In 2010, 67% of all deceased donors were White, 16% were Black, 13% Hispanic and 2.3% Asian.
  • As of December 2011, the national waiting list was made up of 45% White, 29% Black, 18% Hispanic, and 7% Asian.
  • Currently, more than 100 million people or 42.7 percent of individuals age 18 and older have registered to be organ, eye and tissue donors in the U.S.
  • The nation’s top percentage of donor include Alaska and Montana both with 79% and the lowest being New York at 13.3%.  Other states include Connecticut 39%, Florida 34%, South Carolina 27%, North Carolina 53%.

donate life logo

Data from: U.S. Department of Health & Human Servicetp://www.organdonor.gov/about/data.html and Donate Life http://donatelife.net/wp-content/uploads/2012/06/DLA-Report-Card-2012-350781.pdf)

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3 thoughts on “April is Donate Life Awareness Month: What You May Not Know About My Transplant and Organ Donation

  1. Great post. I was transplanted at age 23, 1 month. Thankfully I only waited 2.5 months. Hardest experience of my life. I haven’t heard from my donor family either and it’s been nearly 3 years… I too hope to know them. I owe everything to my donor. #donatelife 🙂

    • Congrats on your successful transplant and your continued health! Thank you for your comment, I really enjoy hearing from other transplant patients, and it’s especially nice to talk to people near in my age who can relate. I have added to follow you, so I look forward to reading your blog!

  2. Reblogged this on The MOtivational MOvement and commented:

    Today we met with the Mayor Boughton of Danbury, CT to hang the Donate Life flag at City Hall for Donate Life Awareness month where flags will be flown across the entire state for the month of April! Show your support for Donate Life on April 19th by wearing blue & green proudly on National Blue & Green Day!

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