31
Dec
14

A YEAR IN REVIEW AND THANKS


Over the past year my blog has received thousands of hits and I have received many E-Mails from folks contemplating an organ transplant.  As any transplant patient transits the process it’s all about patient and their survival.  Fear, hope, and a myridrid of other emotions affect the patient and their families in additional to their health problems.  The fear of the unknown can be paralyzing. I am grateful if my blog has helped some of you in the process.

My transplant journey began 18 months prior to my transplant in March 1, 2011. It’s been almost 4 years since my transplant.   I was lucky because I was very healthy prior to transplant.  In June of 2011 the FAA gave me my pilot’s license back and that winter I was back on skis.  During the summer of 2011, only 120 days after transplant Nancy and I were spending a month in Canada.

During my journey I had no fear and envisioned a month out of my life once I received “the call”.  My vision was to visit the Gift of Hope facility (the local organ procurement center) on day 30. This vision became my reality; mostly because of my knowledge and faith. On April 1, 2011 I had a delightful lunch with the president of the Gift of Hope after a tour of their facility and meeting the people that made my transplant possible.  Today I have no side effects from my transplant except a big scar that has healed nicely as a badge of honor.

After 4 years of reflections I have two observations to share with you:

SEEK THE BEST MEDICAL.  GO TO THE BEST — Generally for most of us we have decent insurance.  Your insurance will pay for you to go to the very best providers in the world.  It also pays for you to go to the worst. It’s your choice.  If someone offers you a free meal of your choice for a co-pay are you going to choose a Big Mac or a 5-star restaurant?   This means you need to take PERSONAL RESPONSIBILTY. (Something that is lacking in our society but I digress)  You or a family member must research for the best care, you need to learn the system, the process and everything about your condition. NEVER wait for your local doc to make a recommendation for the best care.  You need to take the initiative. You and your family must take control of the events. You are going to control the events or the events are going to control you. Time is not your friend.  This is YOUR responsibility and if you don’t take this seriously you may not survive.

It seems that one of my missions in life is to steer my friends away from our local hospital where I am waiting for my first “good news” story.  The docs do their best at these local hospital but best isn’t good enough.  They tend to hang on to their patients too long. Often they are doing their patients a disservice.  When the patient finally make the switch to a Center of Excellence teaching hospital they usually say to the patient – “that’s where I would go”. (Which begs the question- why the hell didn’t you say that before?!!)  I think one of the dirty secrets out there is what the transplant centers refer to the Friday afternoon dump.  That’s when the local docs decide it’s time to pass on their sickest patients to a transplant center.

Of course, if every patient decided to go to the same “best doc” there would be long lines at Mayo and Cleveland Clinic with empty beds at Podunk Hospital. The good news for you is only 5% of the patients will be competing for the best!  95% never seem to take the initiative.

Are you part of the 5% or the 95%? Align yourself with the major league players!

“GIVING BACK” IS A UNIVERSAL DESIRE OF A POST-TRANSPLANT PATIENT.  I noticed this dynamic early.  A post-transplant patient has become a member of this “special club”.  It’s not a club we ever thought we would join but by virtue of our transplant we become a member.  We are all very grateful and we seek ways to give back to the next person in line.  In my opinion, we are much like a college alumni club where there is an overwhelming gratefulness and a zest for a new life.

This dynamic was the basis for us forming the Transplant Advisory Council at Northwestern and our on-line presence of (Transplant Village).  A group of us have made a huge difference.

Our Transplant Village board have given their time and talents selfishly. We formed a buddy program where incoming patients can team up with one of our board members that are post-transplant.  We have a Patient Assistance Fund – some money set aside to help those patients with special needs. In April we held a sold out event of 500 transplant patients and family members  where we celebrated 50 years of transplant at Northwestern We have initiated and seeded a $5.0 Mil endowment and last summer held the 1st Annual Chicago Sharkfest Swim. And we’ve raised significant funds for transplant research at Northwestern.  We have $1.5 Mil remaining to a $5.0 Mil goal! All the money we have raised goes to further transplant medical research at Northwestern. As a group, we are fulfilling our desire to give back by helping those patients waiting for an organ.

It has been a wonderful year and I wish you the very best for 2015….

Dan Dickinson

Visit our Transplant Village website at http://www.transplantvillage.org !!


6 Responses to “A YEAR IN REVIEW AND THANKS”


  1. December 31, 2014 at 5:45 pm

    Dan, you and Nancy have led so many of us through difficult times, with positivity, good humor, wise counsel and faith. I have tears in my eyes reading this, knowing how much it means to have you speaking out. Bless you and all who are part of your life. With appreciation and gratitude, Betsy

  2. 2 Kaya
    January 1, 2015 at 1:34 pm

    Dan,
    Your comments are an inspiration. Thank you for sharing!

  3. 3 Steve Roberts
    January 17, 2015 at 2:49 pm

    Hello,
    I received my gift of life 11/12/2012 after suffering acute allopurinol hepatoxicity(Gout medicine). I had been ill for only three weeks when I arrived at deaths door. At 57 and with a beautiful wife and two children, a girl 14 and a son 12 this was the last thing that I had expected to happen to me after a very adventurous life. My wife and I married late in life, her being an international flight attendant. Healthy and active all my life, business owner, advanced scuba, widely travelled and instrument rated pilot and lover of life. I also have made a complete recovery and have resumed my flying and all prior activities. I also agree in with Dan’s post as to the importance of selecting the best possible transplant facility, I chose the University of Virginia and they saved my life with a whole lot of help from God!
    Steve

  4. 4 tc
    August 22, 2015 at 11:34 am

    Hi Dan, Kudo’s on a very informative blog. I’ve recently started a blog for people who have had
    TIPS surgery, which I found out is a step toward possible liver transplant. Hope you don’t mind my sharing this link. My feeling is the more we know, the better off we are. Thanks so much and much continued health. Best, TC: http://tipssurgery.blogspot.com/

  5. 5 tc
    August 22, 2015 at 11:34 am

    Hi Dan, Kudo’s on a very informative blog. I’ve recently started a blog for people who have had
    TIPS surgery, which I found out is a step toward possible liver transplant. Hope you don’t mind my sharing this link. My feeling is the more we know, the better off we are. Thanks so much and much continued health. Best, TC: http://tipssurgery.blogspot.com/

  6. 6 Penny Carson
    February 27, 2016 at 12:40 am

    Hi to Dan and his Family. On occasion I come back to your page it reminds me that there are many good people in the same position and good things do happen. Thank you for all you are doing for many.


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