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