Posts Tagged ‘transplant

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 !!

21
Jan
12

Two Liver Stories


 I don’t think a week passes without being in contact with a “liver friend”.  I am in contact with some through friends and family.  At times the liver clinic will ask that I speak to someone while some come to me through this blog.  It’s a great alumni group – and we all fall in two groups.  Before and after.

Here are two stories…. 

A BEFORE STORY 

My “before” story goes to Paul.  Paul is in the Chicago area and about my age.  He is a fellow pilot, and fly’s the same machine I fly.  He is a retired school superintendent, not retired by choice but because of liver disease.  Paul has a rare liver disease called PSC.  Paul needs a new liver.  

Cadaver livers are distributed through UNOS from donors according to very strict guidelines.  Each potential recipient receives a score.  It is called a MELD score.  The higher the score, the better chance you have to get transplanted.  It’s all supply and demand.  The demand is greater than the supply. Through what I feel is a fluke in the system, my score started out very high and I wasn’t sick.  Not so with PSC.  Paul can be sick with no chance of a liver. 

This leaves Paul with the only probable option of live donor liver transplantation (LDLT) This is a procedure in which a living person donates a portion of his or her liver to another. The liver is the only organ in your body that regenerates.  A donor can donate part of their liver and it grows back in a matter of a few short weeks. When it comes to liver transplants the only “must haves” are size and blood type.  Of course, there are other considerations too, but not near as many as say a kidney transplant.

Paul’s story is compelling. Four people have stepped forward as potential donors, some of them strangers, to donate part of their liver.  So far all of been rejected for technical reasons.  Paul’s daughter has started a Facebook page where his story resides.  It is at http://www.facebook.com/FindPaulsLiver?v=info His daughter’s E-Mail is findpaulaliver@gmail.com.  Pass the word….

 

AN AFTER STORY

This belongs to Kortni.  Kortni is doing fine today after her transplant but she had a hell of a ride to get there.  Kortni had 2 transplants in 4 days.

Kortni is a young and vivacious young woman.  She had liver disease and her sister decided to donate part of her liver.  99% of the time this is successful.  Less than 1% of the time it doesn’t work.  While the surgery went well, the new liver did not start.  Like a computer that stalls with the boot up, Kortni’s new liver stalled out.  In aviation parlay she was out of altitude, airspeed and ideas all at the same time.

In these events, all stops are pulled out.  It’s a real emergency and you are automatically elevated to Status 1 – that means you get the next liver that comes along and jump to # 1 in the line. She got another liver and now is doing well.  Her transplant ooccurred after mine, so I was able to follow her progess through her blog and could relate to her daily progress.

Kortni’s story is compelling.  And you can read it at:  http://kkchoppedliver.wordpress.com/surgery-pictures/