Archive for the 'Northwestern Hospital Transplant Center' Category

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 !!

04
Jan
14

Transplant Village Grows !!


In the beginning this blog was all about me and my impending liver transplant.  On March 1st it will be THREE YEARS since my transplant.  For me it is like it never happened.  I am  flying my airplane, I ski and travel.  But life is a journey and its no longer about me…

Now the blog is all about others, the journey about Transplant Advisory Board and Transplant Village which I am honored to Chair. It has been great fun being part of building something from scratch that has never been done before. Now it’s all about the future of transplant medicine and helping the next guy coming down the line.

We held a soft kick off in November with an “open” meeting of the Transplant Advisory Council. All Northwestern transplanted patients (around 4500) were invited and we had no idea how people would respond. We received RSVPs for around 160 and nearly 250 attended! In all, nearly 400 people responded positively to the invitation to both attend the meeting as well as receive information about future activities. We are thrilled at the response!

Below are some videos from the meeting.  Immediately below is my introduction of Dr. Abecassis and an update on our activity.  In the same video is Dr. Abecassis’s update on the activities and future of Transplant Center and a high level over view.

Next are a couple of videos from transplant patients — those that have received the life saving gift and are leading a normal life.

The big news is we have another “All Village” event in March and our April Gala where we are expecting over 500 folks.  Stay tuned to our website at www.transplantvillage.org !!

 


26
Oct
13

Update from Dan


I am now 6 months shy of my 3rd anniversary of my liver transplant. They say one day I might die, but it isn’t going to be because of my liver! I have no restrictions to my daily activities. I ski, fly my aircraft and do everything I love to do. Life is good.

My medication consists of 4mg of Prograf daily and my 88mg baby aspirin. That’s it. Nada. Nothing for cholesterol, blood pressure or other ailments. Nothing in my blood work is the least bit out of balance. My labs are drawn monthly and on occasion the liver test is sent back for retesting. The liver numbers are so low (low is good) they suspect a lab error! ALT/AST are both around 10-12.

Dan and Nancy this summer in Canada

Dan and Nancy this summer in Canada

The 4mg Prograf dosage is the anti-rejection component and maintains a TAC blood level of around five. This is very low dosage/TAC level compared to most transplant recipients. My low dosage is the result of a study to wean patients from the Prograf to the lowest possible level. I was hoping to reduce my dosage to zero but at around 1mg/daily my liver numbers began to escalate which is the indication of rejection. The good news is I now know my personal minimum dosage which is the 4mg –half of what I was taking before I started the study.

In the beginning this blog was all about me. Now the blog is about the next person receiving a transplant at Northwestern. As most of you know we have put together a group to bring the Northwestern transplant community together. Officially we are known as the Transplant Advisory Council. Our online presence is known as Transplant Village. Our website is at: www.transplantvillage.org and our Facebook page is at www.facebook.com/NMTAC. Please take a peak and “like” us on Facebook.

Our mission is clear and our message is targeted. We are alumni of a very special club. And the gratefulness of our alumni has no boundaries. Our job is to support the future of organ transplant at Northwestern and to create a sustainable philanthropic platform. Institutional research is the key to unlocking advances to organ transplantation and Northwestern Medicine is on the leading edge of this effort. But it is only through philanthropic efforts that much of these efforts can be launched.

A great example of the ground-breaking research was illustrated this week with this clip that you may have seen on the news.

http://america.aljazeera.com/watch/shows/live-news/2013/10/kidney-transplantbreakthroughmayrevolutionizelifefororganrecipie.html

This is just one example but it involves stem cell transplant and resetting the immune system in order to eliminate organ rejection. This is amazing stuff!

Our Transplant Advisory Board is 18 months in existence, but we’ve made some great progress. On my previous post I have attached a copy of my “friends” letter which I recently sent out to many in the community which outlines our successes.

25
Nov
12

Late Update From Dan


Thanksgiving and Christmas is always a time of praise and thanks. And this year is no different. Reminding me this morning was a Today Show interview with a man that had received a heart transplant 20 years ago having been on the waiting list for several years. A twist of events changed his life. His daughter was in an auto accident and was brain dead. The unthinkable happened when the doctors told him his daughter’s heart was the perfect match. He is the only man alive having to make that decision to accept a daughters heart.

As for me I am as normal as can be. It has been 18 months since my transplant. Milestone came early for me. 3 days after the transplant they sent me home. 3 weeks later I was at back in my office. 104 days after my transplant the FAA gave my pilot’s license back and today I can still shoot a 200/half IFR approach. Last year I skied the Rockies several times and already bought my season’s pass for this year. And last summer Nancy and I spent the month of July on the Nancy D in the Waters of The Georgian Bay in Canada. So the residual effect of the transplant on me is nothing. Nada.

So my health couldn’t be Better. I am on a study to reduce my rejection medication to zero. it is a 2 years process reducing the Prograf and my Current daily dosage it 1.5 Mg per day. The Docs don’t even bother to measure the Prograf blood levels anymore because it isn’t perceptible. My only other medication is the obligatory daily baby aspirin. I take no medication for blood pressure or cholesterol and my blood work is just about perfect. With luck I’ll be off Prograf in less than a year. If successful, I will be one of the very few transplant patients in the world not on rejection medication. There is always a chance this isn’t going to succeed in which case I go into rejection. While this sounds terrible it’s not – my liver would enter a slow motion process where the liver numbers increase. That’s called organ rejection and the cure is a slight increase in medication. So, worst case I’ll know my own personal minimum amount of medication. At this juncture no matter what happens my medication level will be low enough not to register with my blood work. Since Prograf has a long term toxicity to the kidney this is a good thing.

So the focus has been off of me for many months and has been on others going through the transplant process. It seems every week I’m talking to someone about transplants. The vast majority of transplant patients feel an obligation to give back and offering their talents and resources to help the next guy through the process. Transplant recipients feel it is their obligation and honor to do so.

About six months after my transplant I was asked to Chair and form a board for the Transplant Center. Officially it’s called the Transplant Advisory Council for the Comprehensive Transplant Center at Northwestern Hospital. We’ve put together a great board mostly consisting of some very grateful transplant patients with varying talents. These are generally “Type A” accomplished folks that have a desire to give back and are willing to donate their talents and resources. Our goal is to raise money for various initiatives at the CTC. Northwestern is a research institution and it is these institutions that attract the best and the brightest minds in medicine. Northwestern is a premier research hospital and the evidence is the success of their initiatives.

Of course it takes money to fund these initiatives. There are three sources for funding. First are the internal sources through the University. Second are government and foundation sources such as ITN or NIH. Third are the philanthropy sources which is the focus of our board. A research project has to show promise before NIH or ITN funding kicks in. Somehow the project needs get from point A to point B and that usually means from private sources which is the philanthropy. Those donating money bet on the jockey and Northwestern Medicine is a very good bet, indeed.

So in order to attract philanthropy we first must build a community. Over 4,000 patients have had transplants at Northwestern and now we will bring that community together. Think of this as akin to your college alumni group. It is the grateful alumni who are critical to the long term viability of any institution. If the makeup of our board is any indication a transplant alumni association it will consist of people who are about as grateful as one can get.

Our communications committee has put together both a website and Facebook page. The website is at http://www.nmhtac.org. The Facebook page is at http://www.facebook.com/NMHTAC . These sites are in pre-production beta form but you should be able to get the drift. Take a look and let us know what you think. And if you want to be part of our group please let us know.

Over the next few weeks I will outline in my blog some information about the various research projects that are showing great promise. We are already growing mice livers in the lab. Pigs are next. Stem cells are showing great promise to grow organs on demand in the years ahead. And that’s just the tip of the iceberg so stay tuned!