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 !!

 

04
Jan
14

November 2013 – The First “All Village” Event


Dan Dickinson introduction to Dr. Michael Abecassis, Chief, Organ Transplant at Northwestern Medicine

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.

26
Oct
13

Transplant Advisory Board at Northwestern Hospital


Here is the letter I sent out to the Northwestern transplant community this week:

Dear Friend of the CTC:

I appreciate your continued interest in the efforts of our Transplant Advisory Council (TAC) for Northwestern Medicine’s Comprehensive Transplant Center (CTC). As promised in my December memo I am updating you on our progress to date. There is much to report.

Our Council now consists of over 23 active council members. This is a group of very grateful transplant recipients, donors and family members who have the passion to give back after receiving the gift that has been given to them.

Our Logo

Our Logo

Our council is active and energized and our online presence is established through Transplant Village and our Facebook page. Please Join us – update your information so we can keep you informed of our activities.

To the best of our knowledge we are the only transplant center in America where patients, recipients, and champions have banded together in order to support the mission and future of the center. Now it’s time broaden the reach of our community and focus on growing our Village to advance the mission. Earlier this month the CTC has sent out a letter to most all former and current patients inviting them to be part of Transplant Village. We seek those who wish to be part of our mission.

On November 19, 2013 at 4PM we will have our first “All Village” event. You are invited. Three of our yearly meetings will now include the wider community of former and current patients, families, and friends. You are one of the “Villagers” and we want you to be part of this. Dr. Michael Abecassis MD, Chief if the Division of Transplantation will be our speaker at the November 19th event. I have attached an invite at the end of the E-Mail and also on the website. Dr. Abecassis will talk about the center’s ground-breaking transplant related research programs and the present state of the transplant program.

With our November event we will begin the celebration of something very special – next year is the 50th Anniversary of the first successful organ transplant at Northwestern. Since then there have been thousands who have transited our community. (In fact, this month the 1,500th liver transplant was performed) In celebration of this anniversary we are planning a brunch/luncheon event on Sunday, April 6, 2014 at The Westin, in Rosemont. Dr. Abecassis and his team will be making presentations. We are currently in the planning process for the event but want you to mark your calendars and be the first to know.

Our first 18 months of existence the council has had many successes. We have our communications platform with our web page and Facebook. Together with the CTC staff we developed the Case Statement which provides the rationale and justification for raising funds. Our Patient Assistance Fund (PAF) is established with its own policy and the money raised is to help those patients with special circumstances.card_tv_v3

We all belong to this “special club” with a very unique mission and we have the opportunity to accomplish something that has never been accomplished. We are well on the way to make a difference by establishing a sustainable platform for supporting transplant research and the mission for the benefit of future patients. We hope you will continue to be part of our group going forward.

We promise to keep you updated periodically on our activities and progress and appreciate your continued interest.

With regards,

Dan Dickinson
Chair, Transplant Advisory Council
(Part of the Philanthropic Ambassador Network)
Northwestern Medicine

Website: www.transplantvillage.org

Facebook Page (please “like” us for regular updates):

https://www.facebook.com/NMHTAC

TRANSPLANT VILLAGE
A Grateful Community United to Give Back to Northwestern Medicine Organ Transplant

MISSION: Our inspired group of organ recipients, donors and their families is united in our mission to support the future of organ transplantation at Northwestern Medicine while connecting and supporting the transplant community.

You are invited to the Northwestern Transplant Advisory Council Meeting on Tuesday, November 19th 4:00-5:30PM. The meeting is at Feinberg Pavilion, 251 E. Huron St, Third Floor Conference Center – Room A. The meeting is presented by Michael Abecassis, MD, Chief of the division of Transplantation. Please RSVP to Rachel Sass at 312-926-5426

21
Mar
13

The Saga Continues


Much has happened since I initiated this blog. My first post coincided with the day it was determined I was on the transplant list. From the beginning I was determined to chronicle my experience so the next guy in line had an easier time of it. I believe we’ve been successful in that regard. Prior to transplant it is all about investigating and a rally call to the journey head. Post-transplant it is overwhelming about gratitude.

My health is great. I am still flying airplanes and embark on another ski trip over Easter. I can truly say, without reservation ,that other than a scar I have no side effects from the transplant. Saying that, I have flunked my study. I am a patient in a study to reduce the anti-rejection drugs to ZERO. Everything was going great and I had reduced my Prograf from 6 Mg daily to less than 1 Mg daily. I was about to reduce to even a lower amount but my liver numbers increased which indicated a slight rejection. DAM! I thought for sure I was going to make it to ZERO but there was only about a 15% chance that would happen.

So now I am back to 6 mg daily and the liver numbers are perfect. I signed up for this and the result was predictable. But the good news is I have another bite at this apple! The protocol allows me to reduce again after being stable for 3 months. Soon I will be trying this again. My guess is I will reject again but the good news is I will then know my “new low” which I guess is about 1.5 mg daily, which is nothing. So, my medication regiment is still very easy. I am on Prograf and the obligatory baby aspirin. I have no problems with cholesterol, heart or anything else so I must have good genes. (thanks Mom thanks Dad)

The big news is about our Transplant Advisory Council at Northwestern. It is going very well. We’ve put together an incredible group of people – transplant recipients, family members, and organ donors. Our goal is to is to bring together the individuals and families of over 4,000 transplant patients that have been through the CTC in a non-clinical environment. We will build a culture of philanthropy to support the ground breaking research projects at the Center.

But the really big news is we’ve gone LIVE on our website which is at: www.transplantvillage.org . Take a look at our website ! But please pay special attention to the video!

Here is an E-Mail I sent today to staff, patients and friends today.

Dear Supporter,

The Transplant Advisory Board at Northwestern Medicine’s Comprehensive Transplant Center is pleased to announce that our website is now live. You can view the site by visiting:

www.TransplantVillage.org

Our Council has grown to include 18 members and consists of grateful transplant recipients, courageous donors, and supportive family members. We stand united in our mission to support the future of organ transplantation at Northwestern Medicine and our goal is to build a caring community of like-minded people to financially support the research efforts of the Comprehensive Transplant Center (CTC).

To date, over 4,000 people have received treatment through the CTC and have benefited from its groundbreaking research and programs. The fact is these very programs have saved the lives of several of our Council members as well as the lives of many others across the country. When you visit www.TransplantVillage.org, take the time to watch our video. It clearly illustrates our Council members’ desire to give back as well as the profound impact the CTC has made on all of our lives.

The immense gratitude we feel after being given a second chance compels us, on a daily basis, to help people that face the very same experiences we once faced. Now, our Council is bringing thousands of individuals that received care from Northwestern Medicine and others together in a non-clinical environment for the very first time through our website and also through our Facebook page: www.facebook.com/nmhtac

We understand that philanthropic support is critical for a research institution to thrive. We also realize that as a Center of Excellence, Northwestern Medicine has attracted amazingly talented professionals who are passionate about furthering the field of organ transplantation. By working together with the Northwestern Foundation and the University, it is our intention to help the CTC reach its fullest potential by developing a sustainable culture of philanthropy while uniting the transplant community at large.

As a supporter, you can take part in our village in many ways, from donating your time to making a contribution. All gifts are equally important and will enable us to continue the cycle of giving.

With regards,

Dan Dickinson, Chair

30
Dec
12

Friend Update- Transplant Advisory Council- Comprehensive Transplant Center (CTC)


As an update to our important work at the transplant center, here is an E-Mail I sent out to our “friends” list.

Dear Friend of the CTC:

I appreciate your continued interest in the efforts of our Transplant Advisory Council for Northwestern Medicine’s Comprehensive Transplant Center (CTC). As promised, I am updating you on our progress to date.

Our Council now consists of 14 board members all with unique talents. This is a group of very grateful transplant recipients, donors and family members who have the passion to give back after receiving the gift that has been given to them. Our Council has met monthly since April and we are pursuing various initiatives that fit within our shared vision.

As a Council, we work closely with the Development Office and the CTC to help raise money and to assist in building a sustainable philanthropy model that will enhance the center’s ground-breaking transplant related research programs. The CTC has grown into one of the premier transplant centers in America through the leadership of Dr. Michael Abecassis and we want to do our part to advance its mission.

We are currently in the process of reaching out to and building the CTC transplant community. Currently, over 4,000 transplant patients have received care from the CTC. Our Council will serve as the catalyst that unites this community in a non-clinical environment. We have an opportunity to accomplish something that hasn’t been done before. To the best of our knowledge we are the only transplant center in America where patients, recipients, and champions have banded together in order to support the future of the center.

During the first quarter of 2013, Dr. Abecassis will send out a mass communication to all patients advising them of our efforts and welcoming them to our website, which is currently under development, and Facebook page (URLs for these accounts are included below). The website will serve as a portal for individuals to partake in the community and to interact with other transplant recipients, donors and family members who understand the unique challenges they are facing. It will also contain information regarding the various research projects and initiatives underway at the CTC with links to the Northwestern Foundation and the CTC website.

The board has also been instrumental in writing the policy for the Patient Assistance Fund (PAF). The PAF is a fund administered by the CTC to help those patients who need special financial aid as they go through the transplant process. Some of our Council members have donated to this fund.

As we grow, there will be volunteer opportunities for the community. As an example, the Council concluded there was an unmet need for pre-transplant patients to have the opportunity to discuss the experience with those of us who are post-transplant. We are developing a working system with the CTC so this can be accomplished. The Council will serve as a conduit for these efforts.

The Council is also in the process of developing a CASE statement. I have attached a draft. The CASE statement is the document that provides the rationale and justification for a fundraising effort. The CTC is spearheading very innovative research and it is our charge as a Council to promote these incredible efforts.

We promise to keep you updated periodically on our activities and progress. Another goal is to arrange some type of social/fund and friend raiser event during the first part of 2013. In the meantime, we appreciate your support and interest in the continued success of the CTC.

Wishing you the best for the new year….

With regards,

Dan Dickinson
Chair, Transplant Advisory Council
(Part of the Philanthropic Ambassador Network)
Northwestern Medicine

Website (currently in beta to be changed to transplantvillage.org):

http://www.nmhtac.org/

Facebook Page (please “like” us for regular updates):

https://www.facebook.com/NMHTAC

TRANSPLANT VILLAGE
A Grateful Community United to Give Back to Northwestern Medicine Organ Transplant

MISSION: Our inspired group of organ recipients, donors and their families is united in our mission to support the future of organ transplantation at Northwestern Medicine while connecting and supporting the transplant community.

Case Statement 27SEPT2012.pdf




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