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

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!




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