Archive for October, 2013

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