Archive for March, 2013

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