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


2 Responses to “The Saga Continues”


  1. 1 Monica VanBeekum
    July 19, 2013 at 11:10 pm

    I found your blog when I was searching for a Donate Life logo to put on my Face Book page the day after my 18 year old daughter became a Live Liver Donor for her Aunt (my sister) also at Northwestern. My siste4r had Primary Biliary cirrhosis for many years and was doing well until they discovered the hepatic cancer. She was treated with the Therosphere and the cancer responded well but more lesions kept forming and they weren’t able to treat it anymore with out damaging her liver too much. She was on and off the list. We rushed down town twice when they called to say they had a liver and they ended up not working out. The week my daughter turned 18 she called Laurie and convinced her to evaluate her before she graduated high school because she had a tight timeline for the summer as she is starting nursing school at Marquette at the end of August. Laurie got the docs to agree and my daughter was approved. The transplant was supposed to happen 6-19-13 and we were there and ready to go when Dr. Baker was concerned about my daughter’s elevated liver enzymes. With lots of blood work, a liver biopsy and prayer they transplanted on 6-26-13. Both girls are doing well! My daughter is almost 100% and my sister is getting there. We go on 7-22 for their 4 week post-op. This has been such an amazing miracle!
    I can’t say enough about the entire transplant team as well as the nursing staff in ICU and on 7. Laurie called us at home three times a day for the first two days my daughter was home! Dr. Baker and Dr. A have been incredible.
    Your Blog helped tremendously to give me an idea of what to expect and you know it always helps to read someone’s experiences that are similar to your own!
    Good luck and Thank you!
    Monica VanBeekum

  2. October 16, 2013 at 7:44 pm

    Dan; I just found your blog and want to congratulate you on your efforts. I, too, am a blogger and originally from you neighbor state, Minnesota. While I have not read all your blogs yet, I’ll work on it. I’m a heart transplant recipient and am always looking to learn more about other organ transplants and, of course, for new blog topics. Thank you for your commitment to the cause
    Bob Aronson
    Bob’s Newheart on WordPress


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