Archive for May, 2012


Update from Dan

Today will be a date that everyone remembers in the organ transplant world. My phone started to ring at 7:30 when the news broke on GMA this morning on ABC News. Facebook announced that they will serve as the interface for people to sign up for organ donation. This is HUGE. I have seen people die waiting for organs and it is totally unnecessary. Andy Trosper who is on our Northwestern board was interviewed by ABC Chicago today and the Gift of Hope, the organ procurement center in Illinois had a very busy day. This changes the paradigm, I’m not sure exactly how but it changes it big time. Here is the link for a New York Times article on today’s development.

So for the past month I’ve been very busy. I am in the process of forming and chairing an advisory board for Northwestern. The Foundation has been a great help and we’ve put together some very dynamic folks. It’s like motivating the alumni of a college. But in this case the alumni are a bunch of grateful transplant patients. Our first meeting went very well. The group is about half put together and our goal is to build something that will last and endure. I know we will be successful if we have other transplant centers wanting to emulate our efforts in a couple of years. As we went around the table everyone gave their story and why they were there. It was powerful and emotional and I think the Northwestern folks were taken aback. But think about it. Where are you going to find a group of more thankful and grateful alumni? I came up with my vision as a start point and now we’ll refine it as a group. We are putting this team together like we do in the business world. Great teams make for great achievements. It’s all about people….

We also had our first meeting of the External Advisory Board (EAB) for the Comprehensive Transplant Center (CTC). On the board are the directors of seven of the top tier transplant centers in the country, plus myself and one other business guy. Northwestern is a center of Excellence and surely in the top 10 in the country. Perhaps envy is too strong of a word, but the other board members from the best centers in the world had more than a healthy respect for the Northwestern program. It’s no different than running a business. Because of very strong and effective leadership Northwestern is doing stuff that is leading edge. It is an aspirant institution. And the patient is the one who benefits. It’s all about outcomes and there are hundreds of great stories to tell. Our focus was on the many of the research efforts and finding ways to fund them. That is where our advisory board comes into play. Bridging all of this will be fun stuff. Instead of “good to great” this is “great to even better”. Here is a sampling of only one of the most interesting studies

As for me it has now been 14 months post-transplant. I really don’t think about it anymore. I take one medication daily. My blood work remains very good. Genes have treated me well so I never had to worry about BP, Cholesterol or anything thing else. My liver numbers for AST and ALT or both below 20 and total beli at .5. In layman’s terms that is better than good. I got three ski trips in this winter and flying my airplane and it doesn’t get any better than this. I am pleased to have been accepted into a study at Northwestern to wean me off my only medication (Prograf). That means over the next year they will reduce the Prograf (anti-rejection medication) hopefully to zero. There is a 30% chance I’ll make it. If not I will know my new minimum which is a lot less than I am taking now. I am not aware of any side effects of either the transplant or the medication but over time Prograf can be rough on the kidneys. All is well….