Archive Page 2

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!

01
May
12

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.

http://www.nytimes.com/2012/05/01/technology/facebook-urges-members-to-add-organ-donor-status.html

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

http://www.northwestern.edu/newscenter/stories/2012/03/kidney-transplant-leventhal.html

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….

02
Apr
12

Update on Dan and Harvey’s Story


Here is the amazing story about my friend Harvey.

In 2006 Harvey learned he needed a Kidney transplant due to a rare condition called PKD.  In 2007 he was fortunate to find out his wife was a compatible donor.  After a successful transplant Harvey founded a non-profit organization – Living Kidney Donors Network.

LKDN’s primary goal was to educate individuals about living kidney donation and prepare them to effectively communicate their need to family members and friends. The organization reinforces the concept of “telling your story” rather than asking someone to donate, a very subtle but very important distinction.  You see, the waiting list for a cadaver kidney is a very long list.  One can die waiting for a kidney. A live donor offers a different methodology –no waiting list. Yes, there are folks out there that donate live livers and kidneys purely for altruistic reasons. LKDN successfully facilitates this process.

Over the years, Harvey’s organization has been responsible for matching countless donors and recipients by teaching them how to go about finding a donor. He has saved many lives.  I recently met with Harvey.  Since I am in the process of forming the Advisory Council at Northwestern I was anxious to get input from Harvey.  Harvey was great help for which I am grateful, but then he dropped what was to me a bombshell.  He needs ANOTHER Kidney.

So here is the guy that teaches and has developed the “how to” guide on procuring a lifesaving organ for others and now needs one himself.  Harvey’s many friends in the transplant community got together and rallied behind him.  Using the techniques he teaches his friends put together a website for him.  And I’m helping to spread the word not only for Harvey but others as well.

Harvey’s Kidney Campaign can be found at www.harveyskidneykampaign.com

Information’s on LKDN can be found at www.lkdn.org

There are many living kidney programs in the U.S.  One of the best and most active are here in Chicago at Northwestern. Here is the information on their website: http://www.nmh.org/nm/kidney-and-liver-program-rankings

If someone is in need of a lifesaving kidney (or liver) there are alternatives.  But there is a secret to make it happen.  You’ve got to be your own advocate.  YOU have to make it happen and YOU must take control.  Last week I talked to an individual who needs a kidney but won’t take the initiative.  Unfortunately, unless he or family members takes charge there isn’t much that can be done.  The system will not do it for you.

Our prayers go out to Harvey.  He has lots of spunk, high energy and he is going to do well.

As for me, it has now been 13 months since my transplant.  My only medication is Prograf which is an immunosuppressant medication.  My blood work is perfect.  ALT/AST is below 20 and bilirubin runs about .5 so I am better than 95% of the general public.  No high blood pressure or cholesterol medication and the only non-prescription stuff I take is Calcium with Vitamin D and a baby aspirin. To me my transplant is a thing of the past– like it never happened.

Last weekend I did 2 things I enjoy most – I flew my airplane out to Beaver Creek to ski.  The skiing was a bit sloppy at 70 degrees but the flight was great (http://flightaware.com/live/flight/N847DD).  I came back at 17,000’ sucking on 02 and relaxing all the way dodging some weather.

My advice for those contemplating a liver transplant – you can come out of the other side with a full life to live.  It isn’t the end of the world by a longshot.  And only with a small amount of luck you’ll come out a better person both emotionally and physically on the backside.

In March I took all the tests to get me into Dr. Levitsky’s immunosuppressant study.  Officially it’s called Phase II trial to assess the safety of immunosuppression withdrawal in liver transplant recipients. Josh is one of the world’s experts on immunosuppressant as it applies to transplant. Google his name and you’ll see what I mean.  Josh is the lead on a study to eventually wean patients off of the immunosuppressant drugs completely.  It is a known fact that about 30% of the patients do not need immunosuppressant therapy. The problem is they don’t know why this occurs.

I volunteered. In March and went through the screening phase where they performed a liver biopsy and drew blood samples which are kept in cold storage for future evaluation.  Everything looks great and now I am waiting to find out if I am in the control group or the study.  1/5 of us will be in the control group and I hope it’s not me. I want to be in the withdrawal phase where I am eventually off the medication.

The downside is I could have a rejection episode.  The good news is a rejection occurs in slow motion over a period of time and is easily fixable.  It’s not a big deal so I am happy to be in the study.

But there are other ways to beat the immunosuppressant’s as well.  Dr. Joe Leventhal is head of kidney and pancreas transplant at Northwestern.  Joe is using donor stem cell infusion.  It “tricks” the system of the recipient body to believe the organ is parts of the patient’s natural self. Very cool.  Joe’s studies have received a great deal of world wide press recently.  You can Google it or go to http://www.northwestern.edu/newscenter/stories/2012/03/kidney-transplant-leventhal.html . In the not too distant future a kidney may not be needed to be a “match” in order to be eligible for a transplant.

Not a week goes by without me talking with either a pre or post- transplant patient.  This is a special club.  I suppose there must be a secret handshake.  I look at my discussion with these folks as an honor and obligation and hopefully I am helpful.  As a transplant patient you have the obligation to be your own advocate and that means asking lots of questions.

Keep it coming!

01
Mar
12

Happy re-birthday to me (la la la)


It was one year ago today that I had my transplant. So it’s happy re-birthday to a part of me.

I remember vividly when Katie, my transplant coordinator called me. I was at my office having decided that morning I was tired of waiting for a liver. Being constructive (and impatient) I was filling out my paperwork for my pilot’s medical certificate. Katie called and I put the paperwork in my “hold” file and sent some texts out to Nancy, Laurie, and Annie at 12:49 PM. “I think they found a liver, meet you downtown” I had been prepped for surgery on three other occasions only to find the liver wasn’t a match. This time I knew was different. I collected my stuff and stopped by Ric’s, my favorite hamburger joint. Katie forgot to tell me not to eat and I didn’t want to pass up the opportunity. (Yum) The liver didn’t arrive at Midway Airport until 10:30 that evening (I tracked it on the Internet) and they finally put me under around 1 AM or so. I was glad I had the burger.

March of 2011 was recovery time. It wasn’t a lot of fun. On April 1st I visited the Gift of Hope folks thanking them for all they did, and a few days after that I was in the office. On June 28th we left Port Kenosha on the Nancy D for the Georgian Bay area in Canada and I was back to normal – just like it never happened. By July 10th the FAA gave me back my Pilot Medical Certificate. In January I was skiing Vail. The transplant seems like a long time ago.

Over the past couple of days I’ve sent some E-Mails out to my docs thanking them again and to all those that helped me through the process. The list is long. No matter how healthy and strong one might be it takes family, great docs, and support – especially for the first couple of weeks after surgery.

So today we almost have our philanthropy advisory council put together at Northwestern working together with the Foundation. We have our first meeting in April. We have a wonderful group of very grateful alumni on our council. Our charge is to promote and attract funding for some of the research initiatives at the center. We intend to take these efforts to the next level and establish a process that is built to last. It has amazed me the number of very talented alumni who want to make a difference – making it easier for the next guy coming down the transplant line. And only my imagination limits me to what a group of extremely dedicated and accomplished individuals can accomplish when let loose supporting this worthy cause. This will be great fun to Chair this effort.

This week I had a very interesting meeting with the founder of Living Kidney Donors Network. Harvey Mysel has put together a very unique organization. LKDN’s primary Mission is to educate people who need a kidney transplant about the LIVING donation process and to prepare them to effectively communicate their need to family members and friends. Their website is at www.LKDN.org.

There are striking similarities between kidney and liver transplantation. A donor can be either a LIVE donor OR a deceased donor. A live donor can give up a kidney, leaving one remaining for a normal life. It’s the same with liver. In many cases a LIVE donor can donate up 60% of their liver and it grows back in a matter of a few weeks.

Harvey pointed something out to me and here is where it really becomes interesting….

Harvey did a quick search of the number of Liver Transplants, living and deceased: ++

TOTAL LIVER TRANSPLANTS++
Year 2011 2010 2009 2008 2007
Deceased Donors                                 614 5,614 6,009 6,101 6,070 6,228
Living Donors                                      226 226 282 219 249 266

NOTE: In 2001 there were 526 living liver transplants!!!( I’m sure there’s an explanation for that)

** For 2011 the #’s are complete only thru November.

++ Figures are from UNOS (www.unos.org)

To Wit – Roughly speaking there are average 16,000 people in the USA waiting for a liver transplant. The math is very simple –many die waiting for a liver. It is the law of supply and demand and the demand trumps supply. The number of living donors is a small fraction of the deceased donors. Why is that? And why were there 526 living donor transplants in 2001 and only half of that today?

This raises more questions than it answers. Could the waiting list for livers be reduced or eliminated with more live donors? LKDN has saved countless lives by promoting live donations with kidneys. For every live donation it moves someone else up the list to receive a deceased donation. Could the same metric be applied to the liver? Could this be a game changer? What if the paradigm shifted? Can it be changed?

You might say – “so who will give up a liver or kidney for a stranger?” Well, from what I’ve seen there are plenty of people. A couple of entries down on this blog is the story of my friend Paul. He is two week post-op and doing great. His donor was a Good Samaritan.

Katrina Bramstedt wrote a book about Good Samaritans and the meaning of altruism. Katrina is a transplant ethicist and wrote – The Organ Donor Experience. It is a fascinating read and involves several case studies of good Samaritans making an organ donation. Her web page is at http://www.transplantethics.com/ . The stories are inspirational. But more important they are life changing. The book explains the process for live donation and the factors relating to it.

All of this makes good discussion….

07
Feb
12

Paul Found a Liver !!


PAUL FOUND A LIVER – Here is a story about selflessness. I posted a few weeks ago about Paul.  Paul lives in the Chicago area, a retired superintendent of schools.  Paul has PSC, a rare liver disease.  For various reasons, those with PSC generally are not eligible for a cadaver liver transplant.  Usually, those with PSC die within a few years.  The only cure for PSC is a liver transplant, and since he doesn’t qualify for a cadaver liver that means someone must volunteer to be a living transplant.  With the liver, you can donate 60% of your liver and it grows back over a matter of a few short weeks.  It is the only organ in the body that regenerates.  Imagine, a good Samaritan giving up part of their liver for someone else!  Well, it’s happening for Paul.  A high school friend of Paul’s daughter decided that this is something she just had to do.  And it’s happening tomorrow at Northwestern.  They both go under the knife and 60% of the donor liver goes into to Paul.  You can following the progress at their Caring Bridge  http://www.caringbridge.org/visit/paulandkathy   or at daughter Heather Face Book page http://www.facebook.com/FindPaulsLiver