Archive for the 'Gift of Hope' Category

04
Jan
14

Transplant Village Grows !!


In the beginning this blog was all about me and my impending liver transplant.  On March 1st it will be THREE YEARS since my transplant.  For me it is like it never happened.  I am  flying my airplane, I ski and travel.  But life is a journey and its no longer about me…

Now the blog is all about others, the journey about Transplant Advisory Board and Transplant Village which I am honored to Chair. It has been great fun being part of building something from scratch that has never been done before. Now it’s all about the future of transplant medicine and helping the next guy coming down the line.

We held a soft kick off in November with an “open” meeting of the Transplant Advisory Council. All Northwestern transplanted patients (around 4500) were invited and we had no idea how people would respond. We received RSVPs for around 160 and nearly 250 attended! In all, nearly 400 people responded positively to the invitation to both attend the meeting as well as receive information about future activities. We are thrilled at the response!

Below are some videos from the meeting.  Immediately below is my introduction of Dr. Abecassis and an update on our activity.  In the same video is Dr. Abecassis’s update on the activities and future of Transplant Center and a high level over view.

Next are a couple of videos from transplant patients — those that have received the life saving gift and are leading a normal life.

The big news is we have another “All Village” event in March and our April Gala where we are expecting over 500 folks.  Stay tuned to our website at www.transplantvillage.org !!

 


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.

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!

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….