21
May
16

A Story about a Good Samaritan that saves a life of a stranger


Organ transplant folks belong to a very special club. It’s not a club we expected to join, but we are grateful to be a member. Our special club consists of of organ transplant recipients, living organ donors, caretakers and others.  All have a very unique story.

Meet Dennis and Alyssa –  today’s newest members of the kidney chapter. Here is their story:

dennis

Dennis became a kidney recipient on Thursday.  Dennis is my friend and a connection through Vistage, a CEO Peer group.  I’ve been a Vistage member for 15 years and Dennis is Chair of his own group here in Chicago.  Dennis was raised in life to be a “giver” and like some people we all know he almost has the inability to “take”. He is unselfish in his service to others. Dennis is a well-known attorney and best known for his passion for the defense of a group of death row convicts that were wrongly convicted in Illinois.  Those of us in Illinois know it as “The DNA Project”.  Many of these convicts were exonerated through DNA evidence after spending years in prison. Many owe their lives to Dennis. Dennis is very strategic and is an expert at forming high performing teams.

Nancy and I first met with Dennis and his wife over dinner last summer.  His wife, also a respected Chicago attorney were in a daze.  Without a kidney Dennis would die and these two high powered attorneys were frozen in fear – a perfectly normal reaction.

We agreed to walk the journey with Dennis. It was a long and arduous process.  Our first challenge was for Dennis to be accepted into the living kidney program at UIC, but after fixing a heart issue he was good to go.  The next challenge was to find a Good Samaritan donor that could be a kidney match.

We developed a Facebook page and we screened folks who indicated an interest.  We were deluged with inquiries. We talked or communicated with scores of people over the next weeks.  All were normal people that could be you neighbor next door who considered doing something very extraordinary – offering the gift of life to a stranger.

Alyssa, a hairdresser from the Western burbs, was one who contacted us.  At age 23 she never thought about being a living kidney donor but something about Dennis’s situation must have struck a chord.  Being a millennial, the communication was all by text.  She was determined to help Dennis live to see his grandchildren grow up.

I have learned to never underestimate the goodness and charity of people.  We work with transplant folks daily and I am always amazed and the number of Good Samaritans there are in this world – people that want to be part of something bigger than themselves and do something that will have life changing effects for generations – all for a stranger.

One of our missions is to educate people to alternatives to kidney dialysis or suffering with liver disease.  And we are removing these barriers one patient at a time. Assuming a patient is medically able to receive a kidney or liver transplant there should be no barrier to receiving an organ.

I speak to groups often and I always illustrate that there isn’t a kidney or liver shortage.  It is true people die every day waiting but it is all so unnecessary. We all have a spare kidney and most of us can donate a piece of their liver (the liver grows back in a few short weeks). Unfortunately, there isn’t a system or protocol in place to match donors and recipients.

We take a different view and apply simple  business solutions to a complex medical problem. Currently, there is no marketplace for the exchange of kidneys and livers.  No, I’m not talking about money because that is not legal. This is a transaction where the currency is goodwill, love, and selflessness.

The world is full of good Samaritans who want to be part of something bigger than themselves and offer the gift of life to a fellow human being.  If someone dies because they couldn’t find a liver or kidney I almost want to say they didn’t try hard enough.

sbpAs many of you know, our family is very involved in the transplant community.  If someone wishes to educate themselves to the process, you may find it helpful to follow my daughter’s blog.  In fact, my daughter Laurie has decided to become a living kidney donor to a yet unknown stranger.  You can follow her progress at http://sparebodyparts.com

 

 

28
Feb
16

My Five Year Transplantiversary


Five years ago today I received “the call” from Northwestern Hospital.  After 18 months of waiting, they finally had a liver for me. In the previous five months there were three false alarms – all on holidays – livers that they thought would be suitable but they were not. This time it was for real.

 

Me and My Family Arriving at Hospital for Transplant

Our family knew the drill. Lucky for us our condo was 3 blocks from the hospital. I took a shower and grabbed my “go bag” and off we went to the transplant floor 11 East by 4PM. I had no fear because of my faith and my research of the subject matter. I knew exactly the procedure, the risks, and anything else I could learn as a civilian. I was probably the most well informed patient to receive a liver transplant at Northwestern.

 

Me on the Way to the OR on March 1st

The recipient is never told where the liver geographically originates, but being in the aviation business I was tracking two aircraft that likely carried my new liver. At 1AM in the morning it was a go. And 12 hours later I had a brand new/slightly used liver from someone less than half my age. In the circles at the transplant center I have been told it was a “legendary liver”. So while I was a beneficiary, a death of a younger person saved the lives of many people. I pray for this unknown family often.

 

My Old Liver

The next month wasn’t fun, but it wasn’t bad either. My family developed PTSD and Nancy became my full time care taker. This process is not something you can go through alone and I am grateful for my family everyday. After my surgery, I had two immediate goals. The first was to walk home from the hospital after my transplant. The other was to meet with the CEO of Gift of Hope (the organ procurement center) to thank him for all of his help and support. I was successful with the the latter.

 

My recovery was quick. In 30 days I was back in the office. On June 30th Nancy and I left for our month vacation in Canada without any issues. At day 102 the FAA re-issued my Pilot’s medical so I could fly again. Life was normal, completely normal. Only a scar remained.

 

Me and Nancy with Dr. Abecassis and His Wife

While I have immense gratitude for so many who took part in my transplant journey, I am most grateful to my Transplant Team. Dr. Michael Abecassis, Chief of Organ Transplant at Northwestern and now my partner on all fundraising efforts. Dr. Talia Baker, my Chicago neighbor and one of the finest transplant surgeons in America. And Dr. Daniella Ladner, the most focused and committed surgeon I know. All three friends spent 12 hours in the OR so I could have a great outcome. And now my friend Dr. Josh Levitsky, nationally renowned immunologist who follows me monthly while I volunteer for his various studies.

 

Me and My DoctorIt is said all things happen for a reason and I firmly believe this was all part of God’s larger plan. One thing I’ve learned that all transplant patients have in common is a deep commitment to somehow give back to others.  We are all in this very special alumni club; a club we never wanted to join but are eternally grateful to be a member. Universally I have found transplant recipients have an overwhelming urge to somehow give back and give thanks. For me, I offered my time, talent, and resources to Northwestern and it’s been quite a ride.

 

Nancy, Laurie and Ann at Liver Foundation Event

For those that know me, you know I like to build businesses and high trust partnerships; putting together great teams with people smarter than myself (which isn’t difficult) with the autonomy to reach common goals. With the unwavering help and support from the Northwestern Memorial Foundation, we founded the Transplant Advisory Council which consists of an active Board of about 25 folks all touched by the the Northwestern’s Comprehensive Transplant Center. I am honored to Chair this effort and feel privileged to work with the greatest board members in the world. Ann Murray, my foundation partner, has been a true blessing.

 

Like any organization or business, our Board develops and evolves, it involves opportunities, pivots, as we discover and capitalize on the unmet needs. We’ve created high trust relationships with those we’ve brought together including the Northwestern foundation, the physicians, and the patients. Together, we focus our future together on common goals. I believe our mission statement says it all.

 

transplant_village_logo_tagline

 

We developed an online presence with the Transplant Village website which is our portal for patient support and communication. Our patient support program helps those who have financials issues with medication or extra expenses. Not too long ago, we celebrated the 50th anniversary of organ transplant at Northwestern with standing room only for 500 recipients, organ donors, physicians and staff. We developed a “Buddy Program” to provide organ recipients with someone who can “walk with them” during their transplant journey. The Chicago Sharkfest Swim became our primary summer event and people continue to talk about it.

Most important are our efforts to raise money for organ transplant research at Northwestern. My transplant was five years ago, and that is considered ancient history! The landscape for transplant medicine has changed dramatically in that time – all because of ground breaking research. As a research institution, Northwestern is on the leading edge of transplant medicine. Our group will continue to lead efforts and do our part to ensure that research lasts well into the future.

Last year we began our campaign to raise a $10 Mil endowment dedicated exclusively to transplant research at Northwestern. We have already received a $2.0 Mil matching gift and are close to our first intermediate goal. This is the legacy we leave, as transplant recipients, to assure those in the future will have the same benefit as us.

Over the past five years I have counseled many patients prior to their transplants. I have collected many non-medical observations over these years. I am a business person, not a medical professional, so my observations are through a different lens. The lens is one of common sense, general observation, and problems that sometimes include a business solution.

Here are my “top three” observations. Some are not generally shared by medical professionals:

 

Observation #1

There isn’t a Liver or Kidney Shortage

We all read about patients dying waiting for livers or kidneys. That’s true. There is a very long waiting list. It’s called supply and demand of the marketplace and in most regions the demand outstrips the supply.

With kidneys, you could die waiting while on dialysis. The number of people on dialysis that reach 5 years is frighteningly small. Livers are distributed according to MELD scores. The higher your MELD score, the more likely you are to receive a liver. If you have HCC (liver cancer) and you are in compliance on tumor size, you receive exception points which gives you an artificially higher MELD score. Normally, if you have a high MELD, you are very sick. Yes, you have to be very sick, in some cases close to death, in order to get a liver.

But that only applies to a deceased donor organ. Often a patient can have a living donor for either kidney or liver.

In my opinion, if a living donor organ is medically an option, then there should not be a reason why a patient cannot receive a transplant. There is no reason a patient should die. Many people do not know this, but a donor can give up a kidney or a piece of their liver. Everyone has a spare kidney and the donor’s liver grows back like a weed.

If your Transplant Center doesn’t have a living donor transplant program, then find one that does. I’ve talked to many patients who have been told they are going to die without a kidney or liver. On their way out of the hospital, they walk past a dozen people that could be donors.

So, the problem becomes one of allocation – not shortage.

Transplant Centers don’t have list of of potential living donors. It would be nice if your doctor had one in his back pocket, but they don’t. And there isn’t a protocol to find one. You will have to find one yourself.

The key to finding a donor is having a champion between you and the perspective donor. It’s human nature – you can’t ask for yourself, but you can ask for someone else. We live in the age of social media, a preferred way to communicate, so the word can spread quickly that you are in need of an organ.

The process isn’t that difficult but the road is full of surprises. The living donor can be a family member, friend, or an even a stranger. And you would be amazed at the number of Good Samaritans there are in this world. Someone will connect to your story and feel compelled to help. This process confirms one’s faith in the human race and illustrates that giving something that saves a life is the most precious gift of all. We call it the Gift of Life. And both the donor and the recipient go on to lead very normal, and meaningful, life. It is a life altering event for both the donor and recipient. I can tell you scores of stories and we’ve documented a few of them on our YouTube Channel.

I am happy to share this methodology with anyone. LKDN.ORG has developed a system for those who need kidneys and I have worked with many patients needing livers using much of the same methodology I described. It really works.

 

Observation # 2

Be proactive. Your life depends on it. Be responsible. Be accountable.

The most proactive patients have the the best outcomes. They are the most likely to live. It seems people fall in two categories: 40% are those people that let events drive their life. The other 60% of people are proactive and do their best to control the events. If you are in the 40% you need a champion that can stand up for you.

It is your responsibility to learn everything there is to know about your condition. You must educate yourself. Know the differences between the transplant centers. Centers in different regions transplant at different MELDS. You can multi list at different centers. This is a good idea. Second opinions should be mandatory.

If you have a medical issue, do something about it. If you catch issues early it is often fixable. Otherwise it often develops into something big. So often, people put their heads into the sand. This can be a fatal mistake.

 

Observation #3

Find the Best Physicians

I could write a book about this one as it applies to any medical issue. Do your research and go to the best! The best doctors are at your major medical research centers – not normally in the suburbs or smaller towns. Your insurance will pay for the very best and they also pay for the very worst. You are responsible for these very important decisions. Your mistakes can cost you your life. Go to the doctor’s doctor. Not to the patient’s doctor.

It boggles my mind, especially here in Chicago, where we have the best medical facilities in the world. Yet many of the suburbanites stick with the local hospitals for convenience.

Really?

Patients fly from foreign countries to visit facilities such as Cleveland Clinic, Northwestern, and Mayo. But for some reason a 100-mile drive for a suburbanite is too much hassle.

The expert for transplant is not your PCP or gastrologist. There are very few physicians, if any, outside the transplant community that are familiar with the system. Organ transplant can be a cure but not if you wait to enter the system. If you have a liver or kidney issue, find a hepatologist or nephrologist that practices at a transplant center. I know several people who were referred for transplant far too late. Don’t be the one to say, “If I had only known….”

These are the tips I can give you. Again, my tips are not from a medical perspective, but from one of common sense and observation. I openly share these tips with you because they are important and can mean the difference between life and death.

Today I celebrate my five-year transplantiversary. I am grateful!

 

31
Dec
14

A YEAR IN REVIEW AND THANKS


Over the past year my blog has received thousands of hits and I have received many E-Mails from folks contemplating an organ transplant.  As any transplant patient transits the process it’s all about patient and their survival.  Fear, hope, and a myridrid of other emotions affect the patient and their families in additional to their health problems.  The fear of the unknown can be paralyzing. I am grateful if my blog has helped some of you in the process.

My transplant journey began 18 months prior to my transplant in March 1, 2011. It’s been almost 4 years since my transplant.   I was lucky because I was very healthy prior to transplant.  In June of 2011 the FAA gave me my pilot’s license back and that winter I was back on skis.  During the summer of 2011, only 120 days after transplant Nancy and I were spending a month in Canada.

During my journey I had no fear and envisioned a month out of my life once I received “the call”.  My vision was to visit the Gift of Hope facility (the local organ procurement center) on day 30. This vision became my reality; mostly because of my knowledge and faith. On April 1, 2011 I had a delightful lunch with the president of the Gift of Hope after a tour of their facility and meeting the people that made my transplant possible.  Today I have no side effects from my transplant except a big scar that has healed nicely as a badge of honor.

After 4 years of reflections I have two observations to share with you:

SEEK THE BEST MEDICAL.  GO TO THE BEST — Generally for most of us we have decent insurance.  Your insurance will pay for you to go to the very best providers in the world.  It also pays for you to go to the worst. It’s your choice.  If someone offers you a free meal of your choice for a co-pay are you going to choose a Big Mac or a 5-star restaurant?   This means you need to take PERSONAL RESPONSIBILTY. (Something that is lacking in our society but I digress)  You or a family member must research for the best care, you need to learn the system, the process and everything about your condition. NEVER wait for your local doc to make a recommendation for the best care.  You need to take the initiative. You and your family must take control of the events. You are going to control the events or the events are going to control you. Time is not your friend.  This is YOUR responsibility and if you don’t take this seriously you may not survive.

It seems that one of my missions in life is to steer my friends away from our local hospital where I am waiting for my first “good news” story.  The docs do their best at these local hospital but best isn’t good enough.  They tend to hang on to their patients too long. Often they are doing their patients a disservice.  When the patient finally make the switch to a Center of Excellence teaching hospital they usually say to the patient – “that’s where I would go”. (Which begs the question- why the hell didn’t you say that before?!!)  I think one of the dirty secrets out there is what the transplant centers refer to the Friday afternoon dump.  That’s when the local docs decide it’s time to pass on their sickest patients to a transplant center.

Of course, if every patient decided to go to the same “best doc” there would be long lines at Mayo and Cleveland Clinic with empty beds at Podunk Hospital. The good news for you is only 5% of the patients will be competing for the best!  95% never seem to take the initiative.

Are you part of the 5% or the 95%? Align yourself with the major league players!

“GIVING BACK” IS A UNIVERSAL DESIRE OF A POST-TRANSPLANT PATIENT.  I noticed this dynamic early.  A post-transplant patient has become a member of this “special club”.  It’s not a club we ever thought we would join but by virtue of our transplant we become a member.  We are all very grateful and we seek ways to give back to the next person in line.  In my opinion, we are much like a college alumni club where there is an overwhelming gratefulness and a zest for a new life.

This dynamic was the basis for us forming the Transplant Advisory Council at Northwestern and our on-line presence of (Transplant Village).  A group of us have made a huge difference.

Our Transplant Village board have given their time and talents selfishly. We formed a buddy program where incoming patients can team up with one of our board members that are post-transplant.  We have a Patient Assistance Fund – some money set aside to help those patients with special needs. In April we held a sold out event of 500 transplant patients and family members  where we celebrated 50 years of transplant at Northwestern We have initiated and seeded a $5.0 Mil endowment and last summer held the 1st Annual Chicago Sharkfest Swim. And we’ve raised significant funds for transplant research at Northwestern.  We have $1.5 Mil remaining to a $5.0 Mil goal! All the money we have raised goes to further transplant medical research at Northwestern. As a group, we are fulfilling our desire to give back by helping those patients waiting for an organ.

It has been a wonderful year and I wish you the very best for 2015….

Dan Dickinson

Visit our Transplant Village website at http://www.transplantvillage.org !!

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 !!

 


04
Jan
14

November 2013 – The First “All Village” Event


Dan Dickinson introduction to Dr. Michael Abecassis, Chief, Organ Transplant at Northwestern Medicine

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.

26
Oct
13

Transplant Advisory Board at Northwestern Hospital


Here is the letter I sent out to the Northwestern transplant community this week:

Dear Friend of the CTC:

I appreciate your continued interest in the efforts of our Transplant Advisory Council (TAC) for Northwestern Medicine’s Comprehensive Transplant Center (CTC). As promised in my December memo I am updating you on our progress to date. There is much to report.

Our Council now consists of over 23 active council members. 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 Logo

Our Logo

Our council is active and energized and our online presence is established through Transplant Village and our Facebook page. Please Join us – update your information so we can keep you informed of our activities.

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 mission and future of the center. Now it’s time broaden the reach of our community and focus on growing our Village to advance the mission. Earlier this month the CTC has sent out a letter to most all former and current patients inviting them to be part of Transplant Village. We seek those who wish to be part of our mission.

On November 19, 2013 at 4PM we will have our first “All Village” event. You are invited. Three of our yearly meetings will now include the wider community of former and current patients, families, and friends. You are one of the “Villagers” and we want you to be part of this. Dr. Michael Abecassis MD, Chief if the Division of Transplantation will be our speaker at the November 19th event. I have attached an invite at the end of the E-Mail and also on the website. Dr. Abecassis will talk about the center’s ground-breaking transplant related research programs and the present state of the transplant program.

With our November event we will begin the celebration of something very special – next year is the 50th Anniversary of the first successful organ transplant at Northwestern. Since then there have been thousands who have transited our community. (In fact, this month the 1,500th liver transplant was performed) In celebration of this anniversary we are planning a brunch/luncheon event on Sunday, April 6, 2014 at The Westin, in Rosemont. Dr. Abecassis and his team will be making presentations. We are currently in the planning process for the event but want you to mark your calendars and be the first to know.

Our first 18 months of existence the council has had many successes. We have our communications platform with our web page and Facebook. Together with the CTC staff we developed the Case Statement which provides the rationale and justification for raising funds. Our Patient Assistance Fund (PAF) is established with its own policy and the money raised is to help those patients with special circumstances.card_tv_v3

We all belong to this “special club” with a very unique mission and we have the opportunity to accomplish something that has never been accomplished. We are well on the way to make a difference by establishing a sustainable platform for supporting transplant research and the mission for the benefit of future patients. We hope you will continue to be part of our group going forward.

We promise to keep you updated periodically on our activities and progress and appreciate your continued interest.

With regards,

Dan Dickinson
Chair, Transplant Advisory Council
(Part of the Philanthropic Ambassador Network)
Northwestern Medicine

Website: www.transplantvillage.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.

You are invited to the Northwestern Transplant Advisory Council Meeting on Tuesday, November 19th 4:00-5:30PM. The meeting is at Feinberg Pavilion, 251 E. Huron St, Third Floor Conference Center – Room A. The meeting is presented by Michael Abecassis, MD, Chief of the division of Transplantation. Please RSVP to Rachel Sass at 312-926-5426