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.
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.
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.
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.
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.
It 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.
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.
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:
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.
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.
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!