Posts Tagged ‘MELD

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 !!

25
May
10

Closer but no banana (yet)


Today was my 90 day visit to NMH and all is well. Every 90 days the transplant team updates the MRI’s and CT Scans as their normal course of business. I have moved up the list. Last week the team transplanted someone in my blood group. So, now I am #6 for the city and #2 at NMH. On June 24th I get ONE extra point (not 3 as I thought) on my MELD score taking me to a 26. That jumps me in line to #2 in the city assuming no one jumps the queue

The office pool has also been updated. Dr. Kulich put her money on July 15th and Katie the coordinator moved to June 3rd. I side more with Katie because she is closer to the list. Nancy and I think June 7th which is my 60th birthday and Laurie placed her bet on the 4th of July weekend. We shall see but it looks like a summer where we are floaters and not boaters for the year. Either way we will enjoy the summer and I continue to compartmentalize all of this as a minor inconvenience with a 3 week break I must take with an unknown start date. I do not worry or dwell on it – but I am getting a little impatient. Then I think of those out there that are waiting against the clock….

As for NMH every time I visit I am tremendously impressed with the facility and the team. I’ve often said that you know how a company is run by the vibes from the people that are employed. From the bottom up one can quickly learn the culture of the organization just by observing and talking to the folks sweeping the floor. NMH is a group of incredible folks that are mission driven towards excellence. This is area where many companies strive for but very few succeed. The transplant team are the best of the best and frightening smart and dedicated. And the best part of all of that is we are two blocks away. I can see the clinic from our Condo with my high power super stabilized binocular scope!

Interestingly, I found out they are contemplating a change in how the master MELD list is kept. Remember when I said the list seemed skewed unfairly towards my situation? I believe the medical profession is figuring that in my situation things are treatable. With one Y90 treatment my small lesion was eliminated. I am in great health while there are other folks waiting for livers that are very sick. Any change in the system will not affect my situation but I recognize the wisdom in their future decision making process.

So slowly we approach to the desired result

25
Sep
09

Liver Transplant Orientation


This past Thursday we attended Northwestern Hospital’s orientation to Liver transplants.  Nancy, Annie, Laurie and I walked over to  the hospital early in the morning, vise grips on large cups of coffee.  Sons-in-law Rob and Will sold passports and watched Cecilia, respectively.

We learned a  lot at the meeting. We first met as a group with other transplant candidates. It was shocking because we saw same very sick people. Doing my research, I found out that many transplant patients feel better immediately after surgery then they did before they went in.   One has to be awfully sick in order to come out feeling better. Some of these folks may die before getting a liver.  The demand for livers is greater than the supply.  Northwestern draws from Illinois and NW Indiana. When a liver becomes available, they fly a team of docs to see it.  A very detailed questionnaire is given to the family and tests are done on the donor liver.  Detailed tests are done on the liver to assure it is a healthy liver.  Unlike other organs, the only things that need to match are blood type and size.  Tissue , DNA, etc does not need to be matched as it is for a kidney or lung. (I have asked for a Republican liver and my request was denied.)  In Illinois, it is a law that the family of a potential donor is asked to donate their loved one’s organs.  But the majority say NO.  This is difficult for me to comprehend as I have always been a donor by marking my drivers license.  (This opens up an entire new subject.) It is not unusual for someone to donate their organs and save many lives in the process and also giving sight to a blind person. Why someone would not want to extend their legacy in that manner is beyond me.

We learned the details of how the “MELD” score works.  MELD is an acronym for “Model for End-Stage Liver Disease.”  Typically MELD scores are determined by actual liver function,  something that is not troublesome for me.  But because I have liver cancer and not liver failure my score rises differently. After 90 days I get added bonus points.  Basically, when I go in for my transplant I will be a very healthy guy (healthier than now since I will step up my workouts) The cancer, at transplant,  will likely still be asymptomatic.  My MELD Score is 22 out of a possible 40, the higher numbers being closer to transplant.  Considering my score and blood type, the assumption is that I will be having a transplant in 4 months at the earliest, 12 months at the latest.

During the meeting we met with all of the available docs, the social worker, financial folks, the nurse staff, etc.  These folks are unbelievable.  Being in the business world, I have the opportunity to walk into all kinds of businesses.  One quickly learns the ones that are run right and those that are not.  The NW transplant team is a unbeleivable team.  The chief, who I met, is a no BS type guy.  He started the division several years ago and not the type to tolerate a non team or a “B” player.  This is his baby.  He personally approves all transplanted livers, and has approved every single liver since the inception of the transplant program. Interestingly, he also has his MBA which I think is worth and extra gold star.

Until then the tumor growth will be controlled by one main drug –Y90.  Y90 is put into the tumor via artery–the microscopic glass beads are coated with the treatment drug which has some radioactivity.  It will be injected directly into the tumor. Most likely it will “kill” the tumor by cutting off the blood supply and cooking the tumor.  They do not expect side effects and this is all out-patient.

To be eligible for a liver transplant I had to undergo lots of other tests–the only one with a problem was the bone scan.  It showed that my knee was degenerating.  Well…I’m 59.  I’d be more surprised if it WASN’T.  the odd thing is that the knee hurts now that I’ve seen the films. They also did PET scans on the skull MRI on the chest, EGD, and a ton of blood work.  fortunately, this all came out fine.  I am on zero medication and everything from cholesterol and liver functions are normal.  I call this my CARFAX report.  The ONLY issue is the small lesion on the liver (oil filter).