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).

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