Archive for January, 2012

21
Jan
12

Update (late) from Dan


It’s difficult to keep my blog current when there is little to report…

 

My 9 month check-up was earlier this month.  The official diagnosis is “boring”.  Other than some vitamins and calcium the only significant medication I am taking is Prograf, which is the anti-rejection medication.  My blood work is completely normal.  Prograf, like most medications come complete with a host of side effects.  Fortunately I have experienced none of these.  The only evidence of my transplant is the scar, and that seems to be quickly disappearing. As I reported previously I don’t “feel” as though anything ever happened to me. Nothing. Nada.

 

This week was my first day on the ski slopes with my new liver. As surgery was approaching I always focused forward on the future.  One of those focal points was getting to the top of the mountain, taking the photo, and sending it to my liver team.  So I succeeded. And just for good measure I posted the picture in the break room at the liver clinic this week. I really have no restrictions so there is nothing I can’t do – except I can’t eat raw fish and I can’t clean the cat box. Sad, huh?

FINALLY - Snow - First Ski with New Liver

 

My year anniversary is on March 1, 2012 – and that is the date I enter the study to reduce the Prograf levels hopefully to zero. One patient on the study has a Prograf dose of 1 mg each week.   It is a fact that some transplant patients – about 20-25% —   don’t need anti-rejection medication.  And there is some evidence that patients can be weaned completely from this medication.  Being in the study carries little risk since if there is a rejection it is easily fixable.  If there is a rejection it occurs very slowly, it is easily identified and can be corrected.  We shall see the results from the study but for me it is very exciting.

 

PAYBACK TIME

 

In the meantime I have been asked to Chair a Philanthropic Council for the Northwestern Medical Foundation and also, as a businessman be on the advisory board for the CTC.  The philanthropic council is brand new and strictly to benefit the Comprehensive Transplant Center (CTC).  To me this is an honor.  It’s payback time.

 

The first order of business is forming the council.  It will be a group of passionate doers with varying talents. We are about half way there and we’ve attracted some very dynamic and passionate folks, mostly donor recipients, who have raised their hands to help.  I am interviewing each one.  Like any organization it is a matter of finding those with the passion and desire to serve — and are smarter than me.  Believe me, those of us who have new organs from NW are very passionate and grateful . We have been given the Gift of Life and now we want to perpetuate the process for the next guy. This will be fun.

 

The fund raising efforts for the CTC is in its infancy but the elements are in place.  First is the product.  The CTC produces great result.  The CTC is a center of excellence and is the “best of the best”.  There is something really special here. It is a secret sauce that consists of culture and competence.  The culture is unique and compelling. The mission is defined within the culture and there is extraordinary commitment with the team beginning with the receptionist.  The teams are scary smart and dedicated.  Those of us that have gone through the process know it.  We feel it. I’ve talk to other centers around the country and their peers all consider NW one of the elite.  It is up to the council to help tell the story.  We have the power to help create a culture of philanthropy.

 

SOME OF THE INITUTIVES AT THE CTC

 

Part of my part time job is learning and being briefed about the various CTC initiatives.  Here are two of them:

 

This week I met with Dr. Josh Levitsky (who happens to be my hepatologists ).  Josh is working on Immunosuppression issues and liver transplant tolerance.  If I can figure it out me will post the abstract.  When Josh gave me his paper he said – “now this is a little complicated for most Docs”.  It goes without saying that when I left his office the average IQ increased.  His research and proposal involves novel research with a potential for major impact on health –improving outcomes for a growing, vulnerable patient population. His paper will be published soon in the Hepatology Journal (commonly known as the Green Book)  He has received some funding but needs more and the delta to take it to the next level is not that expensive.

Also met with Drs. Ladner and Baker. They were MY surgeons.

 

Then there is Dr. Jason Werthheim.  He is growing livers involving stem cells and re-engineering livers.  His stuff is at:  http://www.biology.northwestern.edu/igp/faculty/wertheim/index.html .  I met with Jason this week as well.  I absorbed 2.3% of what he said. Bottom line – they believe in 15 years organs will be “built to order”.  Patient DNA can be injected into a stripped down pig’s liver and a new one grown for a human. For now his micro-surgeons are transplanting man made livers into mice.

 

 And of course, it all takes money. Some of the efforts at the CTC will knock your socks off.  Star wars stuff.  And our little Philanthropy Council is honored to play our part.

 

21
Jan
12

Two Liver Stories


 I don’t think a week passes without being in contact with a “liver friend”.  I am in contact with some through friends and family.  At times the liver clinic will ask that I speak to someone while some come to me through this blog.  It’s a great alumni group – and we all fall in two groups.  Before and after.

Here are two stories…. 

A BEFORE STORY 

My “before” story goes to Paul.  Paul is in the Chicago area and about my age.  He is a fellow pilot, and fly’s the same machine I fly.  He is a retired school superintendent, not retired by choice but because of liver disease.  Paul has a rare liver disease called PSC.  Paul needs a new liver.  

Cadaver livers are distributed through UNOS from donors according to very strict guidelines.  Each potential recipient receives a score.  It is called a MELD score.  The higher the score, the better chance you have to get transplanted.  It’s all supply and demand.  The demand is greater than the supply. Through what I feel is a fluke in the system, my score started out very high and I wasn’t sick.  Not so with PSC.  Paul can be sick with no chance of a liver. 

This leaves Paul with the only probable option of live donor liver transplantation (LDLT) This is a procedure in which a living person donates a portion of his or her liver to another. The liver is the only organ in your body that regenerates.  A donor can donate part of their liver and it grows back in a matter of a few short weeks. When it comes to liver transplants the only “must haves” are size and blood type.  Of course, there are other considerations too, but not near as many as say a kidney transplant.

Paul’s story is compelling. Four people have stepped forward as potential donors, some of them strangers, to donate part of their liver.  So far all of been rejected for technical reasons.  Paul’s daughter has started a Facebook page where his story resides.  It is at http://www.facebook.com/FindPaulsLiver?v=info His daughter’s E-Mail is findpaulaliver@gmail.com.  Pass the word….

 

AN AFTER STORY

This belongs to Kortni.  Kortni is doing fine today after her transplant but she had a hell of a ride to get there.  Kortni had 2 transplants in 4 days.

Kortni is a young and vivacious young woman.  She had liver disease and her sister decided to donate part of her liver.  99% of the time this is successful.  Less than 1% of the time it doesn’t work.  While the surgery went well, the new liver did not start.  Like a computer that stalls with the boot up, Kortni’s new liver stalled out.  In aviation parlay she was out of altitude, airspeed and ideas all at the same time.

In these events, all stops are pulled out.  It’s a real emergency and you are automatically elevated to Status 1 – that means you get the next liver that comes along and jump to # 1 in the line. She got another liver and now is doing well.  Her transplant ooccurred after mine, so I was able to follow her progess through her blog and could relate to her daily progress.

Kortni’s story is compelling.  And you can read it at:  http://kkchoppedliver.wordpress.com/surgery-pictures/