Archive for September, 2009

26
Sep
09

Just got on “the list”….


Today I got a call from Katie at Northwestern.  Katie is my transplant coordinator.  Very sharp, smart, articulate,  knowledgeable and dedicated. She even sends me E-mails late in the evening on a Sunday. (I call this fanatic customer service)  Anyway,  I am officially on the transplant list with a MELD score of 22. In three months, on Christmas Eve, I get 3 extra bonus points. (I don’t even have to cash in my frequent flyer miles —  Free upgrade)

This is wierd.  I am in the best shape and health ever yet on a transplant list.  And I see all the other folks at the clinic and they are some very sick folks.  I am reminded by the ironic.  Had I not had the scan I would be feeling this good for 3-5 years and would not have a clue.  God has his plan.

I also got a call from the insurance company.  They have a case worker on this — a private company that monitors these things,  I found it interesting that they require a couple of tests that NW didn’t require.  One being a colonoscopy that I had a couple years ago at Cleveland. Again, I am dealing with one very sharp lady.  She cares and it shows.

Also, their appointment scheduling regimented.  Everyone has the “The next appointment the doctor has is in 3 months”.  Or at best “what is convenient for you?”.  Not so at NW!  I am on THEIR schedule.  And that’s a good thing.  I have been told they have to chase some of their patients down because they don’t show up for their appointment.  That’s foreign to me (as well as being rude) but I can’t believe someone can play Russian roulette with their own life.

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).

24
Sep
09

A Co-Blogger


Hello! I’m Annie, Dan’s oldest daughter.  This past week while in Chicago I attended the Liver Transplant Orientation with my family–and my dad talked to me about being a co-blogger, so here I am.  

Like my dad I’ve never had a blog, but am excited to to help my dad document this journey, keep family and friends updated, and help others who might find themselves hearing the scary words “liver cancer” or “liver transplant.” 

To tell you a little about myself…I am married to Will and have a daughter, Cecilia who is the cutest little kiddo ever.  If you hear my dad refer to “Beanie” that’s who he’s talking about.  He’s the only one that gets away with that nickname though 😉  We live in out of state, but just found out that we are relocating to the Chicago area for Will’s new job.  YEAH!

This past week we traveled to Chicago for the Transplant Orientation meeting, which I found to be very helpful and informative.  I think what I find most remarkable is my dad’s fantastic attitude.  Yes, he’s concerned about his own health, wellness, the pain and recovery of transplant, but he’s also thinking about how to reach out to others when he is through with this challenge.  I’m not surprised, it is so like my dad to look ahead and contemplate how he can help others with his own life experience.  This, I really believe, is what grace does, when given the opportunity.    Grace can take something really ugly and use it like fertilizer to make something beautiful, and that is what my dad is allowing.  We don’t HAVE to allow grace to work like that, but the world is a far richer and better place when people like my dad have the openness to allow grace to work in their lives and in the lives of others.  When the docs asked Dad what he planned to “do” after the transplant, he said he wanted to live his life, work and probably do some public speaking on livers.  Go Dad! 

As soon as I get WordPress figured out I will have posts under my name instead of my dad’s so you’ll be able to tell which of us has written any given entry. 

Thanks, Dad, for inviting me to blog with you!

14
Sep
09

So how did I get to the point where I needed a liver ???


Things always happen for a reason, and this was no different.  I found out about my liver because of an unrelated issue — and ulcer.  In 2001 I was on a commercial airline flight.  I wasn’t feeling good that day and actually thought I had the flu.  The issue was actually and ulcer and I passed out cold on the way to Chicago.  We landed in Chicago and a few minutes later I was at Resurrection Hospital.  Dr. Arun Ohri just happened to be on call that night.  I remember the ER staff saying – “oh, you are very lucky because Dr. Ohri is on call tonight”.  I didn’t know it at the time, but Dr. Ohri’s words and advice alone probably saved my life years later.

My wife and daughter met me there and the tests started. They checked everything, and they determined it was an ulcer.

So what caused the Ulcer?

The most common reason for ulcers is Aspirin.  And that was my problem exactly.  Being over 50, I took an aspirin every night like a good boy.  We are all supposed to do that, you know, for the heart.  Well, since I’m a big guy I took a big aspirin.  And after 3 years I had a few holes in my tummy.  I never knew it and never had any symptoms until I passed out.  And since I was in the hospital they checked everything out. I stopped taking the aspirin so problem solved. BUT —  I had elevated liver profiles.  The doc said to stop drinking.  He scared the hell out of me and I have not touched it since. The liver profiles over the next couple of years went down.  Down to the point where they eventually were only slightly elevated   (where they are now) but the protocol when there is any cirrhosis at all, it calls for a MRI or CT scan twice a year.

The Cirrhosis was caused by alcohol. I never drank a lot, but I did drink like most folks. (OK, maybe a little more than that) Everyone has a different tolerance for alcohol.  Some can drink a high volume and never have an issue.  Others can drink next to nothing and have a problem with cirrhosis.  Cirrhosis can be caused by lots of things.  Hep A and B as an example. There is a small chance — less than 2% or so — of developing cancer from cirrhosis.  But a large percentage of liver cancer is caused by cirrhosis. My style is to “go with the best”.  We could be talking doctors, lawyers, or plumbers.  But if you stick with the best, it is hard to go wrong.  This has served me well and this situation was no different.  One of the world class facilities was right here in Chicago at Northwestern.  So, for the past 8 years I have been getting my CT scan twice yearly.  And it is a good thing I did.

A couple of years ago, they found a very small lesion on the CT.  They said to watch it and a year later it became slightly larger.  When it got to 2.2 cm in December of 2008, they decided to biopsy the lesion.  It came up as dysplasia, which is changing cells.  Not cancer, but not clean either. By now I was on a 3 month scan schedule and in July of 2009 they decided to biopsy it again.  This time is came up consistent with HCC  — The Big C of the liver.

14
Sep
09

A Little bit about me….


God has graced me and I have been very lucky in my life.  I am 59-years old and have lived in the Chicago area all of my life.  I have been married since I was 22 to the greatest lady in the world.  We have been told by many that they want to model their marriage after ours.  She is the most positive person I know.  Never changes and always on the high on life.  They broke the mold with her.

We have two daughters, both married to great guys, who all have their feet planted firmly on this earth. All are smart, articulate, outgoing, caring, responsible, and trustworthy.  One now has her own business in Chicago and the other lives in Ohio with our grand daughter.  I have been in business for myself since I was 25-years old.   I have been blessed with a successful business, with great business partners who are my extended family at the office.  We are close. Very close.  We operate our business with high trust relationships and we are always there for each other.  Always.  We are intensely loyal to our customers, our suppliers, board members, partners, banks and insurance folks.  We consider then an integral part of our team and family.

I have also been blessed with good health.  I am very active and love the sea and snow along with boats and airplanes.  Must be the good genes in my body, but my blood work is great with no medications. It is unusual that I catch colds or ever get sick.  I eat right and  excercise. My only vice is too much coffee.  I am very proactive with my health.  As we get older we see friends pass, and at the service many times they say ” If  only he would have known something could have been done and he’d be with us today”.  Well, I decided that would NEVER be me.  Maybe fly into a mountain or sink at sea — but not die from something preventable! I have come to the conclusion that our bodies are much like a jet aircraft engine. There can be a lot wrong with the engine and it still runs fine — until you take it apart for some reason and the inside is so burned out, one needs a lot of replacement parts for it to fly again.   And that is what this blog is all about.  Replacement parts. I need one so I can keep flying.  In aviation terms it is time for a Hot Section Inspection and I need some new LLP’s.  In this case, new is better than overhauled.

My internist is a local Doc with a stellar reputation amongst his peers. He was head of internal medicine at one of our better hospitals.  He is now a concierge doc, and while he still works long hours he limits the number of patients. Great guy/great doc and he takes very good care of me.  Wanting to be preventative, in 2007  my wife and I went to the Cleveland Clinic for an executive physical so I had yet another  good baseline.  They check EVERYTHING and it is a great experience. I highly recommend it.

13
Sep
09

So Why a Blog on Dan’s liver ???


This is my story of my impending liver transplant. I have never written a blog or chronicled. But I have decided to do this for several reasons.

I am one of the blessed individuals. God has his plan.  My situation is both fixable and curable.  Curable isn’t my word, it is the Docs word.  There is no reason for me to live anything  other than a complete and normal life. The only caveat to that is that I need a replacement liver.

We are also lucky because of the medical facilities nearby.  We are a 3 block walk from Northwestern Medical Facility. NW is a world class  transplant organization and they’ve transplanted over 1,000 livers.  They also transplant hearts, kidneys, and lungs.

So why the blog?

First, when I was told I would be on a transplant list my first reaction was that something good had to come out of it to help other people. There is a huge responsibility here and  we all must  rise to those responsibilities. There are reasons for everything and this is no different.  Some guy (or girl) is coming up behind me and he needs some help too. The web is a great resource to learn, research, and disseminate information to others. Even so, there isn’t  a lot available with first person personal stories.

As a family, we’ve been down this road before.  My wife is probably one of the most physically active people I know.  Her only flaw (yes she had  only one) was her back.  She was almost immobile because of a L5/S1 disk.  We researched for a year and decided to go with a surgeon at the Texas Back Institute and replace the disk with a Charite’ replacement disk made from titanium and plastic.  At the time it wasn’t FDA approved.  The “installation” is through the belly and it is major surgery.  Together we felt the responsibility  to share the story.  We did and we allowed the NBC Today Show to film the entire surgery.  20 hours (yes I said hours) after we walked in to the hospital in Plano, she walked out pain free.  And that included the sit-down camera interview an hour before the surgery began. Over the years we’ve counseled many folks with the same problem. It helps us probably more than it helps them.

Secondly, this is a way for my friends and family to find out the latest information about me personally. it is important people understand what this IS and what it IS NOT.  Without doubt things will get fast and furious at some point in the next few months, so it is a way for everyone to be posted with the latest and greatest. I am sure there are other benefits as well that will manifest during the process.   So, welcome to the journey.  Fasten your seatbelt because here we go….