26
Dec
09

Christmas Update + a donor story


Things are going well, and over the Christmas holidays we can all reflect on our faith, our family and friends.  It doesn’t make any difference our personal situations because we are all blessed. Often the things that we take for granted–family, friends, our health and the ability to help others– produce the most joy in our lives. Sometimes we neglect to take care of the people and those intangible things that really should take precedence.

Two weeks back I got to do one of my favorite endeavors — skiing with daughter Laurie.  We flew  to Aspen and skied for 4 days.  The snow was great and the company was better.  We went to the top of Snowmass several times and my limiting factor is my legs.  Every year I am determined to do my leg exercises so I can ski all the way down the mountain with them burning.  We skied until we couldn’t ski anymore.  It was GREAT ! I am the one in orange…

Events occur that bring all of us back to reality rebooting our priorities.  This was one of those weeks when one of our student from St. Norbert was killed in a snowmobile accident.  She was a Junior.  A 20-year old young lady who was vibrant, outgoing, and well loved by the campus community. She was the oldest of 3 siblings with a wonderful family.  She completed finals and decided to snowmobile in Central Wisconsin with her roomates before returning to her family in Northern Illinois for Christmas.  She never made it home.

The night of the wake and before the service, Nancy and I hosted Fr. Jay and Fr. Sal at out home.  After the wake we had dinner together and Jay made an interesting observation.  When the wife dies the husband is a widower; when the husband dies the wife is a widow; but there is no definition or term for someone who loses a child.  It just isn’t supposed to happen.

The St. Norbert College community is a family and there were several trustees and staff at the services.  We really pull together in these situations as do most families.  The parents were with her when she died.  Her organs were donated.  I don’t know the situation, but I assume it included her kidneys, liver, corneas, and maybe even the heart and lungs.  If there is any sense out of this tragedy it will be the gift of life that she has given others.

The last 6 weeks have been very uneventful on the medical front.  Nothing to report because it is status quo.  Over the past  weeks I’ve had a lot of questions so here is an example of the various FAQ’s

FAQ’s FOR DAN

Q:  So how are you feeling?

A: Physically fine.  I never had any symptoms at all so that has not changed.  The HCC was found through a MRI scan.  We found the lesion as it turned to HCC. The lesion, prior to the Y90 treatment, was less than 3 cm (about an inch). I would not have had any symptoms for 2-5 years if I had not had the MRI.  After all the tests I have a very long list of what is NOT wrong with me.  I’ve had brain scans (not much there), Pet scans, stress tests, angiogram, and lots of blood work.  Without any medication my blood work is very good.  I have never had to take medications for cholesterol, blood pressure, etc.  My liver profiles are only slightly elevated.  The test did indicate I have a bad knee which doesn’t bother me and I have been exposed to TB sometime during my life (probably on one of my trips to Africa).  I am about 6 pounds over my target weight and I need to work on my cardio. 

Q: You said the Y90 killed the tumor.  Then why do you still need a transplant?

A: Great question.  I suppose some people would opt out but doing so is Russian roulette.  I am very blessed.  Had the lesion been more than 5 cm– OR– if there were 3 lesions or more, I would not qualify for a transplant.  That is the way the system works.  I am blessed to have found out so early.  I would guess many (if not most)  people miss the window.  For me the window is open, the transplant is the CURE ( the Doc’s words, not mine) so the system allows me to have the gift of life.  If I were to opt out, the probability of  HCC returning is very high. While today it is not detectable, the chances that it is lurking around in the liver is very high.  Prior to the Y90 the HCC was capsulized.  After the Y90  the HCC is gone.  So, we are not going to miss out on this opportunity of a transplant.

Q: How are you handling this emotionally?

A: I am surprising myself with this one.  I have no fear and view this as a speed bump. This doesn’t seem  on my list of worries.  Most likely because of my faith.  Also, the outcome is fairly predictable. I’ve always placed my trust, confidence, and faith in those who I trust and are the experts.  I’ve always searched for the very best and this is no different.  I’ve done my research. Northwestern is a Center of  Excellence and they perform a couple of Liver transplants every week. I observe how Northwestern runs as a business and have studied their systems and procedures. If their system are archaic, they cannot succeed as an institution.  Northwestern is impressive, and as a tier one  research institution they are continually striving to climb to the next level.

 Nancy questions if I have come to terms with all of this.  I think I have, but if not I certainly will after the surgery.  A couple of things I need to resolve:  First, someone must die for me to receive a liver.  I could see someone on the street today and unbeknown to both of us I could end up with his (or her) liver.  This is sobering and I haven’t found the file for it.  Secondly, there are other folks coming down the path behind me.  So, what is the best use of my time and talents to help them on this journey?  I haven’t quite figured that one out yet, but I will.

By the  way, in Illinois, it is very easy to sign up as a donor.  It can be done online at:

https://www.ilsos.gov/organdonorregister/

Q: So when will the transplant take place?

A: It all depends on the Meld score and the supply and demand.  Today, I was eligible for 3 Bonus points which places me at a 25 on the list.  They are presently transplanting between 25-29 depending on blood type.  Assuming the donor liver is healthy the only other determinates are blood type and size.  I must be an X or XL on size and blood type is A+. ( the only A I every received).  There is probably a 50/50 chance of a transplant during  1Q-2010.  If not then, shortly thereafter.

Q: How long will you be recovering?

A: They seem anxious to dig into me because my underlying health is very good.  I don’t think they see guys like me often.  They expect a total stay at the hospital of about 3 days.  After 3 days they place you at a hotel for 10-14 days nearby the hospital.  I live 2 blocks away so I can come home.  Every day for a couple of weeks I will need to visit for blood test, etc.  They say I will be back to my normal work out in 4-6 weeks.  We shall see.

Q: What kind of Drugs do you have to take?

A: For the first month the anti-rejection drugs are heavy, but it seems to taper off fairly quickly after that.  I will always be on something.  However, Northwestern is doing a study where the patient eventually is off ALL medication.  I would like to give that a shot but the insurance company will not allow it.  I talked to one lady who had a transplant 20 years ago who takes one pill daily.

One of my most memorable Christmas Eve;s was in 1968.  Being in the Aviation business my entire life, it had a special importance to me.  I remember how memorized I was.

The crew of Apollo 8 delivers a live, televised Christmas Eve broadcast after becoming the first humans to orbit another space body.

Frank Borman, Jim Lovell and William Anders made their now-celebrated broadcast after entering lunar orbit on Christmas Eve, which might help explain the heavy religious content of the message as they all read from the book of Genisis.

I think often of how this went down in the Soviets,  but it stands in stark contrast to the message sent back to Earth several years earlier by cosmonaut Yuri Gargarin. 

“I don’t see any God up here,” Gagarin reportedly said from  aboard his Vostok I,  True or not, the reactions were ions apart doing nothing to diminish the God-fearing-West–vs.–godless-commies propaganda machine very prevalent in the States at tha time.

The Apollo 8 crew didn’t claim to see God, either, but they were certainly impressed by His handiwork. The loneliness must be awe-inspiring, and it makes you realize just what you have back there on Earth.

And then Borman ended the broadcast  adding –  “And from the crew of Apollo 8, we close with good night, good luck, a Merry Christmas, and God bless all of you – all of you on the good Earth.”


3 Responses to “Christmas Update + a donor story”


  1. 1 Ross & Mary Carnes
    December 26, 2009 at 6:40 pm

    Dan,
    We just received your Christmas card and were surprised at the news of your liver problems. It sounds as though things are going well for you and will keep you and your family in our prayers. It looks like you are in good shape and probably skiing the black diamond slopes at Aspen. I would love to go skiing but Mary thinks I am too old. Now I can show her that an old man like Dan Dickinson with liver cancer can ski so why can’t I? Best of luck with your continuing treatments.

    Ross

  2. 2 Ross & Mary Carnes
    December 26, 2009 at 7:12 pm

    Dear Dan,

    It was great to get your Christmas card and Nancy’s letter where she explained about the cancer. As usual, you both are examples of positivity. By the way, how is Nancy’s back doing these days??

    How wonderful that you and Laurie could go skiing this year! No shortage of snow for sure. Your website and pictures are awesome and I know you treasured every minute together.

    Yes, we sure enjoy spending time with the three grandbaby boys! Keegan is 2 and a half. saying something outrageously funny every minute. We had the old Lionel train circling under the Christmas tree again after all these years. This time though, there were dinosaurs and circus animals in the cars. It was so much fun getting out all the old train stuff again. The twins eyes were following every move big brother made, aching to get their little hands on his toys. Can’t imagine what it will be like next year. I told Ross we’ll have to go to all beanbag chairs and rubber furniture!

    We’ll be keeping you, Nancy and the kids in our prayers in the coming year. I’m confident that you’ll get that transplant soon and that you’ll sail through the whole thing buoyed by the
    prayers and love of everyone around you.

    Do keep in touch and when all this is behind you, let’s plan a get together. I’ll retire this spring, so I’m hoping to have a lot more time to do what I want.

    With love,
    Mary

  3. 3 betty
    February 4, 2010 at 4:59 pm

    Dan,
    I found your blog while googling the net. I also am on the transplant list in St Louis and have hcc. They found mine early with MRI and I had RFA on the one lesion that was only 2cm. I am currently on the tx list with a 25 meld score.

    I also am fairly healthy. I am practically symptom free other than occasional water retention which has only recently shown its ugly head. I am a 55 year old female with HCV from an early 70’s transfusion after surgery. That progressed to cirrhosis and now HCC. I am developing some small high risk lesions but they are confident that i will receive a donor liver before they reach any appreciable size.

    Nice to know others are out there experiencing the same tests and pressures.


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