24
Mar
10

Warning: dates on calendar are closer than they appear. …


  • Dan, Rob, and Laurie on top of mountain

    I got my wings back, and last week was busy for us. Early in the week we were off to Orlando for an Industry function. Later in the week, and over the weekend Nancy and I went to Aspen along with Rob and Laurie. Our hotel was at the bottom of the hill in Snowmass Village. The night we arrived we had a foot of snow and it only got better from there. We all skied until we dropped. I think I stayed somewhat even with the kids. We arrived back in Chicago Sunday night missing the big storm that hit Denver so we lucked out on the weather

Yesterday, was a 3 month anniversary, and I received my 3 bonus points on the MELD. I am now at a MELD-28. Close, but no banana yet. Being at Northwestern (NMH) I am placed in the Chicago pool that draws livers from Illinois and NW Indiana. There are different “pools” around the country and each operates independently when it comes to the supply and demand for organ transplants. The wait list for Chicago seems to have more listees than other areas. If I had been more of an emergency situation, I could have “registered” in other areas of the country. Doing so, however, would mean having to go through the entire bunch of tests at a different facilities which thankfully is not necessary for me. The upshot is I wait a little longer but I am with a team with whom I have a great deal of confidence and a Center of Excellence for transplants. Besides all of that, NMH is only two blocks from our home.

On Monday, I have a checkup so I will ask my coordinator Katie for an update on timing. Last I talked to them it looked like late April/May – but it wouldn’t surprise them if it went to June. We shall see what they say about an update. Also, I have a bought a carton of Girl Scout cookies that I will deliver to the transplant center Friday. A little “nurse bait” should go a long way and it makes me feel a bit better about bugging them on list updates. I have already stuffed myself with enough of the thin mints and it is time to share the stash.

In the meantime, other than a cold I am still at 100% and physically oblivious to any problems. I have not had a cold or flu in 2 ½ years so I suppose it is my turn. Blood work is still perfect, and like the Doc said I am at 96% and an A+. But that is on his scale and he sees a lot of sick people. Mind and Body are good to go.

I mentioned before I need to figure how to match my skills & talents to help others on this same journey. Obviously, any transplant patient and family will have lots on their plate. Their physical wellbeing and financial situation is only part of this. There are folks on organ lists that can’t even afford the parking cost when they visit the Docs in downtown Chicago. Even with insurance, there is always the “donut hole’ where a small percentage of a large expense of a transplant can add up in a hurry. I met one liver transplant recipient who was the caretaker for 3 other people in his family. He had acute liver failure and with no family support drove himself to NMH for his transplant. The point is everyone has their own unique set of circumstances.

SO – On Friday I am meeting with some of the advancement folks at the NMH foundation. They solve a lot of these issues I mention. Simplistically, the advancement team is the money raising department for the hospital through their foundation. These are the folks that advance the mission of the institution and universally are mission driven who work for the greater good of the community on something that is bigger than themselves. Having chaired advancement for 10 years at St. Norbert College I understand how it all works, the challenges and the process. I also know that is where the rubber meets the road and are responsible for the funding to endow the best and the brightest Docs and programs to any teaching and research institution. A flow of patients doesn’t cover the costs of being a really great institution. I am comfortable with advancement people so perhaps we might find some commonalities where my skills and talents might work for them. We shall see, but I am looking forward to the meeting.


1 Response to “Warning: dates on calendar are closer than they appear. …”


  1. 1 Annie
    March 28, 2010 at 10:26 pm

    Dad, I hope this is the very last MELD day we observe with you–we hope that by your June score increase we won’t be noting the score because you will have a healthy new liver. Watch out for the thin mints. I joined a 12-step program because of them 😉 We love you! Annie, Will, Cecilia and Baby


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