Archive for March, 2010

31
Mar
10

I took a course in speed waiting. Now I can wait an hour in only ten minutes


Today I had a chat with my nurse coordinator regarding my timing.  Katie was non-committal (as she should be) but said anytime from 2 days to 2 months. There is always a better way of extracting information short of water boarding, so I told her we had an office pool and I needed a date and time for her entry to the contest.  Now she says “one month from today”. I figure she has a better handle on the data than anyone so she definitely has an edge on the office pool.  Whoever  wins the pool gets a meal.  It is a Prime rib by Nancy or  liver and onions.

Nancy requested to see the old liver, so I dutifully made my request. Now, you’d have to know Nancy.  This is the lady who wanted to be wake for her spinal disk replacement surgery through her abdomen so she could watch and observe. Anyway, it is a good possibility her request will be granted. I think I got some traction on the Girl Scout cookie bribe.  A little Quid pro quo goes a long way here and I don’t think they noticed.

The best news is that if I give them my digital camera the team will take pictures during the procedure. I should be able to produce some great 8X10 high resolution glossies for the blog  so stay tuned for some exiting pictures for show and tell. I’ll probably do some speaking about the experience and, well, PowerPoint is now so passé.

SO — at this time that’s all the news that’s fit to print…

29
Mar
10

They’re getting closer. – Cool it. Just you wait!


Today was my 30 day checkup at NMH.  No change and all is well on the home front.  On March 24th, my meld score went up by three points, as it does every 90 days.  Now it is a total of MELD-28.  Not to over bother my nurse coordinator (although she did stuff herself with the Girl Scout cookies) she said I was #3 for NMH and #10 in the city for my blood type so it is looking like “soon” whatever that means.  My best guess the End/ middle of April?   I need to nail that down as best I can.

So, I pose a conundrum to you. A riddle, if you will. Interestingly, one the Docs said today – and he said it several times – “wait for a very very good liver”.  Right off, this would mean someone from life support and not a heart attack victim.  On life support there is more time for analysis and transferability.  This is the part of me that hasn’t come to terms with the issues of talking about someone else’s liver.  ( I did request a Republican liver but was reminded with our political system in Illinois I should just wish for one that’s not corrupt).  Anyway, there must be a good/better/best scale out there so I will look it up.

I had mentioned my friend Janell who, waiting for a transplant,  is running my exact parallel course in St. Louis. (she found out on the same day and we’ve been within days of everything along our journey)  Janell had a call from her transplant center today — telling her to be ready.  They found a liver and she was #2 in line for it.  In other words, if patient #1 doesn’t qualify for some reason they go on to the next person on the list and that was her.  A couple of hours later they called to say #1 qualified, so no banana for Janell (Golden, Ripe, Boneless Bananas, 39 Cents A Pound)  but she is very close.  SO — I must look for a liver that understands about being the best that he can be.

And now I officially lose my wings.  My pilot’s medical certificate has calandered  out on March 31st and I didn’t bother to renew for the short term.  90 days after the transplant I can re-apply and they don’t see any problem.  In the meantime, the Nancy D will be splashed next week.

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.