Archive for February, 2010


Overdue Update

Well, I haven’t been very good at blogging so it’s time to catch up.  Last week began receiving calls from friends to make sure I was still ticking.  No news is good news and we’re status quo –  but here is the latest….

I completed my 90 day check up.  Just as I thought tests were complete more tests come my way.

First, I got to take my first PillCam.  really interesting stuff.  The PillCam is the size of a large vitamin and they put a little grease on it for easy swallowing. The PillCam is activated before swallowing and the flashing begins.  About 50,000 pictures are taken over the an 8 hour period as it snakes its way through your system.  The PillCam checks the small intestine. An EGD is a scope that goes to the bottom of the stomach while the colonoscopy goes the other way.  The in between part (the small intestine) being diagnosed with the PillCam  Anyway, the upshot of the entire procedure is everything is fine and dandy.

Secondly, I had another abdominal scan.  No change after 90 days, no active cancer cells, and the original leason is gone thanks to the Y90 procedure. Everything is “as expected” but it is also nice to get the good news.

Third was an EGD.  Again, all is well.

The only problem over the last 90 days has been some low iron, but supplementals solved that. Interestingly, now when I swim I have difficulty stopping.  I seem to go and go like the energizer bunny.  I think Iron is a great drug.

The docs say I am 97% going into surgery and I still do not have any fear about it at all. I have no symptoms at all and still going 100%. I have not changed my lifestyle.  While I view it as a “bump in the road” I want to get to the bump, get over, and get on with things.

My MELD score remains 25 and I get 3 more bonus points on March 25th.  That places me 10th on the list for my blood type for NMH and 20 for the city.  Doing the math, I always figured it would be a longer wait than Nancy thought, but now we have a new estimate of sometime between perhaps April and maybe as long as June.  The flip side to all of this is I have my wings back for a while.  The Docs say travel where I want for now, so that means I get in another ski for the season for me…

Interestingly, I’ve run into a few other transplant folks.  One friend I have known in our industry for years.  I remember he had a health problem 20 years ago, but I didn’t realize he had a heart transplant, at age 48, and still going strong working like a horse.

I also talked to another guy who had acute liver failure due to a fatty liver.  He was sick, went to NMH and found out a very serious issue.  He went home and 4 days later they called him with a liver.  He was a caregiver to 3 other people, so he drove himself downtown, parked his car, and got a new liver.  I hope he got a discount on his parking.  Since then, he has lost 100 pounds on his own and is doing fine.

And then there is my new friend in Kentucky.  She found my blog and contacted me.  She found out she had HCC on the very same date as me.  She is my age, and has had an identical experience to me.  She is with a liver center in St. Louis and it looks like she will get a liver any day now.  because it is all supply and demand, different centers are transplanting sooner than other centers.  For this reason, those with an acute time issue can register with different centers.

For Christmas, the office made a donation in my name to the foundation at NMH.  Having been involved with Advancment (fund raising) at the college for years, I know the gig well.  Most all buildings at a college or research institute like NMH are built through donations.  And donations fuel the engine so more folks can have access to the very best care.  Having talked to the foundations, there are several endowments available to assist those in need.  Even if insurance pays 95%, the 5% the patient pays can be a significant cost to a family.  The foundation has been estbalished to help bridge this gap.  Many of the transplant canidates are in other states and just the transportation can be significant.  I think my office family may be on to something and avenue where my talents can help.