Friday, November 10, 2017

2017 Hereditary Amyloidosis meeting - Friday

Greeting, loyal Fibrinogen Amyloidosis blog followers. The number of email subscribers increased by one last month (first time in quite awhile), so I'd like to extend a special welcome to our newest subscriber. (I can only see the number of subscribers, not the email addresses.) As a reminder to email subscribers, the formatting of emails is sometimes not as good as the formatting of the blog post. So if the email looks awful, check the blog.

As I mentioned in the previous post, at the end of October I traveled to Chicago to attend the hereditary amyloidosis support group meeting that occurs every two years. (Side note: The word "biannual" can mean occurring twice a year (semiannual), or occurring once every two years (biennial). Isn't English a great language?) This was my fourth time to attend this meeting, having attended in 2011 and 2013 with Mom, and by myself in 2015. This year my wife Cathy was able to travel with me, so we decided to travel to Chicago Thursday evening and visit downtown Chicago together on Friday, and then Cathy would do her own thing on Saturday and Sunday while I attended the meeting. I'll blog about the meeting over three posts, with this first post covering the Friday before the meeting including the Meet-and-Greet Friday night.

When we flew in Thursday night the temperature was in the 50s, but we knew from the weather forecast that we wouldn't see 50 degrees again that weekend in Chicago. The weather forecast was indeed accurate. Friday morning we took the train from O'Hare airport to downtown Chicago and walked a few blocks to the Willis Tower (formerly Sears Tower) to go to the observation deck (Skydeck) on the 103rd floor. Here is the obligatory picture of our feet while we were standing on the Ledge, which is a series of four glass boxes that extend just over four feet outside the building, 103 floors up.

After visiting the Skydeck we took a Hop On-Hop Off bus to Millennium Park where we walked around looking at the various art installations. Here is the obligatory picture of our reflection in The Bean (Cloud Gate). I'm wearing a gray hat.

It was definitely cold while we were walking around Millennium Park, but we survived. We then made our way a few blocks north to have lunch before the 2 PM boat tour we had reservations for. We managed to stay on the upper deck for most of the boat tour so we could see the buildings along the Chicago River. (It was an architectural tour, after all.) But once the boat went out on Lake Michigan and started going a little faster we decided to go down below to an enclosed area with windows and have some hot chocolate. It was only then that I realized how cold my hands really were. I haven't been that cold in a very long time.

After the boat tour we walked around a bit, got on the Hop on-Hop off bus again to go through a little more of downtown Chicago, and then we got off close to a subway station to catch the train back to the airport.

After not having the traditional Friday evening Meet-and-Greet in 2015, it was back for the 2017 meeting. We found Cathy T. and her husband Lon, and it was good to catch up with them. Cathy's doing well 7 years after her liver transplant for fibrinogen amyloidosis. Just before we left we spoke with Dr. Benson for awhile. He was not aware of anything new with regard to fibrinogen amyloidosis, unfortunately. One of the topics discussed was liver-only transplants for fibrinogen amyloidosis patients, which he is still in favor of despite the reluctance of the doctors at the NAC in London to embrace it. He was not aware of any other liver-only transplants for AFib besides Cathy's.

That concludes the Friday before the actual start of the meeting. Tomorrow we'll answer two important questions:

1. Will all of this year's participants fit in the Grand Ballroom at the O'Hare Hilton? It seemed almost full in 2015, and this year's attendance is probably 30 to 40% more.

2. Will Cathy (my wife) brave the cold on Saturday and go back to downtown Chicago as planned?

Stay tuned . . .

=====Monthly Blog Status Update=====

As of September 30, 2017:

Total posts: 177 (1 in September)

Total pageviews: 72,700 (~1100 in September)

Email subscribers: 14 (unchanged)

Total number of countries that have viewed the blog: 142

No new countries viewed the blog in September:

=====Monthly Blog Status Update=====

As of October 31, 2017:

Total posts: 177 (0 in October)

Total pageviews: 73,800 (~1000 in October)

Email subscribers: 15 (increased by 1)

Total number of countries that have viewed the blog: 144

Two new countries viewed the blog in October:




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