Tuesday, October 29, 2013

Getting to the 2013 Familial Support Group Meeting

Today's post will get us up to the Familial Amyloidosis Support Group meeting Mom and I attended in Chicago this past weekend. The next post will be the full meeting report, or maybe just the first day. We'll see.

Mom and I attended the previous familial amyloidosis meeting in October of 2011, and there was never any doubt we would try to attend the next one. Two short years later, and here we are. Since the meeting takes place on Saturday and Sunday, we planned on doing what we did the last time, which was to arrive on Thursday and take a train into Chicago on Friday and do touristy stuff. Since Mom is on dialysis now we had to work that into our plans, so we scheduled dialysis in Chicago for Thursday, October 24. We had to make our flight reservations long before the dialysis could be scheduled, so we scheduled a very early flight to give us the most flexibility. That meant waking up at 3:00 AM Thursday morning so we could catch a 6:00 AM flight. <yawn>

So on the flight to Chicago the flight attendants came by with the drink cart, and I got orange juice and Mom got coffee. I drank my orange juice rather quickly so I could go back to sleep, and the next thing I recall was being awakened by something on my right leg. At first all I could feel was wetness. I opened my eyes to see Mom's coffee cup on its side, coffee all over her lap tray, and Mom soaking up what she could with her tiny napkin. The next thing I felt was heat. The heat of hot coffee soaking through my blue jeans. Did I mention it was hot coffee? Did I mention it was too hot for Mom to drink, which is why she fell asleep holding the cup? I would pull one part of my pants away from my skin only to feel heat on another part. Eventually I realized there was nothing I could do other than wait for the heat to die down, which probably seemed to take longer than it actually did. Mom also got coffee on her seat and pants as well. Once my leg was no longer on fire I was able to determine that the top of my pants leg was wet from a little below my pocket to just above my knee. But what was worse than that, and made it hard to get back to sleep, was the smell of coffee. We were able to laugh about it, and I told Mom that spilling coffee on me was better than spilling it on a stranger. Later on I realized how lucky I was not to be wearing short pants instead of blue jeans. (For those of you who are concerned, my leg was not blistered or scarred by the coffee incident.)

The remainder of the flight to Chicago was uneventful, and we landed, picked up our baggage, and called the phone number we had been given to request pickup at the airport. Muriel Finkel answered the phone and I told her where we were. She said her husband Steve would be right there in a white car with a license plate that said "AMYLOID." We waited outside with our slightly damp pants in the 38 degree Chicago air for Steve to arrive, and sure enough, that is their license plate:


The Amyloid Express

Steve took us to the hotel, and we just waited in the lobby for awhile since our rooms weren't ready yet and Mom didn't need to be at the dialysis clinic until 3:30 PM. We took the hotel shuttle to a nearby restaurant for lunch, and then after checking into our rooms we took the shuttle to the dialysis clinic. Mom was told to be there at 3:30 PM for her 4:00 PM session, but she did not actually start dialysis until close to 5:00 PM, which meant she would not be done until about 9:00 PM. Thank goodness I brought a book and my computer, and they have free wifi at the clinic. Mom called me soon after she started and said they had to give her some clonidine because her blood pressure was so high. That seems to be happening more frequently now, which is not good. We took the shuttle back to the hotel after dialysis and had some food delivered to the room for a late dinner.

Friday morning we took a train to Union Station in Chicago and then a cab to Millennium Park. The most interesting thing at Millennium Park is the stainless steel sculpture "Cloud Gate," nicknamed "The Bean" due to its shape.

Cloud Gate

Cloud Gate

If you look closely you can see me and Mom in the reflection in that picture. We are just under the trees, a little to the right of the sun. If you cannot find us there, maybe you can in the next picture. This one was taken from underneath the sculpture, and I know our reflection appears at least five times. Here's a clue: I'm wearing a blue toboggan hat.

Underneath Cloud Gate

Oh, how I would love to sit under that sculpture at night with a laser pointer . . .

After Millennium Park we had the mandatory Chicago-style deep dish pizza for lunch, and then we went on an architectural river cruise. It was very informative and I learned a lot about architecture and Chicago. Two interesting facts that really stuck in my mind are:

1. Michigan Avenue used to be the shore of Lake Michigan. All or most of the land currently east of Michigan Avenue, up to half a mile in some places, is man-made.

2. The Chicago River used to flow into Lake Michigan. Around 1900 a canal was dug so it would flow the other way. Now water flows from Lake Michigan into the Chicago River, which flows into the Des Plaines River, which flows into the Illinois River, which flows into the Mississippi River, which flows into the Gulf of Mexico.

I had planned this trip into Chicago to minimize the walking for Mom, and she did very well, including the stairs we had to take to get to and from the river cruise. After the river cruise we took a cab back to Union Station so we could take the train back to the station near the hotel. We freshened up a bit and then went downstairs for the meet and greet and eat, where the meeting attendees gather the night before the first day of the meeting.

The first couple we met was from Portland, Oregon. He was diagnosed with an ATTR mutation in March and was dealing with polyneuropathy. His mother and grandmother likely had the same mutation based on their symptoms before they died, but they were not diagnosed with amyloidosis. We talked with Cathy T., the fibrinogen amyloidosis patient who received a liver transplant in 2010, and her husband Lon. They are doing well and showed us a picture of 18 of their 19 grandchildren. (I'm going from memory there, so those numbers may be off by one or two.) I met up with SA, the woman I met at the Dallas Support Group meeting in June of 2012, and her father. One person I looked for but did not meet was a fibrinogen amyloidosis patient (female) from Arkansas I recently became aware of as a result of an email Muriel had forwarded to me. I asked Muriel if she was there but Muriel did not know because she had never met her either.

It would be a glaring oversight if I did not mention the very excellent dessert one of Muriel's employees made for the Friday night gathering. Oreo Balls. Oh my goodness. Google it. Make it. Eat it. Trust me.

Next up: Day 1 of the meeting

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