Thursday, November 18, 2010

Diabetes Transplant Summit experience Part 2

This is going to be a work in progress for awhile.  I'm still hoping to get some more pictures.  My camera must not have been set correctly during most of this. (see below).

After the TV interview and during breakfast, I was able to meet Mary Buche, a Minnesota transplant patient, and her husband Joe.  They joined Dr. Hering and me for the rest of our breakfast.  Mary and I connected immediately.  We were both so excited for the Summit and to be able to share and compare our transplant experiences with each other.  She had her transplant in 2007 and is over 3 years insulin free now.  She takes Myfortic and Prograf for immunosuppression and has no side effects other than an occasional mouth sore.

After breakfast, I joined Mary and Joe for a tour of the DC area.  We found out that you are not supposed to take pictures of the Pentagon.  A nice young police officer stopped me and watched as I very ineptly tried to delete my pictures. After all the buttons I pushed to accomplish that, its no wonder my camera was in a strange setting later for the Summit.  We also toured a botanical garden and drove around the city.  I think we got lost a few times, but neither one of us cared or was even very aware.  We were so intent on learning all that we could from and about each other.  Joe was a patient and very competent tour guide.  He seemed to just enjoy us enjoying each other.  We found that we both have the highest regard for the people at the SDI.  We both love the movie Forrest Gump.  We recognized that fountain pool from that movie.  We feel insulted when people tell us disapprovingly how thin we are.  We take our diet and exercise seriously.  We are both health care professionals.  She is a nurse, me a medical technologist.  We agree that having this background helps us to understand the process and to communicate with the transplant staff.

When we returned to the Marriott hotel, we sat outside to worship the sun and have a diet Coke. It was a nice sunny and warm afternoon.  When we went inside, Dave Thoen was just arriving.  He is the other Minnesota patient.  I had met Dave before and was looking forward to seeing him again.  We correspond through email and I really appreciate having him to consult with.  We are in the same transplant protocol and our experiences are very similar.  He has had two transplants and is currently taking just 2 units of Lantus.  We both started back on insulin at about the same time. He was able to tolerate the Cellcept, and is still taking that and Prograf.  Dave and Mary both live in Minneapolis.  I'm hoping that we can get together again while I am up there for a future clinic visit.

I went back to my room and found a message telling me that they are ready to start the individual interviews.  I quickly changed and went to the lobby to find out about this.  The interview was fairly casual.  It was a one on one with questions about my experience.  Many of them covered topics that I was planning on talking about during my turn during the Summit.  One of the questions was about what it was like being in a clinical trial. I had intended to discuss this later, but my nerves made me forget this part.  So I was glad that I had a chance to say how much I enjoyed feeling like an important part of the research team and how well taken care of I was.  I'm really hoping to get a copy of all of these interviews.  I think we were all asked the same questions and it will be interesting to see how we compare.

The other recipients began to arrive for the interviews.  I met Karla Edge first.  She is a patient from the DRI in Miami and had her transplant in 2005.  She takes one unit of Byetta before breakfast and supper, but is otherwise insulin free.  I loved her southern accent.  She has been diabetic since she was 6 and is extremely pleased with hew new life.  Next, I met Gary Kleiman.  He had his transplant at the DRI as well.  He also had two kidney transplants and has been on immunosuppressants for most of his life.  He is the Executive Director of Medical Development at the DRI.  He is very knowledgeable about research toward the cure and I'm already looking forward to some discussions with him about this.  We were all gathered in a hallway and kept having to be shushed while the last interviews were being recorded nearby.  It was just so exciting to all be together.  Except for posing for a few pictures, we were left to ourselves for awhile.  I think it was quite obvious to those around us how important this time was to each of us.  This poster was in the hallway.

We were summoned into one of the banquet rooms where the Meet and Greet was to occur.  Here we all met Ellen Berty.  She had her transplant at the NIH in 2001.  She was insulin free for a few years, but now takes a small dose of insulin every day.  She was the farthest post-transplant of us all.  I enjoyed meeting her husband as well.  He was a psychologist and was interested in the behavior of people who were experiencing low blood sugar.  He says that there seem to be parallels between low blood sugar and lower IQ.  I told him that I always felt like my IQ was probably about the same as my blood sugar at low levels.  If only this was true at the higher levels!  During this time, we were able to gather together and to meet other interesting people who were involved in the Summit and diabetes research.  It all went  so fast.  Mary and I had determined that a glass of wine would be of benefit before we gave our talks at the Summit part.  Unfortunately, I lost mine somewhere in my travels.

We gathered into various groups for pictures.  And then we went into the large banquet room to prepare for the Summit.

The six islet cell recipients on the left.

The Diabetes Research and Wellness Foundation staff with the recipients, family members, and Drs. Hering and Bortz below.

1 comment:

Scott K. Johnson said...

I know you all enjoyed each other's company fiercly. It is such a special bond to be able to spend time with people who are going through such similar things.

If you do happen to coordinate a visit with Dave & Mary when you are here, I would LOVE to join you all for a short time.

Thank you for sharing so much of your visit with all of us. You're really doing a great service by blogging about everything.