August 31, 2010

Hello All-

Mom did a great job of updating the day. I just wanted to add my own........flavor.

It was so wonderful meeting another patient (Terry) who was able to tell me exactly what he is going through after the surgery. He is doing well, and I certainly will keep him in my thoughts. He and Karen were great, they took the time to really inform us about what going through the surgery entails. I feel bad for Mom, Dad, and Emily. While i'm in La-La-Land during the surgery, they have to be out in the waiting room, well, waiting. There's no chance of not waiting, that's the name of the room. But I digress. Terry has had a tough road since his surgery in June, and he was adamant still that I would not regret at all our decision to have this done. They truly were a delight to talk to. Anybody walking by could tell that we were not from around here, them with their Oklahoma accents, and Mom and I with our No'East accents.

Meeting with Dr. Sutherland was certainly the highlight of my day. I was still anxious about certain aspects of the actual surgery, and, after five minutes with him, my confidence level had risen substantially. I appreciated how the very first thing he wanted to do was listen to me. Most doctors want you to listen to them (no offense), and it's refreshing for a doctor to realize the best way to judge how sick I am is to simply ask me. I could tell quickly he hates this disease as much as we do. That realization inspires miles of confidence, and mounds of trust. I figure we should trust him, considering what we are asking him to do.

This afternoon was lazy once we got back to our hotel. I fell asleep for a while, which was, well, awesome, and soon we are going to figure out dinner and maybe something to do tonight. We'll see, i'm still pretty tired. Long couple of days.

Thanks to everybody for your great comments, emails, calls, posts on our Facebooks, and prayers. We truly do appreciate it, and love all of you. Thank you.

Written by Joshua Benson 8/31/10

August 31, 2010

Josh with Dr. Sutherland

Today was a big day.  We finally sat down with Dr. Sutherland, pioneer of the auto islet transplant and Josh's surgeon.

We have good news.  The C-Peptide test which Josh took yesterday had good results.  In fact, the results were much better than the doctor expected given the number of attacks Josh has had.  This test indicates to the doctor what Josh's glucose tolerance is and what type of islet yield they expect to get.  As you know, that is the main thing we are here for, is to get the islet cells out of the pancreas and minimize Josh's need for insulin after the surgery.  Dr. Sutherland said he expects to get an excellent islet yield based on the test.  Fabulous!!

When Dr. Sutherland came into the room he told Josh he wanted to hear his story.  He said everyone with chronic pancreatitis (CP) has a story which he needs to hear.  So Josh chronicled the past 2 years, 5 months of pain, hospitalizations, and tests.  Dr. S also wanted to hear how CP has impacted Josh's life, which has been substantial.

Following that interview, he asked Josh to show him where the pain starts and where it travels, and then he gave us some details about the actual surgery.  He told us it takes about 4 hours to remove the pancreas (pancreatectomy) and about 4 more hours to do everything with the islet cells.  Most patients go to ICU, although because Josh is young he thinks there is a chance he will not.  After ICU there is an intermediate unit (nurse to patient ratio either 1:1 or 2:1) which Josh will go to.  After a few days there Josh will be on the regular transplant floor.  He said to expect 10 - 14 days in the hospital, and after Josh is out of the hospital about a week more in Minneapolis.

I reminded him that we are here and would be ready to take any earlier cancellation!  He said you never know, there could be one.

Then Dr. S noticed Josh's shirt which says "For Sale - One Angry Pancreas".  He started laughing and took out his iPhone to take several pictures of it.  At that point I felt comfortable enough to ask him to pose with Josh, which he was very happy to do (photo at the top of this entry).  When Josh emerged from the appointment, many nurses etc. commented on the shirt and everyone got a good laugh about it.

While we were waiting to see Dr. S, a woman sitting near us commented on Josh's shirt.  We started talking and it turned out her husband has already had this surgery.  We spent a lot of time talking to this lovely couple from Oklahoma.  Before yesterday, we had never met anyone with CP, and now we've met two.  We later met a third, a woman in the cafeteria who commented on Josh's shirt and said she also has CP.  This place is teeming with CP patients!!

When we were talking to Terry and Karen from Oklahoma, Louise, the Transplant Coordinator, came out and saw us talking.  Yesterday she found us talking to Bernadette and John.  She thought this was really funny, and asked Josh, "what are you, a magnet?"

We feel terrible for Bernadette, who we met yesterday.  She started having an attack last night and she was in a lot of pain today.  However, she did get a surgery date, about 2+ weeks after Josh, and we were so pleased for her.  What a HORRIBLE condition this is.

We're settling in to life in Minnesota.  We got tickets to a Twins game next week.  Josh has a Twins cap so he's happy.  The big box of stuff we sent from home arrived today.  So, while we are awfully far away and miss everyone terribly (but especially Gregg and Emily), we are doing what we have to do.  We are starting to see that there will be light at the end of this tunnel.

xxoo
Deb

August 30, 2010

It's Deb now.

Josh did a great job writing about our journey.  I have just a few things to add.

A lot of you are wondering about the surgery date.  It is September 16th.  I'm hoping they'll have a cancellation and we'll get it done earlier, but that's probably unrealistic.  Josh and I are staying here until the surgery.  This way, if he has a flare-up, we'll be here and not in danger of missing the surgery date.

Today we decided to rent a car.  Now we can explore Minnesota for real!

Thanks to everyone for reading, commenting, sending good wishes, and for prayers of all denominations.  Our entire family thanks you and is touched by everyone's concern.

Hugs to all,
Deb

August 30, 2010

Yesterday Mom and I arrived here in beautiful Minneapolis, Minnesota. We checked into our hotel, a very nice ExtendedStay Marriott TownePlace, and settled in. We each have a bedroom, and there is a kitchen and a living room. Our own little apartment in the Midwest.

We made it to the University of Minnesota!

This morning we were up bright and early to make our way for the first time to the University hospital for blood tests. I had to fast from midnight on, but that is not any big deal to me anymore. We scheduled a shuttle from the hotel last night, but there was a SNAFU, and we ended up calling a taxi, which the hotel graciously paid for.

At the airport waiting to fly out

We arrived at the hospital at the Phillips-Wangensteen Building for my blood tests. We proceeded downstairs to the transplant center and checked in. They took my weight, and an initial blood test. I had to drink a "boost", which tasted just like a milkshake. After over twenty CT-Scans, all with disgusting, nauseating, the-person-who-made-this-is-a-sadist "contrast" drinks, the "boost" was a delightful breakfast. An hour after I drank the boost, I went back in to the lab for my second blood test. They were testing my fasting blood sugar first, then my blood sugar both one and two hours after the boost.

Louise showed up while I was waiting for my second blood test. Mom never told me she was British! She is incredibly nice, and she hates pancreatitis as much as me. She is so involved with every patient, it does not take long to realize how much she really cares about each and every person she deals with. She stayed and talked to us for a long time, until I had to go in for my next blood draw. She shared with us her worry that we are going to have trouble getting a lot of islets from my ravaged pancreas. We all agreed that the alternative (waiting until my pancreas "burns out") is a non-option. I look forward to seeing her again in the morning.

While I was standing in the lab, waiting for a phlebotomist, I began talking to a woman standing next to me. It turns out she has idiopathic chronic pancreatitis (ICP) just like me, is here from Tampa with her husband meeting with Dr. Sutherland (my doctor), and is getting the same surgery as me. Small world. We talked while we got our blood drawn, and shared our war stories about diabolical doctors and painful  IVs and just how terrible our disease really is.

Mom and I began to talk to her (her name is Bernadette) and her husband (John) while we both waited for our second blood sugar test. I feel so bad that she has had to deal with ICP for FIVE years, and she has other medical issues. She is almost exactly Mom's age, and I just feel terrible for her. I'm young, relatively healthy and strong, and ICP takes it all out of me. I can't imagine how awful it must be for her. We both were so happy, however, to meet someone face-to-face that knows exactly what we are going through, and share our experiences with each other.

After our third, and last, blood test, we sat down and continued to chat for a while. After about another hour, Louise found our little party in the waiting area. She was so happy that we had met each other, she said it's always great for patients to talk to other patients. She also told us our results from the blood tests. Good news. My blood sugar levels were a ton better than we originally thought, and that bodes well for the islet transplant, and for life post-surgery.

After we left the hospital, we took a cab to a local grocery store called Lund's, and got some groceries and sandwiches to eat for lunch. Now we are hanging out in our hotel room. I'm pretty tired, two and a half years of hospital-dodging is more exhausting than it looks.

Tomorrow morning we are meeting with Dr. Sutherland. He passed by while Louise was talking with us, and we met him for a second. I look forward to discussing the surgery with him in depth tomorrow and maybe setting aside some of the fears I have about going under the knife. But I doubt most of those fears will subside until I wake up in recovery.

Written by Joshua Benson 8/30/10