Looking Good!!

We've had many requests to see how Josh is looking. So here he is. 43 pounds lighter!

He continues do well. Josh is working about 35 hours per week. His daytime insulin dose is down to 18 units (started at 30 something).  That is definitely due to the islet cells kicking in.

Thanks to Emily for taking these beautiful photos of Josh.

It's nice to see Josh looking happy and healthy.

We go back to Minnesota on January 3rd for a follow-up appointment.  We are worried about cold and snow, but anxious for the test to see how the islet cells are doing!

Love,
Deb

Latest Update

Josh

Since it appears that Josh is not going to update anytime soon, I thought I would.

The big news is that Josh has a new job, beginning next week (when his 6 weeks of recuperation are over)!!  He will be working in a Subway/convenience store not far from our house (for you locals, the new one on Ocean Avenue, owned by our friends Les and Esther).  Hopefully he will take some classes second semester of this year while working.

He has no pancreatic pain, which to me, is a miracle.  On September 1st Dr. Sutherland wrote the following to me in an email:  "And we will get rid of Josh’s pain." I wanted to believe him, but I was not sure whether that was overly optimistic.  Dr. Sutherland followed through on his promise, and for that we are eternally grateful.  I am thankful every day that we found Dr. Sutherland and we were able to have Josh's surgery in Minnesota with the best team.

Josh is still taking insulin in the morning and with meals.  It is going just fine.  His morning insulin dose has been reduced 3 or 4 times already - indications that the islet cells are kicking in.  Dr. Quevedo, his local endocrinologist, believes he will be off the meal time insulin shortly.

It is difficult to express how wonderful it is to see Josh feeling well, reconnecting with friends, getting out of the house, enjoying food, and in general returning to a "normal" life.  He had a long 2 and a half years of misery.  Those days are now behind him!

Although this blog is about Josh's transplant, there is other news in the Benson Family regarding Josh's two sisters.  Josh's older sister Sarah moved into a new group home in Florida.  We are anxious to see it, but Grandpa assures us that it is beautiful and her bedroom is about 50% larger than her old room.  And Josh's younger sister, Emily, applied to college this week!  We are all so proud of her, and we assume that the college to which she applied will see what a gem she is and accept her immediately.

That's about it for now.

-Deb

A Quick Update on Josh

Josh - October 12, 2010

Josh & Sitka, The Strand Beach

Josh and I had a nice walk to our beach today, following Josh's appointment with Dr. Greenwald.  I just thought you might like to see how well Josh is doing.  I think he is looking great!  Sitka also enjoyed our walk.

We think Josh's islet cells are starting to kick in.  He has blood glucose readings in the 60's every day, and the Minnesota doctor has already reduced his long acting insulin dose by 20%.  (FYI, 60's is very low, most of us would feel sweaty and dizzy at that number, but because Josh is young, he doesn't feel the effects as much.)  Hopefully the islets will continue to wake up and do their thing!!  They told us they would start to work at around 4 weeks, and it will be 4 weeks this Thursday.

Dr. Sutherland wants to see Josh in early January for his 3 month check-up.  Ought to be nice and cold and snowy then!

We are so happy to be back in Connecticut.  Life is good.

xxoo
Deb

Preview of my Book!

This is just a small preview of the first page of my book.....I wanted to get some input from everyone.

It's (tentatively) called "Admitted - A Journey Through Modern American Health Care"

“Dude, you gotta take me to the hospital.” My roommate, Matty, knew from the tone of my voice that I was not joking, and he grabbed the keys to my car off the coffee table. At first I thought it was appendicitis, or at least WebMD told me it was. The pain in my abdomen, unexplained, had been ongoing for about four hours. I had awoken to it. I had never felt anything like it before. I called my Mom, since I was away at college, and informed her that my roommate and I were on our way to the hospital. Little did we all know that this one phone call would be the beginning of the toughest, most painful, expensive, and physically and psychologically taxing journey of my young life. What I would learn in the next few years takes most people a lifetime.

Pancreatitis, by definition, is the inflammation of the pancreas. When the Doctors fist came to me with the diagnosis, I had no clue what they were talking about. What did this mean? What was the treatment for it? Was it life threatening? Most of all, I thought, what the fuck is a pancreas?

My parents arrived at the local hospital in Newport, Rhode Island around the same time I heard the word pancreatitis for the first time. We were now on this journey together. My father, who is an attorney at a major pharmaceutical company and has degrees in biology and genetics, knew a little more about the physiology of the pancreas, but he still had a lot to learn. My mother, an attorney like my father, would devote all of her free time in the coming years to learning everything she possibly could about the horrible illness that ailed me.

That first visit to the hospital lasted just over a month. Medically, it was probably the most sick I would be out of all of the hospitalizations that would follow. My pancreas would dominate my life and the life of everyone around me for the immediate future, as my pancreatitis would eventually develop into chronic pancreatitis (CP).

My family and I were devastated to learn that I had developed such a horrible disease. The icing on the proverbial cake is that my CP was found by doctors to be “idiopathic”. Idiopathic is a fancy way of saying they have no idea what causes it. I was tested not only at Newport Hospital and Rhode Island Hospital, but also visited Massachusetts General Hospital in Boston, Massachusetts and the Mayo Clinic in Rochester, Minnesota. At both hospitals I was subject to rigorous testing by world-renowned doctors. Genetic tests showed that my CP was something I had developed on my own, and did not inherit from either side of my family. Endoscopic ultrasounds (EUS) and endoscopic retrograde cholangiopancreatographies (ERCPs) also were inconclusive. Both procedures involve a camera being forced down my throat and esophagus, while I was heavily sedated, to examine my pancreatic ducts and pancreatic functions. Every time a test came up inconclusive, it became that much more frustrating. If only we could find a cause for my illness, there might be a chance we could somehow find a solution. Slowly, the hope that we would find a cause faded, and we began the long search for a solution regardless of knowing what caused it.

It was actually at the Mayo Clinic, after an EUS, that my father and I were sat down and told that my recurrent pancreatitis, as we were calling it at that point, had developed into CP. Calcifications in my pancreas, which were visible on CT scans and during the EUS they had just performed, prompted the diagnosis. It was difficult not only because I heard that I now had a chronic disease, but I was halfway across the country away from most of my family and support system.

Please let me know what you think! I'm working hard daily on it. Hopefully it will be as good as I expect it to be!

October 6, 2010

Hello everybody,

Sorry I haven't posted in awhile. After we got home, I got distracted with other things and haven't gotten around to updating the blog.

Well I've been home now for almost a week and i'm getting better daily. The incisional pain is still there, and all the nerves and muscles they cut are healing so they hurt, but there is no pancreatic, chronic pain, as far as I can tell. I'm getting used to having diabetes as well. I check my blood sugar frequently, and take shots of insulin every morning and whenever I eat. I talked to the diabetes doctor from Minnesota the other day, Dr. Said. I read him my numbers, and he said they sounded great and told me not to change anything with my insulin. So at least my diabetes is stable. One less thing to worry about.

My recuperation is going well. I try to get up and out as much as possible. The weather here in CT has been pretty horrid, but I'm still getting my walks in down to the beach. I bring the dog sometimes when the old lady's not too tired. I started to outline and even write a few pages of my book also. A lot of my friends and family will be in it, as well as my doctors, because it is impossible to tell the story of what happened to me without talking about all of you. I would not be here if it wasn't for all of you.

Anyways, I have an appointment next week to see Alan Greenwald, my wonderful gastroenterologist, to talk about my surgery and the future. Alan and his family have truly been great throughout my illness, not only as my doctor, but as great friends.. Anytime I have needed anything, he has helped me out without hesitation. He is really a great doctor and friend. Needless to say, I HIGHLY recommend him as a doctor.

Then on the 18th I have my first appointment at L&M at the Joslyn Institute to meet my diabetes doctor, which I'm actually pretty excited about, apart from all the paperwork I of course have to fill out. Should be interesting.

I took a trip with my good friend Ryan yesterday up to my old stomping ground in Bristol, Rhode Island to see my old roommate Matty, his girlfriend Dajana, and meet their dogs. It was good to see old friends and get out of the house. It did, however, make me tired all day today. I guess my body is still really in recovery. Ryan and I saw an accident happen right in front of us on the way home. It was crazy. Also, I had the hiccups the entire way home and probably most of the night while I was sleeping. It was miserable. Thankfully Ryan drove both ways and I was able to rest.

That's about all from here for now. It's been great to talk to everyone, and see friends and family since I've been home. Don' t be shy. Drop by the house, I know we'd love to see all of you.

Have a great night.

Josh

September 29, 2010

Hey everybody!

Mom hocked me enough that I have not written on the blog since surgery, so here I am.

Surgery was, as all of you can tell, a life changing experience. I certainly did not expect the amount of pain that I was in right after I woke up, but the great team working on me eventually got that under control. It was a rough couple days.

Since surgery, I have grown stronger daily. Every morning I get out of bed with more strength, determination, and less pain. Don't get me wrong, the incision hurts, and will hurt for a while, but I can already tell the pancreatic pain is gone. It makes Mom literally jump for joy.

Today we had our last appointments at the clinic. We saw Dr. Sutherland, and he was again impressed with how strong I am only thirteen days out of surgery. I even got my staples out! Once those came out, I felt infinitely better. Now there are just some steri strips, which fall off easily, covering the incision. Without those ugly staples, we can really tell it is quite a gorgeous incision, and will not be nearly as bad in the long run as I'd feared.

Today I got a new laptop (A MacBookPro of course) courtesy of my Uncle Adam. Thank you so much Unc. It will help get me back to school and on track to start my life, as well as start the book my father wants me to write.

Tomorrow, Mom, Grandpa and I fly back to Connecticut. It will be good to sleep in my own bed, hug my dog, and see my Dad and sister, as well as the rest of my friends and family. I truly do miss all of you.

I want to thank everyone for their continuing support during this ordeal. I know it was especially hard on my Mom, and everyone truly helped her with their prayers, calls, texts, posts, and thoughts. We truly are lucky to have you all as friends and family.

Hopefully, I'll see you all soon.

Love,

Josh

September 27, 2010

Josh at Starbucks

We had a great day today.  In the morning Josh and I went to Starbucks.  The weather has turned beautiful in Minneapolis, so we were able to sit outside and people watch.  It was delightful.

In the afternoon, Grandpa arrived!

Josh and Grandpa 

We were so happy to see him, and man, was he happy to see Josh doing so well.

My dad and I spent the afternoon getting my boxes packed for shipping back to Connecticut.  There is a FedEx office directly across the street.  We walked over there to figure out how to get the boxes there, and the lady offered to lend us their hand truck!  She didn't know us, and she just let us take it.  Yes, they are really nice here in the midwest (OK Anne, you were right).

We went back to the hotel and packed up the two boxes, used the hand truck to get them across the street, and shipped them.  It made me realize that we really are coming home.  Hooray!!  I am very grateful for my dad's assistance.  I could not have done this alone.

Tonight the three of us went out for dinner at a really nice place called "Loring Pasta Bar".  It is in the area of town called "Dinkytown",  which is a 4 block area on the north side of the University of Minnesota campus.  Josh was able to eat a small portion which we considered a big success.  (It takes a while to get one's appetite back after this surgery.)  After a while he was hurting from sitting upright, so we finished up and went back to the hotel.  I think that's pretty amazing, though, for 11 days after this major surgery.

Tomorrow is a free day, Wednesday we have appointments over at the hospital, and if all goes as expected, Thursday we come home.  My dad is on the same flight with us which will be wonderful.  I hope they remove Josh's staples on Wednesday (I expect they will) because I think they are the major problem he has right now.  There sure are a lot of them!

xxoo

Deb

September 26, 2010

Josh got sprung from the hospital yesterday, in the late afternoon.  Dr. Sutherland said he was not the fastest to get out after auto islet, but he was pretty close to the fastest.  One young woman got out on day 7 - she holds the record.

Warning:  I'm going to post a picture at the bottom of Josh's incision.  Hopefully Dr. Sutherland will take the staples out on Wednesday before we come home.

Now I'll begin the saga of things gone crazy, which explains why I did not write on the blog last night.

We came back to the hotel where I had carefully requested to be moved to adjoining rooms, went to the rooms, and they were not adjoining.  Josh only wanted to lie down and sleep, but I insisted they move us, which they did.

Then I had to start moving all my accumulated stuff from my other room to the new room, which was quite a job.

We then looked in our large bag of prescriptions for the test strips and lancets for the glucose meter, and found that we had the wrong brand and they would not work.  I called the hospital pharmacy and they wanted me to come over to exchange them.  I didn't feel comfortable leaving Josh at that point, so I asked them to find out if security would bring them over to the Radisson.  (It is really close, just 2 blocks.)  That did work out and security delivered the new test strips and lancets.  They are SO nice in the midwest!!

Then Josh started the hiccups.  They were bad.  He had them his last night in the hospital and they eventually gave him a prescription medicine which made them stop.  He was in terrible pain every time he hiccuped.  I really didn't know what to do, but it became clear to me that I needed to do something.  Dr. Stone had given us his cell phone number and I texted him.  He texted me right back and called in the prescription which had worked in the hospital.  Now I had to go out and walk to the hospital to get it.      Oh well.  I did, but the prescription did not work this time.  I got Dr. Stone again, and he called Dr. Sutherland, and they decided if they didn't stop, I needed to take Josh to the ER.  Just then, while we were talking, the hiccups stopped.

I thought we were all set.  Josh ate a little bit, and all seemed ok.  Then the hiccups started again, with a vengeance!   Back on the phone with Dr. Stone, and we decided to go to the ER.  As Josh and I were getting ready to go, the hiccups stopped.  So we didn't go.  Dr. Stone said if we didn't go to the ER, we were to see him the next day (today, Sunday) and he would run some tests to make sure everything was OK.

When the hiccups stopped the second time Josh said he was going to sleep, which seemed like a good plan.  At about 2:30AM, I heard him hiccuping again.  I went in his room and he was fast asleep.  He hiccuped for a few hours, and slept through most of it.  I think I was awake for most of it.  They eventually stopped.

This morning we went to the hospital to have x-rays of his chest and abdomen, and blood work.  Everything was normal.  However, the nurse decided to take his vitals and found his blood pressure low, and heart rate high.  Dehydration!  They gave him two bags of IV fluids and he is now feeling really good.

When we left the hospital a little while ago, it was Josh's idea to walk back.  (The hotel would send a shuttle if we asked.)  I was pretty impressed that Josh, 10 days after this major surgery, easily walked the 2 blocks back to the hotel with me.  That's how he's going to get better!!!

There's a lot to do with the testing of the glucose, administering insulin, counting carbs, but we are getting it.  We will see the Diabetes Educator again on Wednesday so we will find out anything we are doing wrong or whatever.  Josh has been very motivated to do it correctly.  The doctors want to give the islets the best possible chance of settling in and working, so it is important to keep the blood sugar under good control.  They don't want to "stress" the islets.

So hopefully things will be smooth from here on out.  Josh is looking good and happy to be on the road to recovery.  The whole insulin thing is not bothering him.

Here's the incision, with the staples and some normal bruising at the bottom.

xxoo
Deb

Day 8 Post Op - September 24, 2010

Josh is doing really well.  He could have gotten out of the hospital today, but he opted for one additional night.  He will come "home" (to the Radisson) tomorrow.  I am looking forward to it.

His has been a fast, uneventful recovery.  He deserved that, didn't he?

Today a lot of time was spent doing diabetes education with Josh.  There is a lot to remember, but I know he will do fine.   Hopefully his need for insulin will not be great or go on for a long time.  Time will tell.  Here he is with his diabetes educator.

Last night Janie and I ate at a place called the "Uptown Cafeteria".  It was kooky and fun.  We each had a martini which came with a little toy.

Late today Janie and I took the light rail out to the Mall of America.  Janie couldn't leave Minneapolis without experiencing that place.  It was a nice diversion.

If all goes well, we will be home in Connecticut next Thursday.  Janie leaves tomorrow; my dad comes Monday and will fly home with us on Thursday and give me a hand.

BTW, I know it's been nice back East, and I'm jealous.  It was really cold today and there was a wind warning.  Yesterday there was a flood warning.  And we think we have crazy weather!

xxoo

Deb

Post Op Day 7 - September 23, 2010

Josh and Aunt Janie

Josh finally let me take a picture (OK, so I've taken others but he wouldn't let me post them).  Isn't he looking good?

Today they took out Josh's drain - this is a good thing because it was really annoying him and causing him pain.  They disconnected him from all IV's and other things, and switched everything to oral (i.e. medications).  He is on a regular diet.  He gave himself his first shot of insulin today.

Dr. Sutherland came in and was really pleased with Josh's progress.  Josh will be getting out of the hospital tomorrow or over the weekend, and Wednesday we will have an appointment at the Transplant Clinic.  Then if all is well (and it WILL be) we will be on our way home!  I have to deal with Delta tonight, so I'm not sure when we will be flying, but we are on the right road.

Dr. Sutherland feels that Josh's islet cells are already starting to work because he has not needed a lot of insulin.  Great news.

I had my massage today and it was wonderful.  Tonight Janie and I are going out to a new Minneapolis restaurant.  It's called "Uptown Cafeteria".  The hotel shuttle will take us there and come back to get us.

So it's all good from here.  Hope to have good news tomorrow or Saturday about an end to the hospital stays!!!

xxoo
Deb

Post Op Day 6 - September 22, 2010

Janie arrived today and I am very happy to have company.  Also, she's another person for Josh to be annoyed with, so it's not just me.

Josh has made good progress in the last two days.  Today they took him off the insulin drip and gave him his first injection of Lantus (long acting insulin).  He also started a regular diet.  He didn't eat very much, but at least it's a start.  He is also off the TPN (total parenteral nutrition).  He's getting in and out of bed easily, and taking walks in the hall.  He's still attached to a lot of stuff, so it's a bit of a rigmarole to get going, but he does.  He started oral pain meds today, but is still getting some via IV also.  His pain level is much better, and the pain seems to be mostly incisional and from where the drain is.

He has not been sleeping well.  He got a new roommate last night who had some sort of emergency early in the evening.  There were doctors and nurses in the room all night, so of course Josh didn't sleep at all (even with his ear plugs).  When the doctors did rounds this morning, I told them that Josh was not going to heal if he didn't get a night's sleep.  They were sympathetic and worked on it, and Josh did get moved to a private room today.  The problem is, if someone is admitted who has something communicable (usually MRSA or VRE), they have to be in a private room and Josh will get bumped.  But we figured that whatever time he got to sleep was worth it.  I hope they don't move him tonight; I think even one night's sleep is going to help him tremendously.  Another thing is when he was on the insulin drip, they had to test his blood sugar every hour, which included through the night.  Now that he is on the Lantus, they will only test him every 3 or 4 hours.  So that will help too.

Tomorrow I am going for a massage and I am so excited!  Janie will be at the hospital with Josh, so I felt OK going to do this.  My pinched nerve starting acting up the day of surgery (what a surprise) and is still bothering me, so I hope the massage will help.

It was rainy again today, gray and gloomy.  I think you all in the east are enjoying much better weather.

That's about it from here for now.

xxoo
Deb

Day 4 Post Op - September 20, 2010

Today was another good day.  This morning the doctors told Josh he was doing "better than expected" and he is "ahead of schedule".  Hooray!

Josh is able to get in and out of bed himself.  Today PT took him for a stroll around the hall and he did just fine.   He sat for a little while at a little sitting area down the hall.  He prefers to stand as sitting sometimes hurts his incision, but he did sit for quite a few minutes.

I think they will start him on a liquid diet either tomorrow or the next day.  Soon they will take him off the insulin drip and start him on an injection of Lantus (long acting insulin) and teach him to monitor his blood sugar and give himself any corrective doses needed.

I am eternally grateful that he has not suffered with any complications.  It must be because of all the prayers and good thoughts you all have sent his way.

I heard it was beautiful in Connecticut today.  It was NOT beautiful here.  It was pouring and cold.  Then suddenly this afternoon it stopped pouring, the sun came out, and it was warm. Very strange weather.  It changes quicker here than New England, despite sayings to the contrary (i.e. if you don't like the weather in New England, just wait a minute.)  Every Minnesotan I have met tells me December and January are brutal here - 40 below zero is not unusual.  I'm glad Josh and I will be long gone by then.

Miss you all!

xxoo
Deb

Day 3 Post Op - September 19, 2010

Josh made a lot of progress in 24 hours.  Today he:

• had the NG tube removed
• had the catheter removed
• got off oxygen
• got off Heparin
• walked across his room and back
• moved out of the intermediate care unit (step-down unit) to a regular transplant unit

Not bad for 24 hours??

Do you believe in karma?  Do you think some things are more than just a coincidence?  I do.  I moved to the hotel across from the hospital today, and was assigned room 615.  Josh moved to his new hospital room today - the number?  6-515.  Does that strike you as more than a little strange?  I believe it's a sign of good luck and good karma.

Josh had on his glasses today and was watching various sporting events on television.  Yes, he is definitely getting better.

Gregg and Emily returned to Connecticut today.  We will miss them, but hopefully before we know it we will be back also.

Thanks for all your calls, emails, texts, comments, etc.  We appreciate everyone's support.

xxoo

Deb

Day 2 Post Op - September 18, 2010

Josh is definitely doing better today.  He still has a lot of pain but it is being controlled better.  They are giving him an unbelievable amount of pain medication.  It would kill any of us, but he has built up so much tolerance that he needs that kind of dose.

PT came in and got him to sit on the edge of the bed.  Tomorrow I think they will try to get him up.

Gregg and Emily got to meet Dr. Sutherland today.  He sauntered in around noon time.  I was thrilled they got the chance to meet him.  They immediately saw how unassuming and kind he is.  He said everything is going great with Josh, and each day he will feel better and better.  He reiterated how happy and thrilled he was with the islet yield (we agree!), and said he thinks Josh will eventually be either insulin independent or needing only a very small dose.  Very encouraging.

Josh has been very quiet.  His throat hurts from being intubated and of course he is in pain.  However, all of a sudden this afternoon he started talking, and we knew that meant he was feeling better.  He asked me to read him all my blog entries from the day of surgery, which I did.  He also asked me to read all the comments on the blog.  He was very interested in all the details.  Eventually he got around to criticizing me, and then I knew he was getting better!  It's always the mom who takes the abuse, right??  It's OK, I don't mind (too much), so long as he's getting better.

Hope everyone had an easy fast today.  We thought of all of you.

Until tomorrow -

xxoo
Deb

A Report From Em and Gregg

                                                              Chasing the rain away!

From earlier posts you know that we arrived Thursday. We feel that Josh's transplant is like chasing the rain away, so while we were still in Hartford we had the opportunity to get rid of our umbrella.

It has been really great to be here with Mom (Deb) and Josh, even though we hate seeing Josh in so much pain. The difference now is that we know this pain will get better, unlike the chronic pain he was experiencing before.

Minneapolis is a nice city. Everyone is very friendly and we spend most of our time in the middle of the University of Minnesota campus. Mom and Josh got us each a UM gift from one of the MANY University bookstores called "Goldy's Locker Room". It really helps us fit in here since everyone wears UM clothing.

The hospital is extremely nice and the staff are wonderful. We could not imagine Josh having this done anywhere else. The only thing we want now is for Josh's pain to stop and for him to come home soon to a life free of chronic pain.

We want to thank everyone for your sincere concern and well wishes. It means more to us than you could ever know.

With love,
Em and Gregg

Day 1 Post Surgery 9/17/10

Josh is in a lot of pain. To begin with, this is a painful surgery. Add to that the fact that Josh has built up a tolerance to the pain medications, and you know that day 1 has been rough. Josh's team is working hard to get the dosages right and get Josh to a more comfortable state. He is fast asleep right now so I think we are seeing some success on that front. I hope so.

The good news is that everything post surgery is going very well and smoothly. The doctors are pleased with his progress. He did need a pint of blood today, but that was not surprising as this is a bloody surgery. (He's getting a second pint later tonight.)

Tonight they will start giving him some nutrition. He will get that through his central line. This should help him start to feel better and stronger.

They test his blood sugar every hour. He is on an insulin drip. His readings have been excellent and very stable. Islet cells - wake up and start doing your thing!! (They don't kick in for about a month. I can encourage them, can't I?)

The major problem here is pain, and hopefully that will be getting resolved. Thank goodness everything else is good.

We wish an easy fast to everyone. This family is looking forward to a much happier and healthier new year.

xxoo
Deb

We know that Josh will continue to get better. It just is going to take some time.

End of Day of Surgery

Thanks to everyone for all the encouraging words, texts, emails, phone calls, etc.

Surgery was 10 hours.  Josh was in the Recovery Room for about 3 1/2 hours.  The step-down unit was filled, so he went to ICU.  When I got there, he was in horrible pain (this from a guy who has seen a lot of pain in the last 2 1/2 years).  However, the doctors and nurses were hard at work figuring out what dosages and what drugs he needed.  They started to get his pain under control late in the evening.  They all emphasized to me that this is an extremely painful surgery.

Gregg came to see Josh in his room, and a little later Emily.  Josh has a lot of tubes, oxygen, catheter, two IV's, pain pump, etc. etc.  It's quite a lot to take in.  However, he looks really good!  His color is good and he really does not look bad (if you close your eyes to all the stuff he's connected to).

By around 11:30PM, a bed had opened up in the step-down unit, so they moved Josh.  I left the hospital at around midnight - he was in his new room, was relatively comfortable, and was in good hands.

When he moved to his new room, the nurses were surprised he didn't have a breathing tube.  They said most auto-islet patients do.

Despite the pain, Josh was with it enough to understand when I told him about the great islet yield.  He was very pleased, as he should be.

We will be back to see him in the morning, and I'll let you know how he's doing.  Maybe I'll even post a photo!

We are so happy to have this behind us.  God willing, the islets will implant quickly, Josh will get through this pain, and he will begin to regain his life.

Again, we appreciate each and every one of you who cares enough about Josh to read this blog and be interested in how he is doing.  You give us strength!

xxoo
Deb

Islet Yield

Great news! Islet yield was over 500,000 which is fantastic. For those who understand these numbers, the yield was 4600 per kilogram. Josh should be able to be either insulin independent or nearly so, which was our goal.

He's still in the OR, but should be going to recovery soon. He is not going to ICU.

Gregg and Em are in Minneapolis and should be here soon. Can't wait to see them.

I'll update more later. It's been a long day.....

xxoo
Deb

Surgery - September 16, 2010

I've just gotten my first update. Josh is doing great. His pancreas is out! It has been sent to the lab for retrieval of the islet cells. The doctors are working on rerouting all the various things for Josh (plumbing I call it).

The doctor says the pancreas was very small from all the scarring, it was hard and full of calcifications. It was as expected.

They also removed Josh's appendix and spleen.

I'll update later when I know more. Thank you for all your thoughts and prayers. It means the world to us.

xxoo
Deb

September 15, 2010

Well it's the night before surgery, and I won't have a chance to write in the morning, so I thought I would say a little something now.

I want to thank everyone for all of their continued support. It really helps to have friends and family behind us and praying for me. It truly gives me strength.

I want to especially thank my family- Mom, Dad, Em, Sarah, Grandpa, Aunt Janie, Uncle Ad, Jon, Eric, and Sitka. I would not be here today if it wasn't for your love, support, and, of course, senses of humor. I love all of you tremendously.

I know my Grandma Susie is looking down on me and sending me her love. I miss her every day. Love you Grandma.

Lastly I want to thank my Mom for being here with me this entire time and being dedicated to my recovery. She really set all this up, talked to Doctors and coordinators and the insurance company, and got us plane tickets and hotel reservations. All I had to do was get on the plane in New York. I love you Mom. Thank you.

Surgery is scheduled to start at 7:40 A.M. CT, 8:40 A.M. EST. If you want to know the status, call my Mom on her cell 8608840399, or my cell 8603034591. She will have them both.

I hope to talk to all of you soon, and see you when I get back East.

Love,

Josh

September 14, 2010

Today Josh and I went for his pre-op appointments at the hospital.  We met with the surgeon, Dr. David Sutherland, for about an hour and a half.  There were lots of consents for Josh to sign, and many forms to fill out.  Everyone who has this surgery is enrolled in University of Minnesota studies, and they want to know your quality of life before the surgery, and they will ask these questions again at 3, 6, 9, 12 months and annually thereafter.  They will also do blood work at these intervals.

There was a doctor from Korea with Dr. Sutherland.  He is studying this surgery and will observe Josh's surgery.

We also met with another doctor who is a Transplant Fellow (Dr. Stone).  He will also be at the surgery.  (There will be a lot of doctors, residents, fellows, and observers at the surgery it seems.)  Interestingly, he is interviewing for a position at Weill-Cornell (NY Presbyterian) on Friday.  That is where my dear mom (who I miss terribly) was treated for her lung cancer.  It is a small world.

Dr. Stone was reviewing some of Josh's scans and showed us the latest CT scan of his pancreas.  This scan was done in May I believe.  Josh and my untrained eyes saw the spots all over that pancreas without anyone pointing it out to us.  It looked like polka dots.  (Those spots are the calcifications which are the hallmark of chronic pancreatitis.  You're not supposed to have any spots.)  Dr.  Stone showed us that Josh's pancreas is very small, much smaller than it had been.  He feels it will come out easily.   No wonder the radiologist here said Josh's condition was "severe".

Josh and I have made contact with another chronic pancreatitis sufferer, Trisha.  She is from New Haven.  She and her mother are planning to come out here for an evaluation and have already made their initial contact with Louise.  She and Josh have been texting and chatting, and I think they will be a nice support for one another back home.

Trish has been to many doctors at Yale-New Haven and Milford Hospital, and not one has told her about this surgery.  What is that all about??  Here kid, take your pain pills and live in agony.  Sorry but you'll have no quality of life.  I don't understand this at all.  She found out about the possibility of this surgery when her mom read an article in the September Reader's Digest.  Janie told me about this article too, but I haven't been able to find Reader's Digest here.  Anyhow, the article is about a soldier whose pancreas was badly injured in Afghanistan.  They shipped him to Walter Reed, where his pancreas was removed.  They sent his pancreas to Miami where the islets were extracted and sent back to Walter Reed and infused into the soldier.  He is doing great and is not on any insulin.  If anyone has the article, could you please scan it and email it to me?  (I found newspaper articles about it on the internet but can't locate the actual article.)

Day of surgery: about 4 hours for the removal of the pancreas; they expect to be finished with the islet cells by around 5PM.

I will post any news.

xxoo
Deb

September 11, 2010

Excerpt from "Boston Med"

Tonight I was watching (on Slingbox) an episode I recorded a while ago from Boston Med.   It was the final episode of the season, and at the end there were little interviews with some of the doctors who had appeared on the show.  Imagine my surprise when I heard this one (watch the video above).  Josh and I got a really good laugh out of it.  In case it's hard to hear, he is saying what the basic surgical tenets are.  At the end, he says "and don't f*** with a pancreas."

Today Josh was feeling a little better so we made a little road trip.  We went to the movies, although we saw separate ones.  He saw The Expendables, and I saw Going the Distance.  My movie got out first, so I walked over to the mall that it's in.  I took this picture for my sister Janie and Olivia Jane and anyone else who loves See's Candies.

Not only was there See's Candies, but this is the SECOND mall in Minnesota where I've seen them.  For anyone who doesn't know, they make the most delicious chocolate lollipops, among other things.  Why are the malls so much bigger and better in Minnesota??

I've had a lot of questions about the brisket Janie sent.  Yes, she made everything, including the challah (well, except the gefilte fish).  She sent it on dry ice.  The brisket was still frozen when it got here.  Amazing.  Anyhow, I went to make dinner.  First thing I realized was that I had no suitable baking pan, so I switched to the microwave.  I had picked up a box of pilaf rice and started to make that.  No measuring cup, and I needed to add 1 3/4 cups of water.  So Josh and I got resourceful.  We found a 12 oz bottle of Coke Zero, washed it out, figured out the conversion, and used it to measure.  (Of course, later I found the measuring cup....)  The dinner was delicious, and Josh wants Aunt Janie to know that her challah in particular was fabulous!

Josh and I talked at dinner about 9/11.  It is hard to believe it has been 9 years.  I am sure we all remember where we were and what we were doing when we heard about it.  We will never forget.

Four more days of waiting, and then we're there.

BTW, we love all your comments and emails.  Keep 'em coming!

xxoo
Deb

September 10, 2010

When I tell you there are funny and strange things around here I really mean it.  Check this out:

The Pedal Pub

This is a Pedal Pub.  When it drove up,  it was filled with young people pedaling and drinking.  If you look closely, you can see blue seats, with pedals by the feet.  The Pedal Pub stopped in front of this bar, and most of the patrons got off and went into the bar.  A few stayed on the Pedal Pub.  I guess Josh and I can now say we have seen everything.

We were at the hospital today for some pre-op testing for Josh.  While he was in the test, I went to see Louise, the Transplant Coordinator.  While we were chatting, a pediatric endocrinologist came by to speak to Louise, and I was introduced to her.  (She looked younger than Josh.)  This M.D. coordinates a lot of the studies that they do at U of Minn.

I told her that we had asked and been given permission to freeze some of Josh's islet cells for possible use in the future.  She said, "oh yes, I know all about that.  Everyone's been talking about it."  (Good for us, we created a little buzz.)  She told me that they are doing research at U of Minn where they are taking cells from a person's skin and getting the stem cells from that and using that to produce islet cells.  Now my scientist and M.D. friends, I may some of that jargon wrong, but hopefully you get the drift of what she was saying.  Fascinating!  This gives me hope that if Josh needs more islet cells in the future, research is being done on other ways to produce them.

Has anyone seen any good movies?  Gregg and others saw the George Clooney movie "The American" and said it was awful.  I was thinking of seeing something (else) this weekend.  Any recommendations?

We are counting down the days.  Thanks to everyone for the support.


xxoo
Deb

September 7, 2010

Our first Twins game!

Today Josh and I attended a Twins game at Target Field in Minneapolis.  The Twins beat Kansas City. It was a lot of fun and we enjoyed it tremendously.

It was freezing cold out tonight and Josh realized about 10 minutes before we were leaving for the game that he failed to bring long pants (jeans) to Minneapolis.  Being resourceful, he found an extra blanket in the closet which we brought and happily used.  I wore jeans, a sweatshirt and a fleece jacket and was quite happy.  I even found gloves in the pocket of my fleece jacket, which I was happy to wear.

In Minneapolis we are staying in the area known as the "Warehouse District".  Target Field is also in this district.  We walked the four blocks to the game and back, which was great.  We didn't have to mess around with parking or other modes of transportation.  The light rail has a station right at Target Field, so they really make it easy for people to attend.  This is the inaugural season of the stadium.  It is quite beautiful.  Of course, it has been many years since I attended a major league baseball game.

Gorgeous scoreboard.

They sell hot chocolate at the game.

People are very friendly here.  We have been asked many times where we are from and what we are doing in Minneapolis.  Do we have accents?  We don't think so, but clearly we are identified as non-Minnesotans.  (They tell us we do have accents, but of course we know it's not us, it's them!)

The Vikings are playing the Saints on Thursday, and that is also nearby.  We'll have to watch that on TV.  It is completely sold out, and features a pre-game show with the Dave Matthews Band and Taylor Swift.  It's because the Saints won the Super Bowl last year so they're being honored.  (I don't think the concerts are happening here.  I think they're happening somewhere else and being beamed to the stadium.)

They do love their sports here.  I keep looking for Lindsay Whalen but I haven't spotted her yet!  (For those who don't know, she is a WNBA player who played for the Sun for several years and now returned to her native Minnesota to play for the Lynx.)

So don't complain to us about the hot weather in Connecticut.  We're freezing here in Minnesota.  Summer ended quite abruptly here.

We're really starting to count down.  Eight days until surgery.  Josh is getting pretty anxious about it.  So am I.  However, we are both looking forward to having it behind us and starting the road to healing.

We love to hear from you.  Let us know if you're enjoying the blog.  And I promise it will become much more interesting next week!

xxoo

Deb

September 6th, 2010

Hey all-

Nothing really new here. We had a pretty boring weekend. We didn't go out that much, as I am still not feeling well. It's a mix of a bad head cold and now my pancreas is giving me trouble. I will be O.K., it just stinks. We went down the road to "Chipoltle" to get take-out burritos last night. We ordered them online, and when I went inside to pick them up, they still were not made. They helped four or five people AFTER I got there, then made our order. I was not feeling great, so I must've looked angry, because they gave us our dinner for free. I should try that more often.

We're going to a Twins game tomorrow night against the Royals. For those who know me well, you know that I'm a huge baseball fan, so it should be awesome. Mom got us good tickets.

I hope everyone back east is O.K. after your "hurricane", and everything is getting back to normal. Emily- I hope school is going great. Senior year what whatttttttt.

Love all of you.

Written by Joshua Benson 9/6/10

September 3, 2010

Josh in his new glasses.

Today was a really boring day.  Josh is not feeling great, but actually it's because he has a head cold.  So he slept most of the day.  We did manage to get out at the end of the day and got his new glasses and had dinner.

I thought I'd tell you a few funny things about Minnesota:

• They have roads called, for example, 35W N.  Yes, it's "west" "north".  (Of course, there's also 35W S.)  Unbelievable.  As one with no sense of direction, this is not a good situation.
• During busy times, there is a traffic light on the on ramp on the highway.  When it turns green, ONE car can go forward and merge onto the highway.
• Their traffic lights are mostly on the side, not above.  This took some getting used to.  Yes, I went through more than a few yellows at first.
• They have roads with dotted lines up the middle, but they are two way roads and you cannot actually go over the dotted line.  Not sure why it's dotted instead of solid, but I did think I was on a one-way once when it was actually a two-way.  I didn't make that mistake again!
• While Minneapolis is a grid, they have numbered "streets" going one direction and numbered "avenues" going another.  OK, so I'm totally confused.  We are on 2nd St., but there's also 2nd Avenue.

Driving has been an adventure, but we're getting pretty good at it.

Now to your so-called hurricane or tropical storm Earl.  While you had hot weather, high humidity, rain but not much wind, we had freezing cold temperatures and LOTS of wind.  I checked weather.com several times today, and Waterford had 10 mph winds, while Minneapolis had 35 mph winds.  With the wind chill, it was about 50 here today.  Josh and I were cold, but the natives were out in shorts, short sleeves, and were still sitting outside at restaurants to eat.  They are a hardy lot.

Miss you all.  Love to hear from you.

xxoo

Deb

September 2, 2010

Me, Terry, Karen and Mom at Stub and Herb's after lunch

Today was a pretty lazy day. I slept in (9:30) and immediately FaceTimed with Grandpa on our iPhone4s. It was good to talk to him, especially where we can see each other. It's much more personal.

We proceeded to make our way across the Mississippi to meet Karen and Terry for lunch. We met them at Stub and Herb's, a local restaurant located on the University campus. On weekends, it gets packed with college kids before and after sports games. It's located about a block from the new Gophers football stadium, which is absolutely gorgeous. We had a lovely lunch, and ended up staying for about an hour after we finished eating, just talking. Once again, it was just great talking to Terry and Karen, and absorbing as much information as I could about his experience with the surgery and how it has affected him. They have both been so helpful, inspirational, and we all became fast friends.

It's funny how life brings people together. We meet because Karen saw my Angry Pancreas shirt, and asked me about my pancreas. If I was not wearing that shirt, we probably would not have met, and I would not have two new, great friends who I relate to so much. It is quite interesting how even with such different backgrounds, and different experiences in life, the four of us are brought together by this horrible disease. Terry was nice enough to show me all of his "diabetes gear" (meter, needles, lancets, carb book, etc.) and explain how everything works. It was good to see everything visually, and they both helped us understand better how the insulin and testing works. I pray for Terry and Karen, and only wish them the best as they go forward in their journey. Hopefully they get to leave soon, as they are planning to, because they have been here way too long. I am positive we will keep in touch, because they simply are awesome people.


After lunch, we went to our favorite grocery store, Lund's, for a few items, and I needed to return movies to Redbox and get a few new ones. When we got back to the hotel, we videochatted with Emily. She was in the senior lounge at school. I am still in denial that my little sister is a senior. I really miss her, and I can not wait to see her, even if it is going to be after surgery and I probably will not remember it.

At 4:30, we left the hotel bound for the Rosedale Mall. I got an eye exam at VisionWorld, because I have not had one in a couple years, and I am looking into getting a pair of Rx sunglasses. My Rx changed a bit, and we found out that our insurance covers a lot up here, so I got a new pair of glasses at VisionWorld. They should be ready tomorrow. For those of you who know me well, it's going to be a big change from my normal frames. I can not wait.

Mom and I then went to dinner at the Macaroni Grill, which was pleasant. They let you create your own pasta dish, so I was happy. I'm starting to get used to watching my carbs and sugar intake for after surgery. Mom and I have been talking about how much my diet and lifestyle is going to change after all of this. Fine by me. Much better than CP. After dinner, we stopped at a SuperTarget for a few things we needed for our humble abode, and came back to the hotel. I'm getting ready to go down to the gym and ride the bike for a while, and Mom is taking it easy. We don't have anything big planned for the next few days, except getting my new glasses and going back to the Mall of America for round two.

Thanks again to everybody for your continued support.

Dad, Emily, and Sitka: I miss you guys more than you know. Love you.

Written by Joshua Benson 9/2/10

September 1, 2010

The four story mall.

Guess where we went today?  OMG, the Mall of America is huge!  It has to be seen to be believed.  Name a store, it's there.  Some stores have several locations in the mall.  There's even this:

(I really took this photo for Trudy, who loves QVC!)

One of the side effects of CP is extreme fatigue.  Josh certainly has that, especially after spending the last few months more in the hospital than out.  So it was great that he was able to get out to the mall with me.  We walked around the entire place.  I'm hoping we can get a good walk in every day, because I do think it will help his recuperation after the surgery if he builds up his strength.

Here are a few other photos.  I hope you get the flavor of it.  This mall is BIG!

One direction in the mall.

Looking at the Nickelodeon playground.

We got back to the hotel, and Josh was wiped out, so it's been a quiet evening.

Tomorrow we plan to meet Terry and Karen for lunch.  If you recall, Terry already had the surgery and will be going home in a few days. Bernadette, the woman who got a surgery date after Josh, emailed us today to let us know she and John got home to Florida OK.  We are creating our own little support group.  It has been fantastic for Josh to speak to other CP sufferers.  Try as we may, none of us really understands what they go through like another CP patient.

Here's an interesting fact.  The estimated incidence of chronic pancreatitis is 2 out of 100,000.  Pretty rare, and rarer still to have it be idiopathic, which is what Josh has.

We're trying to watch the weather reports to see if the hurricane is coming to Connecticut.  They don't seem to be too interested in following it here in Minnesota, so TV coverage is very spotty.  Anyhow, we hope it will stay out to sea.

That's it for today.  Miss you all!

xxoo
Deb

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