Great report in Minnesota!

Dr. David Sutherland and Josh, January 5, 2011

You can see how calm we now are, as neither Josh nor I have updated the blog and it's over 2 weeks since we have returned from Minnesota.

It was of course VERY COLD in Minneapolis.  More about that later.

Josh's appointment was on January 5th.  He started with the Boost test - the test which shows whether or not he has islet function.  Then we saw Dr. Sutherland, Dr. Bellin, and naturally there was a doctor from Korea and also a medical student observing.  At that point, the results of the Boost test were not available, but Dr. Sutherland was very pleased with Josh's progress.  Dr. Bellin reviewed Josh's logbook of blood sugars, and right then and there she told Josh to stop taking his Novolog (the insulin taken with meals)!!  This was absolutely great news.

Dr. Bellin and Josh

Josh still takes 18 units of Lantus every morning.  Lantus is the long acting insulin.  He still tests his blood sugar upon waking, two hours after meals, and at bedtime. 

After we returned to Connecticut we got the results of the Boost test, which showed that Josh does have islet function (we really knew this already because he was requiring less and less insulin).

This week Josh saw Dr. Quevedo, his local endocrinologist.  Dr. Q was also very happy with the results of Josh's boost test.  He reviewed Josh's logbook of blood sugars for the last two weeks, and was very pleased.  So it appears that taking Josh off the Novolog was exactly correct - hooray!  Stopping the Novolog has also stopped the severe lows Josh was experiencing - not a pleasant experience.

So now to the weather in Minnesota.  When we arrived it was lightly snowing, but no one seemed to care much about that.  I guess they get so much that it is not a big deal.  It lightly snowed almost the entire 3 days we were there.  And it was bitter cold.

The day before the appointment, I decided to venture out to do a little shopping.  The hotel shuttle took me to the area known as "Uptown".  They told me they wouldn't be able to bring me back to the hotel, however, and that I could take a taxi or the bus.  Minneapolis has an amazing public transportation system, so I thought I'd be adventurous and try the bus.   

Things were going great, I was on the bus, and I thought wow, this couldn't be easier.  Then I realized that the bus I was on was not going to go to the University area.  I asked the bus driver,  and he told me where to get off and what bus to transfer onto.  I'm sure the wait for the other bus was not more than 6 or 8 minutes, but it seemed like HOURS.  It was so bitter cold.  I had on my NorthFace jacket which is a fleece zipped into a shell, warm Uggs boots, and I was still frozen.  Minneapolis is a great city, and beautiful in the summer, but I don't know how they survive those winters.

However, Minneapolis is home to Dr. Sutherland and his wonderful colleagues so we will always love it.  What an amazing surgery Dr. Sutherland pioneered, and continues to revise and improve.  This surgery saved Josh's life, I am sure.  We went from over 17 hospitalizations in 2 1/2 years for severe intractable pain, with most hospitalizations lasting 2 to 4 weeks, to a young man who today is working full time, starting working out at the gym (today), looks and feels healthy, and has NO pancreatic pain.

The last hurdle is to wean off all pain meds, not an easy proposition.  Josh is on less than 1/2 of what he was taking before surgery, and he continues to wean down.  He is doing it according to Dr. Sutherland's suggested schedule, with help from our dear friend Dr. Alan Greenwald.  It will take some time, but he will get there.

Happy snow day everyone!

Debbie

Going to Minnesota tomorrow

Josh and I are traveling to Minnesota tomorrow.  He has a check-up with Dr. Sutherland on Wednesday January 5th.  We will post an update from the appointment.

Josh is continuing to do well.  He played a full round of golf in Florida in December.  He's lost over 55 pounds and looks terrific.  He is working full time.  His dose of Lantus insulin (the long acting once a day insulin) has been reduced several times.  He is taking a lower dose of Novolog, which is the insulin he takes to cover his food.  He continues to have incidents of very low blood sugar (in the 50's and 60's, should be around 100).  We are hoping this is because his islet cells are working, and that his insulin will get adjusted downward again.  We shall know soon!

Here's the weather forecast for Minneapolis:

Mon 3

Tue 4

Wed 5

Thu 6

Flurries	Snow Shower	Mostly Cloudy	Flurries	Partly Cloudy
N/A	20°	11°	23°	15°
High	High	High	High	High
7°	-3°	10°	7°	0°
Low	Low	Low	Low	Low
Chance of Snow: 30%	Chance of Snow: 40%	Chance of Precip: 10%	Chance of Snow: 30%	Chance of Precip: 20%

We will be bringing warm coats, hats, gloves, and boots!


Stay warm!  We will try to do so also!


-Deb

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