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"Interesting" is a Scary Word

     
Hoban 'Wash' Washburn: This landing is gonna get pretty interesting.
Capt. Malcolm Reynolds: Define "interesting".
Hoban 'Wash' Washburn: [deadpan] Oh God, oh God, we're all going to die?
 - from "Serenity"

Something you definitely never want to hear from a doctor, particularly a world-renowned surgeon, is "that's an interesting case." Unfortunately, that's what we heard last Friday after Ben's third (and ultimately fruitless) ERCP.

Since the end of August Ben has lost ten pounds, which isn't quite horrifying but it certainly isn't a good sign. His appetite is extremely diminished, and his energy levels are almost nonexistent. At most he is able to go out for an hour or two, and then he is to exhausted to carry on. We knew he had a very large stone blocking his pancreatic duct, and our fervent hope was that his latest endoscopic procedure would finally succeed in removing that stone, and that life would go back to normal ("normal" being a decidedly relative term). Unfortunately, the stone did not come out. Instead, the surgeon came out and showed us some images of his pancreas which showed two significant strictures with a slight bulge between them where the stone is still lodged. The stent from the previous surgery had still been in place, and if the stone was truly the problem then the stent should have allowed for plenty of drainage. Instead, Ben's lower pancreas is still scarred, diseased, and inflamed. The stone is just a red herring, a symptom of the larger problem and not the actual issue. As the surgeon explained all this, he told us that he had sent the images to the specialist up in Birmingham, who immediately replied back his assessment that it was an interesting case. That's a lot like Dr. House finding a patient to be fascinating - it's great for him, and makes for excellent drama, but really sucks for that particular patient.

At this point we have reached the end of what can be done locally. Ben's lower pancreas needs to be removed, in a procedure called a "whipple". Normally you hear about that type of surgery due to pancreatic cancer, but there is absolutely no cancer involved here. It is the Atypical Cystic Fibrosis which is systematically attacking Ben's pancreas. The upper pancreas is still healthy and can be saved (at least for now), but in order for Ben to have a fighting chance at not becoming diabetic, he not only needs the whipple but also an islet transplant. What happens is, the portion of the pancreas that is removed is essentially dissolved and the islets of langerhans are harvested and then grafted onto the liver. About 50% of the time the islets will successfully implant into the liver and continue to manufacture insulin. Apparently there are only three surgeons in the country who are qualified to do this procedure, the closest (and best) being located in Birmingham, Alabama.

So at this moment Ben's local surgeon is making arrangements for Ben to go to Birmingham for surgery. We hope to hear something today, but obviously with the Thanksgiving holiday things may be a little slower to arrange than usual. Our goal is for the surgery to happen early next week. It is about a nine hour drive to get to the hospital, and it is expected that Ben will be recovering in the hospital for 3-5 days following the surgery. This is major invasive surgery with all of the associated risks, and which will leave behind a significant abdominal scar. He will have staples in his stomach, and even after being released from the hospital it will be at least another three weeks of recuperating at home before he begins to feel well again. We are all more than a little bit terrified about this operation.

Still, with any luck by Christmas and his Birthday Ben will finally feel well again for the first time in months. That would be a very nice Christmas present indeed.


3 Comments:
Maureen Deal
I'm sorry that Ben and all of you have to go through this. Please know you are in our thoughts and prayers.
Maureen Deal
melissa buck
I just wanted to also let you know that Ben and those who love him are continuously in my thoughts. Hopefully by this point you all are in alabama and that after this surgery and recovery ben can get back on his feet and put all this behind
him.
missy
melissa buck
Just wanted to wish you, ben and all your loved ones a very happy holiday. I hope that ben is feeling well and in good spirits and 2014 is a great year for you all!
Missy

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About Shmoolok

The word "shmoolok" is a mashup of the longtime computer handles for my wife and myself ("Shmooby" and "Lokheed", respectively).

I originally created this website to be a place for my family to connect, but it has since grown into something a little different.

As for me -- I am a father, a husband, a son, a software developer, and a writer. On any given day I am not sure how good I am at any of those particular things, but I do try my best.

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