My Adventure With Pancreatitis or, Don't Let it Fool You, Your Abdomen is Out to Kill You
Marky Mark
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2014 started off great. The kids were doing well in school, my wife and I were on great terms, work was going well - life was good. You know where this is headed.
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1. Board Game: Halli Galli [Average Rating:5.80 Overall Rank:4569]
Marky Mark
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I had been having some issues with my gallbladder over the last year and a bit. The first time it happened, I went in for some ultrasounds but nothing conclusive showed up, so we left everything alone and the pain went away for a while.

However, last May it started cropping up again. New ultrasounds showed some small crystals in the bile ducts. After discussing the issue again with my surgeon...
 
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2. Board Game: Up Periscope [Average Rating:5.61 Unranked]
Marky Mark
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I decided to go with something called Endoscopic retrograde cholangiopancreatography, or an ERCP, to deal with the crystals. It's basically a souped up endoscope, with the ability to clear the bile ducts and insert stents as well as look around. Option B was a straight up gallbladder removal, but given the size of the crystals this seemed a more appropriate level of treatment.
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3. Board Game: Bionic Crisis [Average Rating:4.67 Overall Rank:14423]
Marky Mark
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I went in for the ERCP mid June. I was sedated for the procedure, and when the surgeon spoke to me after he said they cleaned some junk out of the ducts, and all appeared to be well. After a short stay in the recovery room, I went home.
 
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4. Board Game: Emergency! [Average Rating:7.27 Unranked]
Marky Mark
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Once I got home I was feeling tired, so I took a nap. I woke up a few hours later in severe pain - as bad as any gallstone attack. I suffered through it for an hour to see if it would subside before we called the hospital back. The Gastroentestonologist said "probably pancreatitis - go check into the ER." Some friends were gracious enough to drive me there.
 
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5. Board Game: Hospital Rush [Average Rating:6.00 Overall Rank:6682]
Marky Mark
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I checked into the ER, and after a time was put onto morphine for the pain. I was in an ER bed for a few hours, but they checked me into a ward fairly soon thereafter. At this point my memory basically stops for a long time, so I am relying on what my wife has told me and kept recorded.
 
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6. Board Game: Emergency Ward 10 [Average Rating:4.00 Unranked]
Marky Mark
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In the general ward things did not improve. The pain got worse, my abdomen swelled - I was very unhappy and no one seemed to be able to do anything about it. The ward simply wasn't equipped to handle someone in my state. Eventually things got bad enough they called over the intensivists to have a look at me. I remember being asked if I wanted to go to the intensive care unit and moaning out a "Yes." Fortunately the ICU folks agreed with my assessment and I was whisked off to a strange new world.
 
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7. Board Game: Clinic Expansion: ICU free bonus tile [Average Rating:7.25 Unranked] [Average Rating:7.25 Unranked]
Marky Mark
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I don't remember much of my stay in ICU, but I remember being taken there. I was in extreme pain - the worst I remember (but apparently not the worst I experienced). I remember them having a hell of a time trying to get a central line into my neck, and being so hot and feverish that I was being packed in ice. Despite how insane everything seemed to me, the staff in the ICU were incredibly calm and professional.
 
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8. Board Game: Don't Play With Drugs: The Game [Average Rating:7.33 Unranked]
Marky Mark
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Once in the ICU, the doctors and nurses were able to get me on some major painkillers. The problem was fluid was building up in my abdomen, creating pressure on everything inside and a lot of pain for me. The drugs left me mostly pain free, but practically comatose.
 
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9. Board Game: Mickey Mouse's Waiting Game [Average Rating:0.00 Unranked]
Marky Mark
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At this point it became a waiting game. The challenge with pancreatitis is determining what to do and when. If you act too agressively and operate early, you can aggravate the situation and make it much worse. And in many cases, the pancreatitis will turn and resolve itself without surgery. However, when the pancreatitis turns bad, it requires rapid and aggressive surgery or it will likely turn fatal.

The surgeons were thus all leaning to the wait and see side. However, the fluid continued to build in my abdomen and was pushing into my chest. This was starting to cause organ failure, including kidneys and lungs.
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10. Board Game: Pressure Cooker [Average Rating:6.35 Overall Rank:6685]
Marky Mark
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With all the pressure building inside me, not only was it damaging my organs but it was making it labourious for me to breath. Eventually it got to be too much, and my lungs basically gave up. At this time I was given a tracheotomy and placed on a ventilator.
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11. Board Game: Weakest Link [Average Rating:4.81 Overall Rank:14431]
Marky Mark
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While the ventilator provided some relief for my body, I continued to get weaker and weaker, but the surgeons continued to argue about the best course of action. There was a disconnect between the doctors - the surgeons wanted to wait and hope it would turn on its own, while the intensivists were pushing for surgery.

Things didn't turn. Eventually one of the intensivists came right out and said "if you don't operate on him in the next 24-48 hours, he will not have the strength to survive an operation." At that point the hospital's head of surgery stepped up and agreed to operate.
 
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12. Board Game: Operation [Average Rating:4.07 Overall Rank:15794]
Marky Mark
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I had three operations over the next few weeks. The first one didn't involve much but it saved my life. When they opened me up, they found everything was so swollen and disfigured that the surgeons couldn't identify anything they were looking at inside me, so they were not able to remove the dead tissue at that time.

However, by opening me up they relieved all the pressure on my organs and were able to properly drain the fluids that were accumulating.

For the second surgery things had settled down enough they could tell what they were looking at and were able to clear out most of the dead pancreas. However, I still wasn't improving at that point. It took a third surgery to clean out some more tissue before I started turning around.
 
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13. Board Game: Turn the Tide [Average Rating:6.80 Overall Rank:945]
Marky Mark
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Finally my condition began to actually improve. Vital signs were more stable. My pain were decreasing. They started backing off the drugs, and a few weeks after my memory started to return.
 
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14. Board Game: Looking Good [Average Rating:0.00 Unranked]
Marky Mark
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Things were starting to look positive. I was no longer in immediate threat of dying. There were challenges though. For some reason at this point my heart decided to get in on the fun, and I had several cardiac arrests, eventually leading to me getting a pacemaker.

As I was improving, they started to wean me off the ventilator so I could breath on my own again. That process has some of the worst memories of this whole ordeal for me. My diaphragm had atrophied to the point I couldn't breath on my own if I wanted to. So we began a weeks long process of slowly turning down the ventilator, exercising my diaphragm and building up my breathing ability.

This sounds fine in theory (except it turns regular breathing into real exercise), except many times during this process my lungs would simply just lock up and stop breathing. If you've ever had the sensation of being unable to inhale when you're crying or after a hard blow to the stomach, it was much like that - I could not for the life of me inhale.

Other times I would be able to inhale ever so slightly, but it was such a short breath it was practically useless. Fortunately I had respiratory technicians watching me a lot of the time. Every time I stopped breathing, they came and worked their magic and within minutes I was breathing again. Those were scary minutes though. After each incident, the nurses would tell me "You're safe here." It never felt safe after that happened.
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15. Board Game: Frog Rally [Average Rating:5.72 Unranked]
Marky Mark
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Eventually, though, my diaphragm built up enough strength they took me off the ventilator. Apparently this is a major problem for older and weaker patients - once they get on a ventilator, they are simply unable to recover enough strength to get off it again.

I still had the tracheostomy in my throat at this point. But with the ventilator off they could 'cork' the trach, allowing me to talk. I spoke my first words in about three months. I sounded like a robot alien frog.
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16. Board Game: Acuity [Average Rating:5.92 Unranked]
Marky Mark
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with the ventilator off and some strength recovering, I was deemed well enough to be moved out from the ICU and into the High Acuity Unit - a level of care in between the ICU and the general wards.

What I mostly remember here was I had a corner room with a great view, and physiotherapy started in earnest. While I was doing some physio in the ICU, due to my being knocked out most of the time it primarily consisted of the therapists moving my limbs for me in an effort to retain some range of motion. So effectively I had been immobile in bed for roughly two months.

This has a major effect on your muscles. At this point I couldn't even sit upright from an elevated bed. After several days of concentrated effort, I was with the assistance of two people able to stand upright for a few seconds. Walking was impossible at this time.
 
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17. Board Game: Acquire [Average Rating:7.36 Overall Rank:211]
Marky Mark
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I wasn't in the high acuity unit too long before they booted me back to the ward. Having spent so long with such tight and intensive care I was very nervous about going there. Not helping matters was that I picked up hospital acquired pneumonia at this time. That was two weeks of gargling, coughing, and puking hell.

My trach came out at this time too, which felt great. But whenever I coughed, it would blow the bandage off the hole.
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18. Board Game: Food Fight [Average Rating:6.05 Overall Rank:4595]
Marky Mark
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I should mention that for all this time I have been unable to eat anything. During ICU I was back and forth between a feeding tube down my mouth or nose into my stomach and Total Parenteral Nutrition (nutrition through an intravenous tube).

Once I got into the ward I was on a feeding tube again. Eventually we worked up to the point where I started adding liquids and then solids to my diet. It was frustrating though, as any time a complication arose or something seemed off, the first thing the doctors would do was cut off food and stick me back on a tube.
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19. Board Game: Progress? [Average Rating:3.00 Unranked]
Marky Mark
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I spent a long time in the general ward. At first things were generally improving. I still had one drain in my abdomen that was trying to keep the abscess in my abdomen dry. But it was constantly getting plugged by the thick, fibrous fluid being drained. I became a frequent flyer to interventional radiology.

We were starting to talk about potentially discharging me to an in-patient rehab facility around September. But then things began a slow, steady decline.

I started spiking fevers in the evening. My appetite diminished and I had trouble keeping food down. In addition to the primary abscess, I was forming more fluid collections that required draining. Then I caught a superbug.
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20. Board Game: Pandemic: Contagion [Average Rating:6.48 Overall Rank:1606]
Marky Mark
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Somehow one of my abscesses ended up infected with a hospital acquired superbug. Internal Medicine went with the carpet bomb approach of antibiotics, putting me on a two month course of three heavy duty drugs. It was very unpleasant.

The side effects of these antibiotics are substantial. Major nausea that was only partially controlled with anti-emetics. Major diarrhea that wasn't controlled with anything. They took me off food and put me onto intravenous feeding again.
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21. Board Game: Operation [Average Rating:4.07 Overall Rank:15794]
Marky Mark
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After weeks of continuing on the antibiotics and IV nutrition, my condition was not improving and if anything was getting worse. With physio I was getting stronger - at this point I could walk around the ward a little bit with a walker - but my health was getting worse. While we had always known it had been a possibility, the surgeon came and made it official - he was going to need to operate on me again.
 
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22. Board Game: Blood & Roses [Average Rating:7.62 Overall Rank:3136] [Average Rating:7.62 Unranked]
Marky Mark
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I went in for my second round of surgeries at the end of November. My wife was at a meeting when I got the call to the OR. I called her and let her know I was going in - this was the first time I was truly scared. The surgeon said he didn't expect me to die, but he was also clear I was not in as good a shape as he wanted me to be.

My wife arrived just before the operation was finished. Like everything about this case, it ended up being more difficult than expected (and difficulty was expected). In addition to clearing out more dead tissue from the pancreas, they found a damaged section of bowel that needed to be removed.

I also had developed a fistula, or hole, in my colon, which was transmitting fluids and fecal material between the abscess and the colon. So the surgeon installed an ileostomy to give my colon a rest.

When he spoke to my wife afterward, he said there was also a little bit of bleeding. What we found out from records we received well after the fact was a little bit of bleeding required me to get six pints of blood during the operation. Little bit indeed.
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23. Board Game: End Zone [Average Rating:6.90 Unranked]
Marky Mark
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After the surgery I was in the ICU for another two weeks and was kept open for one further surgery. When they stitched me back up I was on morphine for pain again. This sucked. Everyone I ever talked to about morphine said they had these happy hallucinations - ooh, I'm a flower type of thing.

Not me. I hallucinated the ICU was some sort of weird prison. Or that people were trying to break into the ICU and kill me. Apparently I was so convincing I even scared a few nurses.

When I got out of ICU and back to the ward I was able to get onto some other painkillers, much to my relief. From here things made slow and steady progress. I got back onto food. While the surgeries definitely caused some major steps back in terms of physical development, I started working up again there.

Finally in mid January the doctors started discussing sending me home.
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24. Board Game: Home Sweet Home [Average Rating:6.17 Overall Rank:8540]
Marky Mark
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And so it happened. Mid january, nearly seven months after first checking in, I went home. A good friend drove me back. It's been a major adjustment - I've had to quickly learn to be much more independent. I'm still a long way off from my pre-illness strength, probably 1-2 years out from it if the doctors are right. I still have one drain and the ostomy in - they remain until a few other internal issues have fully healed.

It's been terrific to be around my family again. Believe it or not, seven months in the hospital will have an effect on your marriage. Our oldest two kids quickly latched back onto me when I got home, but I can definitely see there have been some emotional impacts on them.

One of the hardest moments during my stay was when my (at the time) 1.5 year old son came into my room and didn't recognize me. That hurt more than I can describe. But now at home I've been able to spend quite a bit of time with him and we are definitely reconnecting.

All in all this has been an insane ordeal, for my family as well as myself. I thank God that I survived at all - it truly was a miracle. My surgeon is THE GUY for pancreas issues in our area, and he said I was the worst case he's ever seen. I've gained so much respect for my wife who became a single mother who had to care and advocate for an invalid for such a long time. She has more strength than I think she even realized.

Most of all this has made me much more aware of how little time we have together. You really never know when everything could be taken away. I hope to spend the next years spending much more time with those I love. I encourage you to do the same.
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