My Fight with Pancreatitis: The Recovery…For Now At Least
Well, I’m here and able to write the final part of my series about my experiences with pancreatitis and its complications. I’ve now been out of the hospital for a month and I still have one of the two drains that I had when I left the hospital. Four weeks ago I was incredibly weak, to the point where I couldn’t really sit up for more than a few minutes at a time or walk over 50 feet without a lot of discomfort.
I almost immediately stopped taking pain medications when I left the hospital because I have found no amount of oral medication will relieve my pain. Once I did this I got to go through the withdraws that were expected after being on high doses of dilaudid for the better part of two and a half months from all my hospitalizations. Within about two weeks of my release I had regained my appetite, adjusted to saltier foods and was getting strong enough to work on my laptop from home. I got cleared to go back to Chelan and work by my surgeon 10 days after my release. I came back to Chelan the first week of March and continued my recovery.
I spent my first week back unpacking my new house, picking up some “toys” and trying to build up my strength and relax as much as possible. On March 11, 2013 I went back to work full-time. As of this writing I have officially put in 85.5 hours this pay period and will put in 7.5 more tomorrow. I finally feel normal for the first time in three years. I’m also half the size I was when I went in with my necrotizing pancreatitis. I’m now 156 pounds and need to gain about 10-20 pounds to be at a healthier weight.
Overall, it’s been a long road to recovery and at this point I know I still have to have an internal stint placed in the near future. I also know that I won’t be counting that everything will get better. There is a good chance that I won’t have many more issues, but with all the time I’ve spent sick I might as well be mentally prepared for any more haterade that my body wants to throw at me. Since I’m an engineer and a giant nerd I’m going to throw out some numbers:
Weight:
Original Weight: 305 lbs
Maximum Weight: 390 lbs
Current Weight: 156 lbs
Net Loss: 149 lbs (Original), 234 lbs (Maximum)
Hospitalizations:
By Year:
2007 – 1 (January)
2008 – 0
2009 – 0
2010 – 4 (March, June, October, November)
2011 – 4 (July, August [2], October)
2012 – 3 (January, December [2])
2013 – 3 (January [3])
By Days:
2007 – 3
2008 – 0
2009 – 0
2010 – 207
2011 – 19
2012 – 18
2013 – 41
TOTAL DAYS – 288
Surgeries and Procedures:
Surgeries – 5 (2010[3], 2013[2])
Procedures – 4 (2010, 2011, 2013[2])
I’m sure there are plenty of other metrics I could use to quantify these last three years. I mean I’ve probably had 20+ doctors and close to 100+ nurses. All of them are responsible for me being here today. There are so many of them that naming them would require a whole new article and a level of memory I don’t have (partly because I have some fuzzy memories of many parts of the last few years). Instead I’ll just say thanks for all the hard work and taking care of my sick ass. All I can hope for now is that this mess is behind me and I can finally move on. At least I can go swimming in the lake this year so that’s definitely a bonus.
If you have made it this far, congratulations. If you just stumbled across this article, it’s the last one in the series. If you’d like to read more about my battle with pancreatitis follow the links below, they are laid out in order:
Part I: Background
Part II: The Explosion
Part III: The Long Haul, Part I
Part IV: The Long Haul, Part II
Part V: The Recovery…Or So I Thought
Part VI: The Complications
Part VII: The Recovery…For Now At Least
My Fight with Pancreatitis: The Complications
The last installment left off after my second internal stint procedure in October 2011. At this point we were all pretty sure that I was going to get better and hopefully leave all this pancreatitis business behind. And aside from a mysterious stay in the Lake Chelan Community Hospital in January 2012 things started to get better. I didn’t have any real stomach issues and aside from being constantly annoyed by my almost two year old colostomy I was doing good.
I started getting a lot of projects at work including my first ever large capital project and several smaller ones. I also started building up annual and sick leave which was a new experience since I had spent most of the first two years of my working life burning it as fast as I got it. In June I got pegged to take on a cyber security role that would require a bunch of training and overtime. Things were really starting to look up and my pancreatitis issues hadn’t bothered me in over six months. Then the accident happened.
I was on training in Branson, MO driving around in a rental car when a lady rear-ended me at a red light. Aside from being sore for a few days everyone seemed to be just fine. About a month later I was back in Branson working on my Security+ certification when I started to get a small stomach pain. By the end of the week I was practically doubled over and I immediately went to the ER at Virginia Mason in Seattle after landing at the airport. They admitted me and I spent another birthday (my 26th) in the hospital with a “flare-up” of pancreatitis. Turns out it wasn’t really pancreatitis it was just the fluid that my stints normally drained forming a new pocket in a different part of my abdomen. This pocket cleared up after a few days and I went back to work for the next several months with some minor stomach pain but no real complications.
All of a sudden December happened and that was pretty much a disaster. In early December I woke up one night and was shivering uncontrollably with a heart beat of 180. I went to the Lake Chelan hospital at 3AM and within a couple of days tested positive for bacterial pneumonia. I spent three more days in the hospital and was released on antibiotics. After this I went home for a week long break for Christmas at my parents’ house.
The first weekend went by and we had a nice Christmas Day with my Grandma. The next day however I started to get a pain in my gut again and as usual by that evening my heart rate was back in the 150′s to 160′s. We took a CT Scan and found that my spleen was quite swollen and that I also had C. diff. a bowel condition often caused by heavy doses of antibiotics (thanks pneumonia!). I spent another 10-12 days in the hospital and was penciled in for a surgery to remove the spleen later in the month. We went back to Chelan so that I could get my stuff moved into the new house I was renting. I got to spend one night in my new house before the pain in my abdomen was too much to bear.
After my first day of work in January I went to the ER and was hospitalized again. They gave me pain medication and took another CT Scan and found that I had an abscess in my spleen that would need to be drained before we did surgery. I was packed up in an expensive ambulance and took a 7.5 hour ride from Lake Chelan to Vancouver. The next day I had a drain placed and after a few more days of pain medication I was released to the care of my parents until my surgery.
It seemed like an eternity because I was still in a lot of pain from my swollen spleen but January 23, 2013 finally came and I went in to have my spleen removed and colostomy reversed. According to my surgeon it was the hardest splenectomy he has ever performed and took almost six hours to complete just the first part of the surgery. After the spleen was gone they moved on to cutting through all my scar tissue and reversing the colostomy. This also took another six hours but was very much successful. I woke up the next day with the breathing tube still down my throat (again one of the worst feelings ever, and I don’t recommend it). After a couple of hours it was removed and the recovery supposedly began. Sadly, at about 1 AM the next day we noticed that the drain I had was filling with what looked like blood. We would empty it and within 60 seconds it would fill back up.
One of my surgeons was on-call and in an operation at the time so I spent the next 2.5 hours getting blood with about a million people in my room. Everyone had assumed that I had an internal bleed and surgery was the only option. At about 3:50 AM I got rushed down to the OR so they could cut me back open and find the bleed. It turns out that there was just a lot of blood left from the surgery and aside from a couple of “minor” bleeds I would have most likely been OK. I spent the next week recovering from my second surgery in three days.
At this point they started to let me eat, except that all of a sudden I stopped going to the bathroom. We knew there was a problem and a CT scan showed that there was a hole still in my stomach left from the operations. My spleen had been so swollen that it was fused against everything in the area. In the process of removing it a hole had been inadvertently cut in my stomach and now I was going to get to wait for it to heal on it’s own before they would release me.
Fast forward about 2.5 weeks and I was finally eating and drinking again. After a month in the hospital I was released to my parents’ care. Within two weeks I went from being weak and suffering from the withdraws of painkillers to my first day back at work. In my next installment I’ll go into a little more detail of my current recovery, the plan for future care, and probably some general observations.
For more of my story, see:
Part I: Background
Part II: The Explosion
Part III: The Long Haul, Part I
Part IV: The Long Haul, Part II
Part V: The Recovery…Or So I Thought
Part VI: The Complications
Part VII: The Recovery…For Now At Least
My Fight with Pancreatitis: The Recovery…Or So I Thought
So picking up where I left off last time, I had just been released from the hospital. Since I was pretty weak they had made sure I left with pneumonia and flu vaccines. I went home and spent the next two or three days at my parents’ house and hung out with family and friends in the area as I recovered. Everything was going great until the Friday after my release when all of a sudden my arm started to swell up and bruise like crazy. We ended up having to spend about 10 hours in the ER at Southwest Washington Medical Center while we tried to figure out what the problem was. Fortunately, it was just a bad reaction to one of the vaccines and I was released from the hospital on the following Sunday.
I again went back home to my parents’ house and started my recovery in earnest. It turns out that having half a pancreas will make you a diabetic (though in my family this would probably have happened anyway). I spent the next two and a half months rebuilding my strength and going to doctors for follow-up appointments. I had two of my drains pulled when they stopped producing fluid, but the last one just kept draining. It was at this point that we decided I should go up to Virginia Mason and have a brand new procedure performed to place internal stints between my pancreas and stomach. This would allow for my pancreas to drain internally and take away the need for the last external drain.
The procedure itself happened in late November 2010 and was frankly a piece of cake. It took all of about two hours to complete and I woke up feeling pretty good in the scheme of things. The day after the procedure I was released from Virginia Mason (after having the best hospital breakfast I’ve ever had). We went back to the Washougal area that day and I spent the last few weeks of my recovery hanging out with old friends.
After a late December appointment with my surgeon I was finally able to go back to work. I started on January 3, 2011 and pretty much assumed that I’d be fine now that I had recovered. And for about six months I thought I was right. Sadly in late June I sliced my thumb in half and had to have it stitched back together. About a month later I came down with a fever and went to the local hospital to get checked out. It was determined I had some kind of infection and for some reason it was making my stomach hurt. This happened two more times in August and then just seemed to mysteriously disappear.
After these recurring hospitalizations everything pretty much cleared up and I went down to Portland to do a two month rotation in our design branch. The first seven weeks went great and I was feeling good. Then on my last weekend in town I went to Buffalo Wild Wings with a friend to watch the WSU vs. Stanford game. That night I started to get stomach cramps out of nowhere. I figured it was maybe some food poisoning but by the next morning they had intensified. I went to visit my parents and ended up seeing an urgent care doctor who assumed it was pretty much some kind of bug. I spent the night at my parent’s house and woke up with even more pain than the day before. We went to see my primary care doctor and he had me admitted to the hospital.
After performing a CT scan we finally found what was causing all of my trouble; my stint had dislodged and there was a pocket of fluid pressing against my diaphragm I spent a week in SWMC and was transported by ambulance to Virginia Mason to have more stints put in. This time I was almost positive that everything was going to be better. Boy was I wrong.
For more of my story, see:
Part I: Background
Part II: The Explosion
Part III: The Long Haul, Part I
Part IV: The Long Haul, Part II
Part V: The Recovery…Or So I Thought
Part VI: The Complications
Part VII: The Recovery…For Now At Least
My Fight with Pancreatitis: The Long Haul, Part II
Last time I left off after the first half of my stay in the hospital. I had just almost found an early grave, but fortunately I survived my bout of septic shock. I woke up several days later in the ICU, again with no recollection of what had happened to me and with a whole lot of tubes going into my abdomen with a bunch of gross looking fluid coming out. While I was unconscious several drains were placed to try and help drain the necrotic fluid that was still all over my abdomen. It was wreaking all sorts of havoc on my organs. My spleen, colon, gallbladder and several other organs were damaged. We had to wait another six weeks before my condition had stabilized enough to perform my second surgery.
The only way we were going to fix my problem was to cut me open and remove debris from as much of my damaged pancreas as possible. At the same time we needed to remove whatever damaged organs we could and clean out as much of the necrotic fluid as possible. My surgeon spent over 8 hours removing parts of my damaged pancreas and completely taking out my gallbladder. He also installed four additional drains into pockets of fluid that he didn’t have time to clean out. I was still in a lot of pain, but it appeared that things were finally getting better. A couple of weeks later it we thought that the surgery had been a success and I was finally allowed to start eating and drinking again.
Oh yeah, I forgot to mention that at this point I had gone close to five months without any real food in my system. Turns out though that the pancreatitis had done plenty of damage and I wasn’t ready to start eating. My colon had a stricture in it that prevented me from actually passing the food. I ended up getting pretty sick and on my 24th birthday no less. The next day, September 4, 2010 we tried to place a stint in my colon to correct the problem. Four days later we found out that the stint had actually perforated my colon and I was back in the Pre-Op room waiting to have an emergency colostomy (one of my worst nightmares). Again after over 7 hours of surgery and 8 more units of blood I was finally all fixed up.
Five weeks later, on October 16, 2010, I was deemed physically strong enough to leave the hospital. At this time I still had three drains and my pancreas was still leaking fluid into my abdomen. We knew I was going to need a fairly new (experimental) procedure to have internal stints placed to drain the fluid into my stomach. I went home at a very light 170 lbs (over 135 lbs lighter than when I went in 6.5 months earlier. I had lost so much muscle mass that even walking more than about 50 feet was incredibly tiring. I spent the next three months at home with my parents, regaining my strength and trying to get fit enough to go back to work. It would be the first week of January 2011 when I finally made it back to work at Chief Joseph Dam. I had hoped that my ordeal with pancreatitis was finally over. In a way the pancreatitis portion was over but I had no idea that I would be experiencing complications for up to two years. My next post will cover my “recovery” from the 2010 pancreatitis bout and many of issues that followed.
For more of my story, see:
Part I: Background
Part II: The Explosion
Part III: The Long Haul, Part I
Part IV: The Long Haul, Part II
Part V: The Recovery…Or So I Thought
Part VI: The Complications
Part VII: The Recovery…For Now At Least
My Fight with Pancreatitis: The Long Haul, Part I
In my last post I talked about the initial onset of my necrotizing pancreatitis and described my first month and a half in the hospital. Most of that story I have no recollection of it happening. When I lost consciousness in early April 2010 I honestly could not tell you what happened to me. All I can remember is that I was watching TV at night with my Mom in the hospital room and then the next thing I remember is waking up on a sunny day practically unable to talk. I am told that I actually woke up late in the day on Mother’s Day (May 9) for the first time after they removed my breathing tube. Regardless, when I woke up I saw that I was connected to half a dozen different IV medications, my skin was red and peeling and I was apparently on dialysis. All of this was in a hospital over 150 miles away from where I had been and over a month had somehow passed.
As I came out of my month long “nap” I had a lot of questions. First and foremost, where am I and why am I here. As it turns out my kidneys had failed and the only way to have them hopefully regain function was to put me on 24-hour a day dialysis. I had also received some serious antibiotics while I was incapacitated and had a fairly wicked reaction to some Vancomycin. This is why my skin was red and peeling, it would take almost six weeks for the skin to finally stop its peeling. For my first question I had awakened in the ICU at Harborview Medical Center and I was receiving daily dialysis treatments as my kidneys slowly started showing signs that they were working again. This was the first time that the decisions of my doctors and hard work of many nurses had brought me back from the brink of death. I have since heard that at the time of my transport I was probably hours away from dying and it was the work of the ICU doctors and nurses at Harborview that kept me alive. After another two weeks of consciousness in the ICU I was sent down to the third floor where we basically had to wait for the necrotic fluid in my abdomen to hopefully form a pseudocyst.
For those of you who are wondering a pseudocyst is basically when the collection of fluid forms a membrane on the outside. We needed to wait for this because trying to drain the fluid off me without the pseudocyst forming had already almost killed me once. We waited until Friday, June 13, 2010 for the pseudocyst to form. At about 0700 I went in for the first of what would be five surgeries. The residents under the guidance of an attending surgeon removed one of the largest pseudocysts they had ever seen. In the end I was told that they had removed 13 liters of necrotic fluid. The surgery itself was a very bloody affair, it took over 8 hours, and I required 9 units of additional blood. About 10 hours after the surgery I woke up with the breathing tube still down my throat. It was one of the most miserable experiences in my life, I spent the next six hours just wishing that they would remove it. It was like trying to breath through a straw, except that every few seconds it filled my lungs with air even though I wasn’t really able to do it myself. When they did finally remove the breathing tube I finally noticed all of the pain I was in.
I spent another two weeks at Harborview before they decided they could release me into the care of my parents until the next surgery. There was just one problem I had been feeling poor and not really eating and they hadn’t been running my blood to check for infection prior to my release. I got out on June 25, 2010 and went back to Washougal, WA to stay with my parents. By the time I made it home I was feeling terrible and had one of the worst nights just wishing I could get to sleep. The next day my heartbeat was slightly elevated in the morning and I just didn’t have the energy to do anything. By 7PM that evening my heart was beating at about 180 BPM and was quickly climbing. We went over to Southwest Washington Medical Center in Vancouver, WA and I went from the emergency room lobby to a room faster than any other point in my life. At this point my heart was beating at 195 BPM and they started giving me some chemical that made my heart stop attempting to get it into a normal rhythm. After about two attempts they put me out and I guess had to shock me 2-3 times to get me into a more normal rhythm. I was apparently in septic shock (this was the second time I almost died). This seems like a good stopping point for now, next time I will continue the story with the last half of my hospital stay.
For more of my story, see:
Part I: Background
Part II: The Explosion
Part III: The Long Haul, Part I
Part IV: The Long Haul, Part II
Part V: The Recovery…Or So I Thought
Part VI: The Complications
Part VII: The Recovery…For Now At Least
