Friday, April 8, 2011

Letter From Troy

Sent on Wednesday, April 6, 2011

I was reading your page on pancreatitis I hate having to spell that work even tho I should know how to after all this time. Anyway around 12 years ago now I had a sudden attack of necrotising pancreatitus, with pancreatic cysts caused by excessive drinking. All the warning signals were there but even tho I saw a doctor about the pain etc he basically ignored it and didn't test for it. After the pain set in I called an ambulance and that was the last thing i remember for the next month as the cysts had burst and sent me into toxic shock and coma I woke from the coma on life support and didn't know what had happened till I was told later on they hadn't expected me to survive and amazingly my other organs hadn't died or failed somehow. After another month and a half they basically kicked me out of the hospital still with a gaping hole in the center of my neck from where they had inserted the respirator which still hadn't healed up. They almost didnt let me onto the plane to get back home due to how i still looked and having problems staying upright after losing 20kg and weighing in now at a massive 50kg.

After arriving home I went and saw my local doctor that day who put me back into a local hospital for a couple more months till i was much more recovered. LOL that's the hospitals in this country for you. kick you out soon as you can walk basically.

So now Ive lived with chronic pancreatitus for around 12 years i rarely take painkillers unless Im in agony and have found that my dietary habits are much different now. When I feel my pancreas playing up I immediately stop eating and only drink water and eat very light food it seems to help that i only eat once a day also less work digesting casseroles stews etc are good also less work for your stomach and pancreas to do. Sounds like you got off a bit easier since I am in pain 99 pecent of the time and really hope they work out how to fix it for good since Im only in my mid 40s now and get sick of the lifestyle I need to live now :P hopefully they will get that stem cell research heading that way.

Its a fast learning curve considering I had never heard of the condition til after it happened. Had to believe that such a small insignificant organ can cause such havoc and they cant do a thing for you except shove a drip in your arm and feed you painkillers.

Hope your gets better I know I wont anytime soon lol


Note to Troy - Thank you so much for your letter and sharing your experience. I completely understand that 'getting better' isn't something on anyone's list of options at this point. Hopefully, that will change. Twelve years! Wow! And you're still rockin'. Nice! My goal is to live ten years from the time I was diagnosed. My dream is to live 20 years. You're at twelve. I hope I'm so lucky. Again, thank you for sharing your story. Keep in touch! If you ever hear of any real progress that is made in this area, I'd love to hear about it... as would we all who suffer from this disease. It might not be the best lifestyle but it certainly beats the alternative!

As far as eating one meal a day, I guess for me it depends on the current condition of my pancreas. Sometimes living on broth and tea is the best I can do (now, when I am not really eating I am hyper sensitive to the level of potassium and Iodine I am bringing into my body since the kidney can fail and stop the heart without the potassium intake - which was something I learned the hard way a few months ago). Sometimes I can eat regularly within limits. Drinking coffee with cream, having yogurt with honey, maybe a little toast with butter and jam, or steak with ginger for dinner. But, whatever meal I have, I try to keep it small so that my pancreas doesn't have to work hard at any given time. Large meals are always out. Small meals on a semi regular basis is my goal.

12 years is so long! I recently read a statistic that said 50 percent of people diagnosed with pancreatitis die within two years - most of those people die from complications related to drinking or diabetes. Staggering statistic but not surprising. The reality is that with constant thought to diet and lifestyle it seems possible to continue down the road of happy living. You are proof of it. My hat is off to you!

Just for the record, I was hospitalized for severe acute pancreatitis in France, not the US. It was the French doctors that scared me off well enough to refuse to go back. That being said, I have done my research and full well understand that our doctors anywhere do not understand the disease nor do they know of a cure. Therefore, I simply distance myself preferring to pay attention to what my body is telling me, doing a little research into foods and symptoms and taking my health into my own care. Because, if nothing else, at least I care about it and that was not the experience I had with the doctors, nurses or hospital in France.

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