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What I learned at PancreasFest 2018 – a Patient Perspective

I learned the importance of team science and precision (individual) medicine and the importance of individual advocacy.

As a survivor of acute necrotizing pancreatitis, total of 12 months in the hospital over the past 2.5 years where I lost 120 pounds, most of Pancreas, my Gallbladder, 4 feet of my colon, and many other complications including Diabetes and EPI.

With each hospital stay, especially the trips through ER I have noticed the need for individual advocacy, I need to know as much about my condition(s) as possible and I need a way to communicate this as succinctly as possible and often. Attending the conference and listening and talking to the other patient(s), including doctors only confirmed the need to further prepare this information. Some have suggested a Medical Passport, when looking at this option I find many examples and even a few apps, however, the ones that I reviewed all had a major problem. They were all too long, 16 pages, 21 pages and some that required an internet connection. I realize with my interactions with most doctors, while highly educated and skilled, most only have a limited time to deal with me or to review my records. A 21-page passport is still too long.

What I created was a two page document that outlines what the doctor needs to know in 5 minutes or less so that they take the better next step. Providing this condensed information saves them the time in going through my full records. My primary hospital attempts this but I have found the summary record lacks what the doctors need and is normally outdated. My version of the medical passport contains, Name, DOB, Height, Weight, Conditions(7), Allergies(5), Procedures(7) (major ones), Drugs (6), Vitamins (10), Implants (mesh), Pain Med history, Doctors w/contact info (4) and my most recent blood work results.

Doctors have commented that this is very helpful.

I think the examples and concept of a medical passport are a great idea but in practice are too long to be helpful. I believe a short condensed version is needed until one can reach their Pancreas specialist.

Another comment I picked up was that this was somehow a HIPPA violation. Since my medical records are legally my records, I am free to share my medical information as I deem necessary. My goal is the best care for me, not privacy.

Other items I learned was the importance of individual medicine, we all react and respond differently to all the procedures, drugs, pain and psychological aspects. Preparing your own medical passport helps one become their best advocate or the help a family member step into that role.

Personal takeaways for me, morphine to avoid (yes in my last hospital stay I was given a morphine pump for the first time and it did not work for me). Triglycerides when high can have a negative impact on outcomes (my last blood results show moderate high triglycerides, working on lowing those, it can’t hurt). Vitamins show some promise (I have taken Selenium in the past and am now taking it again along with C, D, E).  Inflammation as a factor in CP and in recovery. Finally the importance of the mind-gut connection and the psychological effects of both the disease, the hospital stays and physical limitations this has caused, I still struggle with depression mostly in how disabled this has left me, I am fortunate in that my long hospital stay has had little psychological effects (5 months in coma probably helped and a major lack of memories also).

My final takeaway is that I can look forward to a normal life expectancy, while I was told this by my surgeon it was nice to hear it again and see that is backed up by statistics and that I can continue to make changes to improve my health. CP will not beat me.