One of the good things that have come from pancreatic disease and having a big mouth I have been able to talk at a few pancreas conferences and attend many others. It is a great way of learning and passing what I learn on to others. My main goal is to pass what I learn from other patients onto the doctors and what would be helpful in our fight against pancreatic disease. Many doctors know who I am now and call me by my first name when we see each other. I’m very humbled by the fact that not only do they know who I am, but they remember what I have told them. Believe me, they listen and are working to make a difference. I am no more special than anyone else with this disease, I just have a platform I can talk from and use my big mouth.
The conference brings in not only some of the best in the field of pancreatic disease but many young doctors who are just beginning and learning. The conference is put on by Dr. David Whitcomb and UPMC hospital. Dr. Whitcomb is one of the very best if not the best in the pancreas field. He no longer sees patients but is very involved in research, teaching and patient advocacy. He truly gets it! He pushes hard for patient rights and treatments. He is also a great listener! He listens to what we need. I had the honor of meeting him a couple years ago and we are able to talk now at conferences in our spare time. This time I was able to really talk to not only him but several others about a few areas that really need attention.
First, pain control. Fact- Pancreatitis is one of the most painful diseases there is. There are a few medications that work well on the pain. We all know about the “drug crisis” that is going on in our country and I’m very outspoken that we are victims of that. We are often called drug seekers unfairly.
Second- In hospital stays. When we are admitted to the hospital we do not get the care we need many times. We do not see our specialists in most cases, we see the hospitalists or care teams. They often lack the knowledge of our disease. They do not understand and just try to do a basic care which doesn’t work for us. They talk about personalized care but during a hospital stay we often don’t get that. Getting our medications at the proper times is very important in our disease and even more so if you have diabetes also. This is a huge problem. By the time we ask for our pain medicines, enzymes or insulin it comes way after the fact and isn’t as effective. Insulin orders are often just the basic orders and not at the correct dose we are supposed to have. People with pancreatic insufficiency have Type 3C diabetes and it is treated differently.
Third- Mental care. I have made the statement that anyone with this disease has depression to some degree. Anyone with a chronic illness, especially one like pancreatitis, need mental support. Often this is reserved for those who are getting surgery not the everyday patient. This needs to be addressed.
One of the most frustrating parts about having pancreatic disease is still the lack of knowledge out there about it. Thankfully the NPF has made some great progress in this area and continues to do so. It is the patients, caregivers, support people and medical people that can make a huge difference even if is just one step at a time.
If you have ever filled out a brick in my wall, the doctors read them! Many comments have been made about them. It is your voice telling your story!
It was great to see many other chapter chairs and others who make the National Pancreas Foundation work. It is the hard work and dedication of these people that are making a difference. As the NPF mission statement says – The National Pancreas Foundation provides hope for those suffering from pancreatitis and pancreatic cancer through funding cutting-edge research, advocating for new and better therapies, and providing support and education for patients, caregivers, and health care professionals.
I preach Hope and Courage! Hope for those suffering and Courage to fight.