National Pancreatic Awareness Month
Posted by juliebernal | Filed under Acute & Chronic Pancreatitis
Nov. 3, 2011
For the ones that lost the hard battle, the ones who wake up everyday to only find themselves too ill to get out of bed, for the ones who dream of a day without disabling pain, for the ones who aren’t able to eat or keep fluids down, for the ones who seem to spend more time in a hospital bed than their own, for the ones who have had endless surgeries, for the ones who fight for their life, for the ones who have cared for and stayed by the ones with this disease and for the ones who reach out and continue to raise awareness…these are the people I connect with. Raising awareness! Raising hope!
Tags: National Pancreatic Awareness Month
November 11th, 2011 at 4:43 pm
Julie, you are an inspiration!
After losing my mother to pancreatic cancer, I got involved with Pancreatic Cancer Action Network to help raise awareness of this awful cancer. I now find myself at a cross roads as I am facing life with chronic pancreatitis. I am lucky enough to live in Minnesota and was referred to Dr. Freeman earlier this year. Dr. Freeman thinks I’m a candidate of the TP/AIT surgery and I have a consult scheduled at the end of November.
It is a really big, life changing, decision to make and it helps me to see how those that have gone before me are doing in their new life.
Julie G
November 15th, 2011 at 4:05 pm
Hi Julie G. Wow! I’m so sorry to hear about your mother. And so sorry to hear that you are now suffering from pancreas issues too. I’m sure it is hard to hear that you may need to have the surgery but to get approved as a candidate is also good news. Means there is hope. It’s a big surgery, but I think of it as life saving. I would love to hear more about you history and also about your mother if you would like to share. You are very lucky to live in Minnesota and to be so close to what I think of as the best pancreas and transplant center. If you have the surgery there, you will be in great hands. Also, there is a study that they are doing right now. I’m part of it and I know others that are too. So far the results have been great. Please keep me posted. Many thoughts to you.
Julie
December 13th, 2011 at 2:03 am
Hi Julie. I had my consult and decided to go ahead with the surgery. It will happen at the end of March.
A quick history of me – my mom was diagnosed with pancreatic cancer in 2006. During one of her hospital stays, I started having abdominal pain and finally ended up in the ER. I had my gallbladder remove about a week later. I kept having ‘ghost’ gallstone type pain for about 9 monthns before things calmed down. In August 2010, the pain and ‘ghost’ gallstone type pain returned. I ended up with acute pancreatitis at the end of August 2010 after an ERCP. I had been having severe pain after eating for about a month before and had the ERCP because the doctor thought he had seen a stone in my bile duct. I never really felt better after the acute pancreatitis and was finally diagnosed with SOD in January 2011 after another ERCP. I continued to have pain with eating, lost 55 lbss, was diagnosed with chronic pancreatitis and finally referred for the TP/AIT in September 2011. I have all the hope in the world that this surgery will take care of my pain, allow me to eat again and remove any risk of pancreatic cancer.
What study are you in? I haven’t had a chance to talk to Louise about all the little details yet.
Julie G.
p.s. tell Susan she’s in my prayers for a smooth surgery and quick recovery.
December 14th, 2011 at 10:00 pm
Hi Julie G.
I’m so happy that you’ve been approved for the surgery. Your history and timeline sounds similar to mine. It’s weird because a few years ago I didn’t really know of many SOD patients from my support groups that ended up with chronic pancreatitis. I always thought it was possible based on how bile, the ducts and sphincters work but it always seemed that most doctors (ER) just thought it was a crazy idea or thought I was making my symptoms up. So when I was told I had CP after my last ERCP a year ago I was surprised and shocked all at the same time. Now it seems like almost everyone is getting ready to have the TP/AIT. Wow! A year an half ago I never even heard of the surgery. I feel blessed that the surgery has come as far as it has. Three years ago it was very hard to get approved for it (even now as you know there are a lot of tests) but I think now they are learning that it is better to get a sick pancreas out sooner than later before it starts to damage other organs. I think you are right on about the risk of cancer. And seeing your mom go through that first-hand, I’m sure it is a personal topic. But like you said, the TP/AIT brings hope. It’s a big surgery and support from family and friends is important – wanting to live and not giving up plays a big roll.
Have you had a glucose boost test yet to see how your blood sugar levels are? Based on that number, if your sugar levels are doing well and also based on blood work, you may be asked to be part of the study. It involves taking a medication that they hope will help the islets during and after the transplant. You can ask Louise about it. Just tell her you’ve heard about a study and was wondering if you are able to be apart of it. I don’t know all the details about who can be approved for it, but it won’t hurt to ask.
Keep me posted on any new information and let me know when you find out when in March your surgery will be. Until than, try to keep yourself as healthy as you can. I will keep you in my thoughts.
Julie B.
December 16th, 2011 at 9:04 pm
Julie, my surgery is scheduled for March 23. Seems so far away, but I know it will be here before I know it!
I agree that I think they are finding that having the surgery earlier is better. Dr. Freeman thinks it’s due to the narcotics, how much and how long, that makes a difference during recovery. I’m doing my best to keep my usage down, but there are days that I feel like I don’t have a choice.
I did have the glucose boost tests but I haven’t see the results. Man, for such a seemingly simple test, it was tough. I react a lot to protein, so had pain for most of the afternoon! I will have to talk to Louise about the study to see if I’m a candidate for that as well.
Julie G