Stories of Courage
My fiancée was diagnosed with chronic/acute pancreatitis in May of 2012. Few days after his birthday he and I were on our way to the hospital because of the abdominal pain he was suffering. My fiancée, Adam, had a seizure in the driveway, nearly missing the drain grates. I was scared and did what I was not to do, put my hand in his mouth so he wouldn’t bite his tongue. I saved his life and took him to the hospital, where he was in the ICU unit for 7 days. Both of our lives changed forever. They did not know what was wrong with him at that time. He was transferred to a better hospital in out area, which specializes in certain areas of body. At that hospital, he had emergency surgery to remove his gallbladder and his pancreas “exploded” per the doctor. Adam only has 1/3 of his pancreas remaining. Adam had to be released from the hospital with a feeding tube and urinal tube. I cared for him and still do, day and night. The feeding and urinal tube was removed, he gained some weight back but not all of it. He was in and out of hospitals for over a year with chronic pain. All the doctors thought he was a pain medication junkie. We both got judged, time after time. Our so called “friends and family” abandoned us at our time of need. Our trust in people, family, and friends has disappeared. Adam is in so much pain everyday. It hurts my heart that I cannot take this pain away from him. He struggles with pain everyday of his life. We live his disease, non-stop. I love him and would give my life for him. He is my soul mate and we planned our wedding 3 years ago and this happened. We want and plan to get married. We want to on the beach, but it is very hard for him to travel to one. We have been together almost 7 years and our lives have been changed forever. Not one person, besides my Father (he is a scientist) understands his disease, nobody. They do not understand his suffering and pain. He wants to do so much, but he can’t. We want to do so much, but we can’t. I would give anything for one day of Adam not being in pain, one day. His doctor is scared to give him any more pain medication and he doesn’t understand the amount of pain that Adam is in. He thinks he just is a pain med “junkie”, also. He is not and I would love for everyone to stop thinking that we both are. Trusting people is not an option for us anymore. We both want to but every time we do trust someone, they judge us or walk away from our lives. It is ok with both of us. We love each other so much and we are all we need. Us and our pets. All I ask for is a break for both of us, once in a blue moon and for someone to understand his pain and suffering. He needs more help and it is not available. Why is this disease judged so much and why does nobody, not even doctors, care about his suffering? We are happy because we have each other and we make the best of every situation. Love can heal, almost everything.
Last year I was diagnosed with pancreatic cancer. It was found at an early stage and upon leaving my physician office I was already scheduled for surgery.
It was hard to encompass the diagnosis I was given or comprehend the enormity of the surgery that was going to occur. I went through many emotions. I underwent surgery for removal of my gallbladder, a portion of my pancreas and part of my bowel. It was a long process. I was unable to keep any food or liquid down so they had to do a follow up surgery to try and correct the problem. I remained hospitalized for approximately 6 weeks. After I went home the process continued with recovery and a port was placed for access for chemotherapy. I underwent chemotherapy for four months.
The process was hard on my body emotionally and physically, as well as hard on my family. I am proud to say I am a survivor of pancreatic cancer. I want to encourage people and families who are going through this process that a positive outcome is possible through my own success story. Also I want to support reseach and make more people aware of pancreatic cancer.
Imagine having a servere pain that comes and goes, never knowing when it will hit. You go to the doctor but they tell you it’s acid reflux and send you on your way. You know something isn’t right and finally it gets so bad you can’t walk or stand up. You go to the emergency room, they run some tests and it comes back with severely high lipase and amylase levels, you are having an attack of pancreatitis. They tell you to call your doctor in the morning and send you home. You have more attacks over the next few months, your pancreas has decided to digest itself, causing intense, severe pain and irreparable damage. Your doctor tells you that you carry a mutated gene that causes the disease, nothing did caused it and nothing you can do will prevent it. There is no cure, there is only management in the form of heavy narcotics and hospitalization for severe attacks. This will be a lifelong disease. One leading to a multitude of other complications as your pancreas continues to damage itself. Your digestive enzymes will stop functioning. Your islet cells will become to damaged to produce insulin. Your chances of developing pancreatic cancer highly increases with every attack. Every shooting, stabbing pain you have, you are more and more aware that dangerous damage is being done and all you can do is ‘manage’. Your frequent visits to the ER result in being labeled a medication junkie. And when your pancreas becomes so damaged that your amylase and lipase levels, the one thing doctors rely on to diagnose your disease, are no longer elevating, the ER doctors are more convinced you are just addicted to narcotics and offer no help. Now imagine you are a child. You are 6 years old and at the age of 8 you are labeled a junkie. You have a chronic condition that is misunderstood, even by medical professionals, and you’ll have it forever because remember, there is no cure. You are a child, scared everytime you feel that stabbing pain, wondering which part of your pancreas is taking the damage this time, wondering if you’ll have enough pain pills to get through the attack because you won’t be able to get another refill for awhile, wondering if it’s going to get so bad you’ll have to go to the hospital, again. But you try to not worry too much because you’ve come to realize stress can bring on attacks or make them worse. Oh the irony! It’s easier to not complain than to have to explain try and explain to people outside your family. It’s invisible on the outside, you don’t ‘look sick’ so it can’t be that bad right? You go through the years just trying to have a life, persevering through the continued obstacles you are facing and just hoping the life you have been given will be a life worth living. November is Pancreatic Disease Awareness month. It’s not a ‘popular’ disease with special sporting events, catchy sayings or Tshirts. But it’s real. It’s a disease that has no cure or treatment, often leading to the thought of no hope. It’s misunderstood and lacks awareness in the medical community. It kills, from the complications it causes and going undiagnosed for too long. Our hope is that by sharing Hanah’s story, Hanah’s Hope, we can bring more awareness to finding a cure for pancreatic cancer and help people understand the debilitating effects of pancreatitis.
When I was 8 years old all of the doctors thought I had a “flu” or “strep throat”. Then when I was 10, we decided to go to a different doctor and they diagnosed me with chronic pancreatitis. This whole concept changed my life when they doctors told me I was not able to play basketball or run anymore. My parents and I were sad because I had been playing basketball for my entire life, no matter what happens to me. After one more year I couldn’t handle the pain anymore so I quit and it sucked because my team was like a family to me and hurt for me to quit just because of this. So my parents and I asked them if I could get a transplant and they said no because it’s not that bad compared to other kids and that touched my life because I knew that I need to stay strong and I need to probably wait a long time till I can get a transplant. Even though I did all these things that hurt me I still stood strong because I knew I had to push through these episodes even if I’m not feeling good. But what I do know and won’t quit is staying strong strong even when I’m really sick. NEVER GIVE UP NO MATTER WHAT HAPPENS!!!! (H.o.p.e= hold on pain ends.)
Julie’s Story of Courage
What I Have Learned from Pancreatitis
YOU are the EXPERT on your body. Your doctors know medicine but they don’t know you. Give them the information they need to do their job well: If you are feeling poorly, track your symptoms and your food, so you can give your doctors DATA, not anecdotes. This will help both of your see patterns to your health. NEVER be afraid to ask for help. You know when something is wrong. Don’t wait because you are scared or discouraged. If you are sick, it will only get worse; if you aren’t sick, then you’ll know and can get on with your life. You only have one chance at life; don’t blow it. DO YOUR HOMEWORK! Educate yourself. If your case goes well and simply, great for you! Follow your doctors orders and get well. But if things aren’t typical and you keep having problems, do some digging. Educate yourself through respected medical sites and journals. Find out how to help yourself and what problems can come up. BECOME a partner in your health care. Ask your doctor questions, ask for advice on how to maintain your health, when to call in, when to go to the ER, what diet to follow. And always be polite and listen even when you are really scared or angry. If your doctor knows you are trying, he or she will try harder, too. And always TRY their advice. If it doesn’t work for you, go back for another discussion. Ask to see a DIETICIAN. I’ve gotten great advice on what to eat and recipes to try. The kinds of food you eat can really influence your health and mood. EXERCISE how you can, when you can. Nothing is worse than being stuck on the couch in pain for days or months while life passes you by. After being sick for a long time, I was sent to rehab, which helped a bit, and then a medical wellness program, which helped a lot. Nothing has given me more satisfactiont than finally being able to go for short walks and hikes again. DISABILITY PERMIT? If you have pancreatitis you may qualify for a handicapped permit, based on your inability to walk long distances. This may sound funny, but during pancreatitis episodes a handicapped permit is such a life saver! It was really hard for me emotionally to ask for one, but I am glad I did. It makes it so much easier to go shopping or pick up my daughter from school when I’m sick. And when I am well, I’m glad to leave the parking space to someone who needs it more. Talk to your doctor about it. STAY CALM and ENJOY LIFE. It isn’t easy. If you are doing the right things and still getting sick, it’s hard to accept that this is how your life will be. I’ve had a lot of anger about my life being “taken away” from me. But I am learning to accept the new normal. I think this is a life-long process. But we all need to keep trying to enjoy all the small things and find something to laugh at. BE KIND TO YOURSELF. And to others. It will make you feel better. And it is easier to bear the tough stuff when you hold love and laughter in your heart. This is my story if you want to read it. Continued here.
Steven’s Story of Courage
I am a two-time survivor of pancreatic adenocarcinoma (Whipple procedure, 2007; liver surgery after metastasis, 2010) who has been cancer free and in excellent health for the past 4 1/2 years. When my liver metastasis was diagnosed, the oncologist talked to me briefly, recommended palliative care and walked out of the room. Instead, I aggressively persuaded my doctors to pursue treatment that was bold, aggressive, decisive and rapid. This meant a PET scan to determine if there was metastasis beyond my liver (which there fortunately was not) followed by liver surgery to remove the tumor. Throughout nearly all of both my bouts with pancreatic cancer I was able to maintain a positive, upbeat attitude. This enabled my loving support group – my wife, children, family, relatives and a close knit caring community of friends to remain energetically encouraging to me during my entire cancer experience. In contrast, had I projected an image of negativity and complaint, many people would have stopped being supportive and/or found excuses not to interact with me. This is because of the truth that everyone has their own problems and I would have worn out the good intentions of others be regularly complaining to them about their own issues. I did not fully realize this during my cancer journey, but my choice of maintaining a positive attitude has profoundly affected my life in an extremely positive manner. I now look forward to each day with a positivity and vigor that I never knew before. Since my cancer experience, many of the smaller day-to-day life issues and disappointments that virtually all of us have simply melt away into the “well…its not pancreatic cancer” category. In this way, I consider my pancreatic cancer experience, as physically and emotionally perilous as it was, to have provided me with a great gift…that of perspective to see life’s more trivial issues for the small inconveniences that really are.
I first had my first acute attack in August 2012. They thought it was gall bladder related so I had a cholecystectomy and after a few days I was released. I had no problems for the next 6 months or so. In February 2013 I again had another acute attack and was admitted to the hospital twice in the next 10 days. No cause was found or determined at this time for the acute attack. It was in the hospital that I began to think about some things and I realized that I had just had cortisone shots in my knee just a couple days before both acute attacks. After some research I found that cortisone has a side effect of pancreatitis in some people. It will be hard to prove that this is what caused my acute attacks but it seems likely. After my second attack the pain never went away. It just would get worse with eating and physical activity. After several trips to specialists and getting a series of tests done it was determined that I have Hereditary Pancreatitis which has turned into Chronic Pancreatitis. I have compared it to being on a roller coaster that never stops and has the ups and downs with the pain and other issues that go along with it. This has greatly changed my life and I struggle with doing daily chores and working. I’ve been a firefighter for almost 30 years and it has been a struggle for me to keep doing my job to the standards that need done. I am determined to try and keep going the best I can. I also do what I can to help others as they struggle with CP. I have taken on the role of Chair for the Ohio Chapter NPF. I feel it will be a challenge and an honor to take this role as we work to help find a treatment and cure.
THE “ANGRY ORGAN”
An attack of Acute Necrotizing Pancreatitis due to Hypertriglyceridemia (Type I Hyperlipoproteinemia or Chylomicronemia)
In Honor of Dr. Singh, Dr. Mackary, Dr. Law, Christi Welsh, at Johns Hopkins University Hospital and Dr. Seoudi, Dr. Griffin, Dr. Machetti and the entire Trauma team at Inova Fairfax Hospital and each and every nurse that cared for me November 14th, 2013.
I woke up early in the morning with severe pain in my abdomen. It felt like a 300lb person was sitting on top of my stomach. I sat up in bed and jetted to the bathroom to puke almost 11 times, mostly gagging up bile. I was curling up into a fetal position in my bed holding my stomach when I decided to call my mother. By this time it was later in the morning just a little past when most people eat breakfast and are getting ready for work. I told my mom that my pain was the most excruciating pain I’ve ever felt in my life. One hour later I felt the pain getting deeper and I sat up again thinking I would run to the bathroom for another painful episode, but this time I sat up so fast and never made it to the bathroom. I had puked all over myself and it was seeping into my bed sheets. My mom has always been the over protective type but just like any other mother on earth, when her child gets sick she starts to demand visits to the doctors etc. At this point, I told her that I wanted to wait and to see if the pain would subside and I had thought maybe just maybe it was some weird cramping thing I had going on. She held her tongue and agreed. She told me that she was going to call every hour to check in on me as well.
So she continued to call for the next few hours or until about 2 o’clock. That’s when one of my good friends texted and wanted to see if I could meet for a rendez-vous at our local hot spot to enjoy our love for margaritas and cheesy dip. I texted her back that I may need her to take me to the ER instead because I threw up a lot this morning and that my stomach hurt so bad. Being the good friend that she is, she texted me back “Ok, I’m leaving the gym now to pick you up. There is no reason you should wait and it sounds like you may have appendicitis”! I thought about my morning and counted the number of times my mother had called since I told her of my pain, swallowed my hesitation and agreed. It was about 4 o’clock when my friend called to tell me she was outside of my condo building. She gathered my things into a little overnight bag and packed up my purse. She said to me ‘you never know if you’ll be there overnight or not so it’s good to be prepared’, then helped me down my condominium’s stairs and watched carefully as I bent over holding my stomach and into her car. We drove about 50 feet and I started to complain again about my stomach. As we drove over a speed bump, I complained even more. I walked through the ER doors and I thought I’ve never been this sick before that I forgot to put make- up on! Then the sharp pain shot up my back again and around to my abdomen. I was standing at the front desk counter as my friend came up behind me, she told the receptionist my name and for me to go sit down and just to give her the paperwork to fill out. She then walked toward the seat that I had saved for her and plummeted down next to me. She asked questions like ‘What is your social? What is your middle name’? I answered her questions as she filled in the overwhelming emergency room patient form. Ten minutes later my name was called out.
That was the middle of November. I was 29, active, ate well and overall a seemingly healthy female. Today is the middle of June and it has been a very, very long and overwhelming 8 1/2 months since my friend picked me up that one afternoon. I am writing this now, which is one day after my follow-up Esophagogastroduodenoscopy at Johns Hopkins. This procedure confirmed no ulcers were present in my stomach and duodenum, but more importantly no more Necrotizing Acute Pancreatitis in my abdomen! If you would like to hear my story please click here and help support me through the National Pancreas Foundation! All proceeds go to research for Pancreatic Diseases and Cancer, so hopefully …in the near future…no one will ever have to experience what I went through again.
Alexandra’s Story of Courage
I’m a member of the Young Professionals Committee for the Western PA chapter of the NPF. I’d like to share my story of why I support the National Pancreas Foundation. Well, it started a little over 3 years ago when I was 24 and living in Dallas. I had recently moved from LA, where I was working in film production. Working in film and becoming a producer had been my goal since high school. My dream took me to LA after college, then in July 2010 to Dallas, where I was working for the Dallas Film Society as the Special Events Manager. For a few months leading up to March of 2011, I hadn’t been feeling myself – I was having digestive problems, a sharp, searing pain in my lower left abdomen, and I had lost 10 pounds inexplicably. Several doctors and specialists told me it was just stress, but after months of the same symptoms, my mother broke down in hysteric tears and begged me to see a doctor, so I agreed to get checked out by my GI. When she heard my symptoms, she agreed it was probably the stress of moving to a new city, but decided to do a CT, just in case, since I’d lost 10 pounds in a month for no reason. When the CT found a mass in my pancreas, my doctors assumed it was just a fluid-filled cyst, and scheduled an endoscopy to find out for sure. They told me not to worry about it.
On March 8th, 2011, I was sitting at one of our conference rooms at the office when I received a phone call from my gastroenterologist’s office to give me the results of the endoscopy and biopsy I’d had two weeks prior. So, I was sitting in the office working late on this Tuesday night, when a nurse from my GI’s office called to tell me that my GI was at a conference and wouldn’t be able to speak to me for a week, but she’d asked the nurse to pass along my test results since I’d already been waiting for 2 weeks to get them back. I’ll never forget grabbing my pen to write down the results as the nurse said to me, “the mass on the tail of your pancreas is a solid pseudo-papillary tumor with cancerous tissue…” I remember writing it down word for word, and tracing over & over the word “cancerous” as we talked….I remember asking the nurse, “what does that mean, does that mean I actually have cancer?” An avid Grey’s Anatomy fan, I knew the youngest person ever diagnosed with pancreatic cancer was 28, so I said to her “this just can’t be right, I’m only 24, I can’t be the youngest person in the world with pancreatic cancer.” I’ll never forget how uncomfortable she was; answering these questions my doctor should have been answering, and telling me that she didn’t know what my diagnosis meant but that if there’s cancerous tissue, then I must have pancreatic cancer.
Wendy’s Story of Courage
My story began in July 1999 when I was struck with this excruciating pain on my upper abdomen. I went to the emergency room and after the lab test came back, I was told I had acute pancreatitis. I had no clue what this was but one of the doctors told me the most common cause was from excessive drinking. I knew this couldn’t be what was causing my pain because I hardly drank. So I thought this was a fluke and would never have this happen again. Boy was I ever wrong!! Over the next several years I would end up back in the emergency room with more attacks of pancreatitis and each time the doctors would ask about my drinking history. I would have several tests done after each episode. In 2006 someone recommended I meet with Dr. Timothy Gardner who was specializing in with pancreatitis. I had high hopes he would have the answers. Unfortunately, he too was not sure why I was having recurrent chronic pancreatitis. With all the tests ( CT scans, blood tests, and EUS) no answers. In 2009 I had a really bad attack I ended up losing over 30 pounds because I wasn’t able to eat or drink anything without pain. Dr. Gardner said I needed a feeding tube because my weight was below 110 and requested I also meet with a surgeon who specialized in Whipple procedures for patients with pancreatitis. I did and had my first surgery(whipple) in Feb 2010. Dr. Gardner gave me the news that I had IPMN (Intraductual Papillary Mucinous Neoplasm) the words pre-cancer cells is what he told me. He said they were pretty confident they got all the margins and I would be fine. But in April 2010, the pancreatitis came back and I was told I needed the remaining pancreas removed. 2nd surgery was in July 2010. Now I was an insulin dependent diabetic and unable to control my blood sugars. For several months I would suffer from very low sugars do my doctors suggested I meet with the transplant team to see if I was a candidate for a pancreas transplant. I met with the team in Feb 2011 and had my transplant in Dec that same year. Since my diagnosis, I have wanted to give back by helping others stricken with the same disease. I met Jane Holt in 2012 and spoke with Patter about possibly becoming a member of the National Pancreas Foundation. I am honored to be such a member. I have shared my story with others and helped others who had to have surgeries due to pancreatitis. I am glad I am able to share my story if it helps others.
Jane’s Story of Courage
It was early January, 1988. I had been feeling fine all day long. We had dinner at home and went to bed as usual. In the middle of the night I woke up and thought my insides were exploding. There is no other way to explain the pain. It was the most intense pain I had ever experienced. I laid in bed trying to figure out what was going on. Finally I woke my husband up and said I needed to go to the hospital. Something had to be terribly wrong. At the time we had four young children so I took myself to the local emergency room. It was about 1 am. Everyone was wonderful to me in the emergency room. They did the normal blood tests and finally did an ultrasound. I had stones in my gall bladder. The physicians decided they would give me pain med and send me home. They arranged an appointment with a surgeon in the next few days. I assume they checked my amylase and lipase but didn’t know enough then to ask.
Ten days later my gall bladder was removed. My surgeon came to visit me in the hospital the next day. The anesthesia had worn off by then and the first thing I told him was that the pain I had before the surgery had not gone away. It was back to the drawing board. I consider myself very lucky. I live in the Boston area. There are many wonderful physicians in this area with several teaching hospitals. It took me six months to find my way to one of these teaching hospitals but as soon as I did I very quickly had a diagnosis: Chronic pancreatitis. I had pancreas divisum . Pancreas divisum is a defect in the ducts to the pancreas. It was suggested I have surgery to repair this defect. By the end of October, 1988 I was undergoing another major surgery.
Don’t forget that I had four young children at home. I had twin girls who were 10, a son 7 and a son 5 . They were and are still my life! I refused to let my medical condition get in the way of my enjoying them. I have a very supportive husband. His mother and father always came to help me and spend time with the children. I also had a wonderful woman, Joana, who was always there.
The surgery seemed to help for a little while but within six months the pain came back. My doctor, Dr. Douglas Pleskow, was incredibly supportive. He would bring my medical information with him to medical meetings, discussing my case with colleagues, hoping to find something that he could do to help. I did what many patients do or think of doing. With Dr. Pleskow’s support I went everywhere for second opinions. One doctor told me once that I had chronic pancreatitis and I needed to just grin and bear it. At the time I found this comment very disturbing but this doctor was really correct.
I now have had CP for over twenty years. The most important thing for me was coming to terms with the pain. I needed to realize that there is no magic pill. There is nothing that is going to eliminate my pain completely. There are things I can do to make it more tolerable but it is not going to go away. I am lucky that this seems to work for me. I still have flares and end up in the hospital but over the years I have still been able to enjoy my children and now my grandchildren. This may sound crazy but it helps me to know that I have experienced the greatest pain possible. I understand what is causing this pain. I think the worst thing about pain is the fear of pain. With the pancreas pain I think I have eliminated that fear.
Patter’s Story of Courage
I had the honor of marrying into the large and welcoming Birsic family of 9 children, when I married Tom Birsic in 1978.Coming from a small family; it took me awhile to understand the dynamics of a larger family and the various interactions amongst the siblings on a number of levels. Over the years, I became very close to my sister-in-law, Joan Birsic Dawson- we were about the same age and our daughters were close in age resulting in Joan and I enrolling the little girls in everything from gymnastics to ballet, and taking trips to the family farm and the beach together. In 1996 at the age of 38, Joan went into the hospital for routine surgery to remove some kidney stones. Instead the surgeon delivered the heart breaking news that Joan had pancreatic cancer, which was non-resectable. She had 3 – 6 months to live and her daughters were 3 and 5 years of age. To the day I die, I will never forget the surgeon’s cold delivery of that diagnosis and the feeling we were all going down some horrible hole of no control or hope. Life was whirling out of control.
I remember going home to look up on the internet what a pancreas is, since I didn’t even know I had one. My second search was for pancreatic cancer at the American Cancer Society website and the news was all grim. Fortunately, the large Birsic family is a wealth of resourceful and smart siblings, including Joan’s brother, Dr. William Birsic, a general surgeon. Due to Bill’s determination and love of Joan, he was unwilling to take the fight lying down. He researched various possibilities and after several visits to the National Institutes of Health, Joan was accepted into a clinical trial for pancreatic cancer. After a brutal 6 weeks of the clinical trial and living in an apartment in Bethesda, away from her adorable daughters, Joan’s tumor shrunk. After meeting with the pancreas surgeons at Johns Hopkins Hospital in Baltimore, Joan was accepted as a candidate for the Whipple surgical procedure. We were told that having the surgery would give her on average another 3-5 years to watch her daughters grow and share as much time as she could with her family, which she loved so very much.
She was so strong through the entire ordeal, making all of us put on a strong front as best we could. However, for a group of talented, smart, proactive people we felt hopeless and powerless. We were devastated and we were mad. How could this happen? There was so little information available in 1996…even on the “Information Highway.” What happened to people who didn’t have a brother who was a researcher, who had a big family support system like Joan had? There had to be something we could do to make it better for the next family who received this horrible diagnosis. It was decided to start either a Foundation or a Fund in Joan’s name and I started to pursue the legal aspects of that decision.
As fate would have it, Tom and I were invited by one of Tom’s law firm partners, Tom Holt, to a Boston College/Notre Dame football game. It was the first time I met Jane Holt, Tom’s wife, and we chatted throughout the game, becoming acquainted with the typical exchange of children, hobbies, etc. Jane shared with me her struggle with chronic pancreatitis and then I told her about Joan’s battle with pancreatic cancer. We shared our frustration on the lack of knowledge about pancreas disease by the public and medical communities equally. After several communications via email and telephone, Jane and I committed to start a foundation beginning with the legal issues, funding and the development of a Board of Directors.
The Whipple procedure only extended Joan’s life approximately 18 months, dying after just turning 40, with Jennifer only 6 years old and Karen, barely 4. Joan died before the National Pancreas Foundation received its official non-profit status, but she inspires me every day to fight, collaborate, lobby, raise funds, seek new treatments and cures, in order to give people hope. I am also inspired by so many others who are the faces of courage in NPF’s Courage Network – all of the clinicians and researchers who dedicate their careers to finding answers to so many unknowns in the pancreas world; the volunteers who enthusiastically give of their time and talent to raise funds and support programs in their local areas; the companies and private individuals who are so generous with their checkbooks and most importantly the patients and their families who battle every day with pancreas disease. I am honored to stand shoulder to shoulder with them to increase awareness, educate, heal and give hope.
I had no idea what it meant over a decade ago when we agreed that we had to do “something” and that something is now the National Pancreas Foundation. It’s been many years since that football game. The National Pancreas Foundation continues to do lots of important things, but I believe of all the things we do, one of the most important is that we are HERE! And patients, family members, caregivers and the medical community have somewhere to go for a sense of hope and reliable information.
Ray’s Story of Courage
I had my first symptoms on 9/11/01. I felt this pain in my stomach area. I thought it was caused by the sight of planes crashing into the WTC. Eventually the pain became so intense I had to leave work and go to my family doctor. He discovered bile in my urine, and gave me the name of a surgeon to see immediately. I made the appointment for the following week. Two nights later I turned yellow..had extreme pain and was admitted for pancreatitis. Everything was like a blur. I had the Whipple done a couple weeks later. I had Stage 3 Pancreatic cancer, 2cm tumor, positive nodes.
The Whipple was a massive 10 and a half hour long surgery. It took me a year to recuperate enough to go back to work for the year I needed to get my 15 years in. I went out on SSD after that year. I went from 186 pounds to a low of 114 pounds. I’m now 122lbs. It has not been easy. I’ve had my share of good times, but also have battled pain and depression. I am an 11 year survivor. It is a life changing cancer. You never return to normal.
Kelly’s Story of Courage
I had my first acute attack when I was only 15, it was minor in comparison to what my future held. Only a weeks stay in the hospital and a few life style changes and I was “as good as new.” Five years later I was finally going to college at the school of my dreams in Denver, Co, and when I came home for the summer I was in for a surprise. August, 2007 I was hospitalized with numbers over 9,000. I ended up with a feeding tube for four months and a hospital stay of almost 2. Over the past four years I have averaged about 4 attacks a year if not more. I am now diabetic, I have endometriosis, reactive arthritis, my pancreas is beginning to calcify, and I have chronic pain and nausea. I have under gone countless procedures and treatments only for the doctors to come up empty handed. 650 words isn’t even close to tell my whole story, but I’m still trying to go to school, I still try to go to work, and I always go through out my day with a smile and a positive outlook.
Christy’s Story of Courage
My life was just starting to look like what I had imagined… enjoying being a wife, raising three amazing children, and possibly adopting more. Little did I know that my life would begin a downward spiral, leading me and my family through a lesson on personal suffering, and showing us just how thin the line is between life and death.
Around the age of 30, I began having chronic stomach problems and abdominal pain. Although I hardly ever went to the doctor, I knew I needed help. I saw numerous GI’s who ran many tests for a couple of years, until in 2005 I had my gallbladder removed. Unfortunately, within weeks of surgery I had an extremely severe attack of pain that took my breath away. It felt like I was literally being stabbed. My husband called an ambulance – but the doctors found nothing. Every few months or so, without warning, the excruciating pain would hit again.
I was sent to MUSC at the very end of December 2006. During an ERCP, they discovered that I had a congenital anomaly of the pancreas called Pancreatic Divisum. The pancreas was left “divided” into two sections when formed from birth. They also found that I had Sphincter of Oddi Dysfunction. The sphincter did not work properly, causing pancreatic juices to back up into the pancreas and eat away the tissue. I had my first sphincterotomy in hopes the pancreas could drain more efficiently.
I was better for nearly two years! We thought that was the end of my medical troubles. Then, without warning, I began to experience pain again. I went back to MUSC in January of 2009 where they found that the duct had nearly closed. After another sphincterotomy, relief only lasted months, and to make a long story short, the cycle continued for a total of four sphincterotomies. I lost so much weight and had a feeding tube implanted into my abdomen. I continued to experience pain from my smoldering pancreas, but I was in denial – not accepting the diagnosis of chronic pancreatitis – not accepting that this was not just going to get better.
I researched tons of information about pancreatic issues and read about a groundbreaking surgery called the Total Pancreatectomy and Islet Auto Transplant. Doctors would remove the pancreas and transplant islet cells into the liver. I scheduled a consultation with Dr. Sutherland in MN who first performed this surgery. In the meantime, my doctor at MUSC informed me that they, too, had just started doing this rare surgery. He set up an appointment for me to meet with their pancreatic surgeon. After both consultations, it was concluded that the enormous surgery would be my only way “out”. It would mean a long hospital stay, many complications, a stay in ICU, a large incision and many tubes to wean off of. It would be a long year of recovery. BUT, this would mean no more attacks of pancreatitis, a condition that causes more and more damage – even a chance of death.
On January 24th, 2011, I became MUSC’s 49th TP/IAT patient. I had lots of bleeding, needed blood transfusions and platelets, had some breathing problems, and of course was in lots of pain, but slowly I progressed. It’s now only three months out, and I am still on the long road to recovery. Although I continue to struggle with digestive issues and work daily on the puzzle of surgically-induced diabetes, I am eating and not in pain. I am happy to have the chance of one day living life fully again.
On the darkest days when you cannot imagine one more breath to flow through your broken body, it can seem that God has abandoned you. I can only say that I am here because of God’s will, and I can only hope in the everlasting life of Heaven, where suffering will be no more.