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HOLY COW!

Monday, October 31, 2011

Baby Cow!
Toddler Cow!
Even though this is my "pancreas blog" I don't want to be like the news. The news stinks! They tell you all the bad things happening in the world and scare you right before bed. This is why when I am home alone I stick to Kim Kardashian and Chelsea Lately. I can't handle the truth:-) So anyways, I wanted to share my awesome night! Tonight was Halloween and I had a blast with my best friend, her hubby and my favorite two babies. They dressed as lil cows! So much fun!

TP-AIT Surgery

Amongst the many other stupid things people have said to me along the way, one has been “why don’t you just get your pancreas out”. Unfortunately, the pancreas is a vital organ and it is not like taking out an appendix. The pancreas creates insulin and digestive enzymes. Both are important for survival. Removing it involves becoming a diabetic, going through a 10-14 hour surgery, staples up my entire stomach area, a 30 day hospital stay, and the 40% risk of complications and need for more surgeries.  However, the total pancreatectomy has been done with auto-islet cell transplants. The success rate has been good, but the long term research is not there. The surgery was first performed in the world in 1970 at the University of Minnesota but Dr. Sutherland. It worked and the lady lived another 6 years (I am not sure of her history or condition at the time of surgery). The idea is the pancreas is removed and the islet cells (insulin producing) are then take out of the pancreas and placed in your liver where they make a new home. If it was as easy as I am making it sound I would have had this done already. However, I am now praying that I get approved for this surgery at both the UofA medical center and the UofMN medical center. I would like to have options.
November 18th is my first appointment with the UMC in Tucson! I am so excited. I am also working on getting my first appointment with U of MN medical center. I can’t wait to hear what Tucson has to say. So far, an hour on the phone with someone who understands the severe pain was all I needed to be excited! I will be tested for three days at UMC where I will have a battery of different tests to check every possible thing! I can’t wait to get a second opinion and a better look at what is going on with the cranky panky! The talk of surgery and the research I am putting into this has been the scariest thing I have ever done in my life. Ever. I mean ever ever. I can not even express in words how scared I am for the future and for the surgery. Even with that being said, I pray every day that I get approved for the surgery and it truly becomes my option. After making around 30 trips to the hospital and ER in the past few years, I feel this is my time to do it! I am ready! I want to reclaim the life I love and make it a good one! HOPEFUL tonight!

UMC- University of Arizona

UMC- University Medical Center, University of Arizona

JACKPOT! I hit the motherload of hope today! I was told by my family and support group that the UMC has an extensive chronic pancreatitis center and also has some world renowned surgeons doing TP-AIT. They were trained in Minnesota by THE DR. SUTHERLAND and I am excited. I called the number on the website and wa laaaa! I spoke to the most wonderful lady named Renee for about an HOUR! Yes, she took an hour to speak to me. She wanted to know my medical history from day one of pancreatitis. I told her about Mayo and the doctors “no hope” attitude and the “afraid of pain meds” mentality. She said it made her so mad to hear but she said she understood why there is a huge lack of knowledge. She told me 80,000 people in the US have chronic pancreatitis. There are around 313,000,000 living in the US. She actually helped me have more tolerance for the Mayo even though I was fuming! She told me that she felt sorry for me because I was 25 and probably even more misunderstood than some of the older patients. After giving her my entire medical history she said that based on what I have told her she thinks I will be asked to come in for a 3 day work up. Before this, I will be given a new GI doctor that works out of Phoenix. I can have him be my doctor even if I don’t end up doing the TP-AIT. WOO! She told me he will never miscalculate or judge my symptoms and that he has devoted his career to my disease! What a relief. I am just excited to get a new doctor who understands. She also told me that my pain is mismanaged. She explained that mismanaged pain can cause stress on your body and can physically exhaust a person. It is really bad for your health. She told me narcotics are addictive, but that patient comfort far surpasses fear of addiction. Hopefully, if I can get the panaceas out I won’t need to worry about long term narcotic use! This woman understood the agony of my back and stomach. She is referring me to a pain clinic to get my pain under control and my first appointment with UMC is Nov. 18th. What a blessing. 

Doctors who Understand?? Where art thou??

The Quest for Someone who Understands!
This statement above is my mantra when looking for GI doctors. I didn’t listen to people in my support group when speaking about doctors because I thought Mayo had such a good reputation and had to be able to help me. I was right, they do have a good rep, and for good reason. However, they are not on the leader board for pancreatic diseases at all. Unfortunately, they are not even in the top 5. I did not know this until I had already been seen in Minnesota at the Mayo and had started being seen here in Arizona. 
My last appointment with my doctor at Mayo proved to be a really upsetting one! I went in after being in the ER last week for severe CP pain. My lipase didn’t rise because it has started to stay stable even during attacks. All of the literature about CP supports this because it is said that after many attacks the lipase doesn’t need to rise to be having an attack. I also had another MRCP which didn’t show any changes to the pancreas. My GI doctor called me into his office and said, “I don’t mean to sound insensitive, but there is nothing else I can do”. My mom sat right there as he said it. I asked him about the pancreas transplant or the TP-AIT (Where they take out your pancreas and give you a transplant of your own insulin producing cells to put in your liver). He said, “to be honest, I am not familiar with this.” Hmmm. Okay. Time to move on. 
Later that day I called and asked if I could switch doctors and also stated that I was out of Percocet. He said he was afraid to give me pain meds and that I should go to the ER if I was in pain! If that were the case, well then the ER would see me every day!  They told me that the Mayo has a policy about the switch. You can only switch doctors if your current doctor agrees to be removed from your case! WHAT! So...you can only be fired if you agree to being fired. And guess what??? He did NOT agree to me going to someone else. EGO TRIP! If you are in the process of becoming a doc (Vinnie) promise me you will be a good one:-) 

November: Pancreas Awareness Month

Saturday, October 29, 2011

I am getting ready for pancreas awareness month! I ordered my hat at www.pancan.org and you can too:-)

Perspective

Sunday, October 23, 2011


My illness has changed the way I think, but it has not changed me. Perspective, I believe, is created based on life experiences. Some go through the loss of a newborn baby, infertility,  the loss of a spouse, falling in love, marriage, and for some maybe it is betrayal or divorce. Whatever it may be, it changes your perspective. It makes you less selfish, more selfish, happier, sadder, excited, more understanding. For me CP has made me less judgmental. I like to think of how I would feel in someone else’s shoes. I try to leave the judging to the man upstairs, because you don’t know what it is like to be someone else. Someone else may have an abortion, may cheat, marry the wrong man, want a baby, hate a person, be a drug addict...whatever it may be I am not them and I don’t know how it feels. I think this has come from feeling judged. I feel like the “alcohol abuse” stigma that is associated with CP is so hurtful, even when I google CP and it is the first thing I see. Such a bummer, one I want to change, and will work all my life to change. Oh yea, you heard me, all my life. 

Support Group


I didn’t know my mom was sitting up at night worrying about this too. One night, in the middle of the night she was online researching and she found a support group. It was a Yahoo group and she wrote a lady who had her pancreas out. The lady gave my mom her phone number and told her to have me call her. After holding on to the number for a few months and thinking it would be weird to call I finally called. I had no idea you could live without a pancreas! 95% of people do not know this, and those people include doctors! She was a teacher too and had her pancreas out by Dr. Sutherland and the University of Minnesota. This was the first time I had heard of Dr. Sutherland, but would not be the last. She was doing great and had islet cells transplanted into her liver to lower her risk of becoming a brittle diabetic. It was working and two years out she was loving life. 
I’m not sure why I didn’t think to look on Facebook for a group but one night I did.  It was like hitting the jackpot! I found a wonderful group of people all suffering from the same thing. Many had TP-AIT, total pancreatectomy with Auto-Islet Cell Transplant. They were alive and living life pain free without a pancreas. Many were diabetic, but diabetes is at least manageable. Facebook has saved my sanity, I bet Mark Zuckerberg never thought it would do that! Facebook has brought me to many people who know my pain, have experienced my frustrations, and understand what it is like to have a disease that is misunderstood by even those in the medical field. In my group no one is from Arizona. I remember feeling like I was all alone. I rarely hear of anyone knowing someone who had CP. Facebook has changed that for me. My friends from my group exchange phone numbers, offer condos/houses to stay at while getting treatment, offer help at the hospital, and offer so much support. Most of all, my group has offered me HOPE

CP Management


Tricky word, I have come to realize through my struggle. Doctors have given me Percocet, Oxycodone, Morphine and Dilauded. Unfortunately, over the counter pain medicines do not even put a dent in this type of pain. I wish they did! Doctors will tell you funny things about pain medicine. They are addictive, no doubt about that, and they are used incorrectly by many people. There is a difference between being dependent on them and being addicted. However, my regular everyday doctor told me not long ago that taking Percocet even three times a year is too much. He also told me I would die without a pancreas, so I am choosing to ignore him:-) What is the alternative? Deal with pain everyday? My specialists understand this pain and they know it requires strong pain killers. The most knowledgable doctors will tell you that pain must be managed. That is the problem with CP. I should add that to my list of “I knew”. I knew that people with CP often get addicted to pain medications. It is because there is no cure and the only treatment plan is to take pain medicine! 

Pain

This girl is tired of the BUM!

What does chronic pancreatitis feel like?
Pancreatitis pain for me can best be described as someone holding on as tight as they can to the pancreas with their fist and not letting go. The pain radiates to the back and feels the same there. I watched a news segment on a little boy who had TP-AIT. He told the newscaster it felt like wrestler guys punching him in the stomach. Very cute way to put it! Yes, it does and also like you are bruised in the ribs. Laying flat is not possible because that makes the bruising feel worse. Curling up in a ball doesn’t help, heating packs offer little relief, hot baths help in the moment...Eventually when all else has failed me I go to the ER. My GI doctor once told me that CP feels a lot like pancreatic cancer. It presents itself with the same symptoms because the pancreas is slowly dying.

Genetics and CP


While I was at the Mayo Clinic in Arizona, where I am now seen, I had a chance to meet with a geneticist, Katherine Hunt. She was the cutest little lady with the sweetest voice and heartfelt manner. I loved her! She helped me understand more about genes. She drew out my entire family and went through the history of each family member. Today, there are three known and identified genes that can cause CP. Katherine believes there are over 30 unidentified mutations that can cause CP. Today we have three. They are CFTR mutation, SPINK-1 mutation, and Heredity (PRSS1). I am waiting on the results of the three now. During a visit with my GI doctor at Mayo, he mentioned the genetic mutations that can cause CP. He said there were two of them and he was trying to recall the names. I blurted out these three and he said “Oh yea, you are right, there are three” and then he looked my parents and said “You have a very intelligent daughter”. Thanks Dr. Decker, I’ll take it:-) The CFTR mutation is the cystic fibrosis gene. If I have that gene it just means I am a carrier for cystic fibrosis. Many people are and never find out. It will only affect you if you marry someone else who is also a carrier. In that case one of your children could have cystic fibrosis. Knowing if you have a genetic mutation won’t help you in the treatment of CP. For a while I thought it was only going to affect my insurance (wrong, GINA law prohibits this). Now I know that it will help me in making my decisions about the future. Having a genetic mutation can make my risk of pancreatic cancer increase even more and can change the way I will have my future babies. No worries, I have googled SPINK-1 AND pregnancy along with CFTR AND pregnancy enough to know it is still perfectly possible! 

What Next?


After my last attack I was donezo. Even though that is not my choice, I was done. I decided to get in touch with The University of Minnesota. They are the best, pioneers of the pancreas, some of the experts this disease has to offer! They are my HOPE. The team at the U of MN is dedicated to helping people who have CP, pancreatic diseases, and pancreatic cancer, those who are suffering. They help people who are hopeless and sick. This is their specialty and they are the best in the nation. Dr. Sutherland, who pioneered the TP-AIT surgery, is at U of MN. Although he is retired from surgery now, he is still there researching and training. His doctors and team are doing TP-AIT’s more than anywhere in the nation. They are doing case studies, offering FDA approved new drugs, and most of all giving patients back a high quality of life. I do not know what they will say about me or if I will be a candidate for the surgery. To be honest, I don’t care. I am just so hopeful and excited to go there and meet these doctors. I am so excited for a second opinion and a closer look at what is happening to my pancreas. I want to know her progress and her appearance. I want to know what these doctors who see this daily think. What a blessing, what a thing to thank God for! I was given their contact information from my support group members. Within minutes of emailing these doctors I got a response. Not just a response from one, but from all of them! They can’t wait to meet me and want to see me. What a blessing! I have HOPE! I promised myself that no matter the outcome of my trip I will come home okay. Whatever they say will not break me or ruin my hope. I will be okay, because the soup will be different the next day. Day by day. Thank God. God is good. 

Thanking God, the Man Upstairs


I am a Catholic. Even though I am not a very good Catholic these days, I am a Catholic and I love being a Catholic. I am a Christian who believes that Jesus Christ died for my sins. I believe that Mary is the mother of Jesus and she is the mother who will help me. Mothers always give their children what they want (much love to my little Italian grandmother and my mom whom always shared this with me). Mary always listens to my silly wants and my important wants. I ask her to pray with me and speak to God every time I face a challenge with CP. I have learned to thank God more often for the good things in life. I hear people talk about “spiritual journeys” and I know mine is just beginning. I am not all the way where I want to be with this, and I am strengthening my faith every day. 
Today I thanked God for:
  • Blessing me with an amazing Mom, Dad, and Brother
  • Allowing me to get through my undergraduate degree without having CP
  • Helping me meet the most caring and compassionate real friends 
  • Allowing me to be in a finically stable family who can help me with medical bills and treatments
  • Allowing me to have fun in life
  • Giving me an outstanding weekend of health and bliss to stand beside a college friend at her wedding
  • Giving me good pain medications to keep me moving through life




My List of "I Knew's"


I already knew many things about CP. It seems I almost obsessed on the topic because it was often on my mind. When something is hurting, it is usually not far from your mind. I knew about the implications the CP diagnosis the moment the soft spoken doctor who handed me tissues as I cried delivered the news.
What I Knew:
I knew chronic pancreatitis was caused by scaring of the pancreas.
I knew chronic pancreatitis caused an often chronic pain in the upper abdomen and back.
I knew chronic pancreatitis requires its suffers to take daily enzymes with meals.
I knew chronic pancreatitis can cause diabetes over time.
I knew chronic pancreatitis does not heal.
I knew chronic pancreatitis has no cure.
I knew chronic pancreatitis gets worse over time.
I knew chronic pancreatitis increases its sufferers risk for pancreatic cancer. 

WOWZA! How do you keep being a fighter with those grim little facts above? You do, and I did:-) I learned to thank God for the good stuff! 

Knowledge is Power

I have always loved school
and research, thank God!
I am not afraid of reading a complicated medical journal with language that is foreign or hard to understand. I will figure it out and I won’t stop until I fully understand what it says. I can’t tell you how many times I have typed “chronic pancreatitis AND pregnancy” into Google. Nope, I am not pregnant or getting pregnant any time soon!  I am not married and am no where near married:-) I know I want babies one day though.  As crazy as it may sound, I LIKE knowing what is going on and I want to be prepared for things that will happen in the future. I want all of the facts, all of the research, and all of the stories I can possibly find. Knowledge is power, I know that now more than ever!

Being a Fighter

For all of us with cranky pankys!

I have had to miss a TON of life during this difficult (almost) three years. However, I pride myself in being a fighter. I don’t think I even knew that I was a “fighter” until a “pancreas friend” from my support group (yep, I love my fellow CP sufferers:-) pointed it out. She told me I was a fighter and so was she. I thought about what that meant a lot after that and this is what I came up with. Either I have way to much time on my hands (doubtful, I am a busy girl) or I am just a heavy thinker. 
Being a Fighter:
Being a fighter means that the first time I had pancreatitis I stayed positive and hopeful that it was a one time thing. I refused to let it change the direction of my life and carried on with my plans for the future. I was going to stay in San Diego and become a teacher. Being a fighter means that I could pull off student teaching, and get an A  (I am bragging!), all while suffering from a CP attack. After being in the hospital for five days, I returned to my first graders the next day and was so happy that I could. Being a fighter means begging the nurses and doctors to get me OUT of the hospital in time to go to my very first interview for a second grade teaching position. They all wished me luck as they took my IV's out and rushed my paperwork along. The nurses even bought me a good luck ladybug from the gift shop. I made it out one hour before, with just enough time to throw on my pretty dress, while my mom sat in her car in the parking lot because I could not drive! Being a fighter means I interviewed intelligently and got the job, even on Dilaudid. Being a fighter means I allowed myself a week long pity party after returning home from a devastating trip to the Mayo Clinic in Minnesota. Not long after I was my happy and smiling self. Being a fighter means refusing to except “I am sorry, there is nothing we can do for you” as an answer and seeking out the best doctors and medical treatment in the country. Most of all, being a fighter means that I make it through each hospitalization and ER visit and look forward to the next “soup of the day”. And for that I am very proud! 

My Story, How it all Began



Almost 3 years ago! I can tell I have
lost a ton of weight since then by this
photo!

Christen in San Diego-My Dad would
always snap photos and make
me upset! I am glad now.


















There is a part of me that you can’t see. The part that is deep inside me, behind my rib cage and stomach, the part that has been wreaking havoc on my life since February 15th, 2009, the part that causes me to have chronic pancreatitis. Many people have no idea what this is and I will admit I didn’t know either! The doctor told me that my pancreas and spleen were inflamed and that I would need to stay with them for a few days, which turned into weeks. I had never even been to the emergency room, not once in my life. My first attack brought me much anguish. When I went in I told them that the night before I had three cocktails, an admission I would come to regret. I was pegged as an “college student who participates in episodic binge drinking”-straight from my medical records, any lawyers want to help me get this out? I was a college GRADUATE who went back to school for a second time, thank you! Have no fear, I was told that if you don’t drink, eat a low fat diet, and take it easy you won’t have any problems again. Phew! 

Pancreatitis pain began again in October. Why was this happening again? What was causing this?  After all my MRCP’s, CT scans, and blood draws it was confirmed that the pancreas was inflamed. I started to become all too familiar with amylase and lipase levels, which are markers of pancreatitis in lab work. My lipase was the highest it had ever been, I believe in the 5,000 range when normal is somewhere near 150. Again, after a long hospital stay things returned to normal and I was back home. This time I was depressed and upset and I didn’t want to stay in San Diego anymore. I wanted to be near my parents, it was just easier. I moved home the following month and have yet to regret it. 
 After many more attacks and hospital stays I was given an EUS (endoscopic ultra sound) and an ERCP (endoscopic retrograde cholangio-pancreatography) where they went in and cut one of the ducts, called a sphincterotomy. The doctor who preformed this told me as I was coming out of surgery that he believed he had eliminated my cause of pancreatitis. A month later I had my gallbladder out and that surgeon told me that it was scarred and damaged. We all believed it was contributing to my pancreatitis too. Life was good. 

It was only a short time before my crazy pancreas was back at it again! I devoted so much of my time to figuring out where to go next. I used my prep periods at school to call hospitals and doctors, obtain medical records, and make plans. I didn’t realize how many times I had been in the hospital since I moved back to Arizona until I went to get my records. The woman at the records department asked me which records I wanted as I was admitted nine times! I sat in my car and cried after that. 

I found that the Mayo Clinic in Minnesota had a pancreas center and I wanted to go. After reviewing all of my records the Mayo decided they would see me. With that, my mom and I headed there. I was so eager, so excited, and so HOPEFUL!  After another EUS I learned my pancreas was no longer normal and my worst fears were coming true. My pancreas showed four of the markers for chronic pancreatitis and was forever scared. I was diagnosed with a chronic and progressive pancreatic disease with no cure and I was devastated. For a week I let that get me down, and then I got over it and began living life again. 

I began to seek out alternative treatments. I took antioxidants, had acupuncture, got massages, and ultimately stopped working as a second grade teacher. I went gluten free and dairy free (dairy had to be added back because I love cows). Each time I would get sick while doing all these things I would be so confused...I was doing everything right. I have finally come to terms with the fact that this is out of my control. I spoke with a friend the other day who lost a baby 13 days after birth. She told me that one thing she learned during all of that was that this life is not in our control. We cannot create the future or plan for anything. We can only do our best, but God will do the rest according to His plan. She was right and I am okay with that.

Soup of the Day, My Journey of Living with Chronic Pancreatitis

Soup of the Day
My Journey of Living with Chronic Pancreatitis

Soup of the day:
Everyday it’s different, sometimes my favorite and sometimes something I would never want to touch my lips. Split pea, chicken tortilla, vegetable, chicken noodle... That’s the beauty of just one day. One day at a time. A motto of sorts for many in life, my motto for sure. One day it’s gross and not edible, the next sweet and delicious. I can handle thinking that way. Otherwise, when it’s set in stone forever, well then, that’s too much to handle. Doctors words are set in stone, unforgiving, and often too much to handle. Whether its an outlook on management, or a future prognosis, it is unwavering and permanent. Nothing in life is permanent and chronic pancreatitis is the same, whether the doctors say it or not.

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