Pip's international travel for life changing major transplant surgery TP-IAT.

In the past 5 years I have been given 5 different Diagnosis all relating to my pancreas,

I need to stop the deterioration and pain that has put my life on hold, unable to work, socialise, exercise and even contributing to house work.

I just want to be me again, the happy adventurous outgoing bubbly woman I use to be,

It's the small things in life that matter…

My husband wants to take me out to dinner…

My dogs want to walk on the beach…

My family wants their once so loud and vibrant daughter and sister, wife and stepmom….

my friends want me to smile and be able to give me tight hugs, go out and just have fun together

I want to return to work, life and all the special moments that make life count.

Most of all, we all want me to be happy and outgoing as I have been for majority of my life.

Please can you help me by donating the equivalent of a cup of coffee or two, towards the cost of my up coming travel to Australia, for a surgery that will change my life and reduce the risks of any future diseases or deterioration of my pancreas, including but not limited to necrosis and or cancer.

Craig - my support person and devoted husband- and I will have to be in Australia for about 6-8 weeks, if surgery goes to plan, it could be longer.

In order for me to have the surgery I require a support person, while the cost of the surgery and all hospital costs are covered, but the travel, accommodation, and day to day costs are not covered, as well as keeping our lives rolling on in New Zealand until we return home, neither of us will have an income and our beloved pets required kennelling and catteries, we are unable to get a house sitter as we are currently living in a half renovated house.

So whats putting my life on hold?

For the past 5 years I have received 5 diagnosis all relating to my pancreas…

I have been dealing with a chronic pain caused by multiple issues which are very limiting both mentally and physically, coupled with crippling nausea and vomiting, embarrassing facial flushing which worsened with the level of pain, severe pain in my back, abdominal bloating, violent dizzy spells, brain fog, anxiety, bowel cramping, migraines and weight loss of 16 kg in the first few months.

Triggers to the pain include but are not limited too, some very basic tasks such as eating, drinking, stress and movement, initially it was fatty food, complex carbs: such as white potato, white bread and white pasta, fizzy drink, movement or exercise, smoking and alcohol.

After I changed my diet and stopped drinking alcohol, the pancreatitis turned to chronic pancreatitis all food reacts causing pain, nausea constantly and daily including the above mentioned symptoms. As this disease progressed so did the triggers, I stopped smoking but still any meals or snack sets off my pain and symptoms now.

I was born with a rare congenital disorder called an annular pancreas, this means that when the pancreas is developing instead of forming a leaf shaped organ that sits below the stomach, my pancreas grew around the second part of the duodenum. The duodenum is basically the connector of the stomach and bowel. Having the duodenum fully incapsulated in pancreatic tissue constricts the flow of food into the bowels either creating a blockage or impaired flow of food, this can also cause pancreatitis.

I have had every test and procedure possible and available in New Zealand, but I am now at the point where the removal of the pancreas is my last resort.

There is a procedure done in Sydney Australia called a total pancrectotomy with islet autotransplantation also known as TP-IAT: Basically the removal of all the pancreatic tissue, then extraction of the islet cells from the pancreatic tissue and transplanting them into the liver.

The liver then functions as the liver and pancreas hopefully this will diminish the amount of insulin required post operatively or best case scenario reducing the chance of having diabetes at all-diabetes type 1-a once definite side effect of removal of pancreas.

I had been waiting for nearly 1 year to hear of the next steps in my treatment plan, we had saved a large chunk of the money we need for this trip, however when Covid 19 washed crossed the earth we had to use some of the savings to survive as many people have done.

Now 2 years later I am asking all my friends, family, colleges and whom ever else reads this to please donate to me for this medicinal - surgical travel, that will free me of pain and horrific symptoms.

The combination of a 5 different diagnosis meant that there was no one simple treatment to help my pain levels:

1. acute and chronic pancreatitis - CP - inflammation of the pancreas causing permanent damage

2. Dilated bile ducts and dilated pancreatic duct : causes irregular flow of enzymes in these ducts

3. Cholecystitis - Gallbladder filled with heaps of tiny gallstones

4. Sphincter of Oddi dysfunctions - SODS - the sphincter does not open and close when required

5. Exocrine Pancreatic insufficiency - EPI - you body does not break down the food you eat and nor do you absorb the nutrients required

For those of you whom wish to know a little more here is a brief history, where this all begin:

In march 2017, 5 months after the pain began, the doctors discovered that my bile ducts, which connect the liver to the pancreas, were heavily dilated instead of being 3 mm which they were 5 mm and they continued to dilate to 12 mm, the tests showed that there was a small cyst in the bile duct, my gallbladder was filled with heaps of tiny stones and scarring on the outside of the pancreas, showing that I had early stage chronic pancreatitis.

I had a procedure to dredge the common bile duct to remove the cyst and any stones stuck in the duct from the gallbladder. My gallbladder was removed and a stent was placed in the ducts. I also had a procedure twice called a sphincterotomy on the sphincter of oddi - cutting the sphincter to allow correct drainage of the ducts in the pancreas, this is when I was diagnosed with Sphincter of Oddi sphincterotomy dysfunction or SODS.

A sphincter of oddi dysfunction means that the sphincter does not contract and relax at the correct time, causing a blockage in bile flow thus causing biliary pain and blockages in the pancreatic duct causing pancreatitis.

Unfortunately this did not give me the resolution to my pain and nausea.

After another barrage of test, in December 2018, I had major surgery which we were hopeful it would help my symptoms, however I was made aware that this might not be the case, prior to the surgery, due to the complexity of multiple issues.

I had a pancreaticojejunostomy and hepaticojejunostomy done at the same time,

The pancreaticojejunostomy also known as puestow procedure, this means that the pancreas was cut in a longitudinal direction and butterflied to an opening in the bowel, this was supposed to increase and allow for free flowing of all the digestive enzymes out of the pancreas, these digestive enzymes aid in digesting food.

At the same time a hepaticojejunostomy also known as Roux en Y - this is creating a connection from the liver to the bowel to allow the digestive juices from the liver to go directly into the bowel.

This would have worked if we were dealing with one issue and not multiple.

In August 2019 after another barrage of tests, we discovered that the fluids were not draining correctly out of the pancreas both in the head and tail and the tests that stimulates the enzymes still caused pain and nausea.

My specialist suggested that there is high possibility I might need to go to Sydney Australia from New Zealand - where I currently live - to have a surgery called TP-IAT : Total pancreatectomy with islet autotransplantation.

My specialist has worked very hard to help me, however when COVID19 began in January 2020, the process came to a complete stop, unfortunately this has left me doing my best to cope with no definitive plan, until 27 October 2020 I had a phone consult with one of the surgeons from Australia who arranged a few more tests for me. During this time dietitian diagnosed me with EPI - exocrine pancreatic insufficiency: this means that the pancreas is not producing the correct amounts of enzymes to digest and absorb food and nutrients. I am now taking digestive enzymes to assist my body to absorb nutrients.

On 19 February 2021 the surgical and medical teams decided the best plan for my future, they all agree I would benefit from the suggested surgery in Sydney, the TP-IAT, in May 2021.

Thank you for your time and consideration I really appreciate all the love and support I have received.