Patti's Pancreas

****Update June 2018**** Wow! Hard to believe six months have passed since Patti's surgery.  It's been a while since my last update so I wanted to let everyone know how things are going. First, thank you to everyone that has followed, donated, inquired and been a part of this GoFundMe and journey with us.  Your generosity and concern over the past months has been amazing. Since returning home,  Patti has been working hard to get better and back to a place of normalcy,  which has been a struggle. Although she has had some improvements, her doctors would have liked to have seen her doing better by this point. Her post surgery issues with her digestion still continue and her doctors are examining a multitude of things.  Several endoscopes, gastric emptying studies, an Upper GI, CAT scans, ultra sounds and an MRI have shown concerning results and her pain continues daily. Blood work has further revealed a new autoimmune issue of the liver, which is now enlarged and very worrisome, as well as a hiatal hernia and a narrowed pylorus, which need repairing. The gastroparesis that was present prior to and just after surgery has switched to rapid gastric emptying so Patti now deals with what is called dumping syndrome and is unable to absorb much of the nutrients her body needs and therefore has not been able to gain and sustain weight yet. The result of all of this has had a domino effect on Patti's body,  making treatment and recovery longer and more difficult than we first anticipated. Our biggest concern right now is Patti's liver and the extreme fluctuations in blood glucose numbers because both put added stress on her heart, putting her at greater risk for serious complications. Doctors are still  recommending the new insulin pump but that process has been a nightmare and 5 months later we are still trying to get approval and enough money to cover the cost. The pump, Medtronics 670G uses an algorithm that closely mimics the pancreas and cost is in the ballpark of $10k but it will be all important in getting Patti's #'s inline consistently. I can not stress enough how important getting her blood glucose numbers under control is so that her liver and heart are under less stress. Throughout this process we have also been dealing with her being initially denied disability benefits and have been waiting years for her appeal hearing, which required the hiring of a lawyer and additional stress during an already stressful time. Finally last week,  Patti went before a Judge and although things went well, it will be another 3 months before everything is finalized and who knows how much longer after that before any money is received. I have tried to be transparent on here so that our need can fully be understood. If anyone has any questions please ask and I'll do my best to answer. I urge everyone to please do all that you can to share Patti’s story so that we may continue to raise the money needed to provide her with the on-going medical care she requires. While Patti works hard to continue to get better and move forward from this, it is still a long road ahead. Please keep her in your thoughts and prayers. Thank you again to everyone for all your love, support and donations.  We greatly appreciate it! ------------------------------------------------------------------ I'm here today to ask for your help. As some of you may know, many of you don't, my wife of 20 years, Patti, has been struggling with her health. She was born with a PRSS1 genetic disorder of her pancreas. Hereditary Pancreatitis is a rare genetic condition characterized by inflammation of the pancreas, resulting in recurrent episodes of pancreatic attacks causing the pancreas to digest itself which leads to a chronic pain condition. At age 20, Patti had extensive surgery to correct some of this and has lived the past 25 years with no gallbladder, no spleen and only a portion of her pancreas. Over the years we have dealt with various issues as a result and are now faced with a new reality.                     Due to the progression of her condition, she was diagnosed as a Type 1 diabetic several years ago. She is on an insulin pump and takes enzymes to aid in digestion. Testing results now show extensive calcification and further dysfunction of her pancreas causing severe pain on a daily basis along with other various ailments stemming from her failing pancreas. We've been dealing with ongoing hospitalizations and a weekly barrage of Dr's visits this last year. The only remaining option is a complete removal of her pancreas and a long road to recovery.                    Surgeons at Jefferson University Hospital plan to remove her pancreas to eliminate her constant pain and the much higher risk of pancreatic cancer she also faces. Because her pancreas is so calcified and atrophied, she has no other options.                       The entire process will take several months from surgery to recovery. Needless to say this is all quite scary and very daunting from both a medical and a financial standpoint. She was forced to leave her beloved career in teaching and massage therapy, and has not been able to work the past 3 years; we are unsure when this may change. Medical insurance covers a lot of costs, but not everything, and a surgery of this magnitude will be in the $100's of thousands of dollars when all is said and done. This has already created a major financial hardship to our family and a significant impact on our lives, our relationship and the lives of our children. She applied for temporary disability benefits but, like many, was initially denied and along with her attorney now awaits her turn for appeal. Surviving on one salary is not easy and I now have no option but to take a temporary leave of absence from my job in order to care for her around the clock during the first part of her recovery. Doing this will cut my one salary by almost half.               I am asking for help to defray costs associated with the surgery, the recovery, the back and forth trips to PA, the time lost from work for her, as well as time I will lose. Expenses add up quickly and amount to well more than we have. The sooner things are in place financially the sooner we can focus on Patti getting the care she needs. Surgery is scheduled to take place a few days before Christmas. Unfortunately, this places additional stress on our family, as this will be our first holiday without her here at home with me and her girls.                  Being in a position of needing to ask for help is incredibly humbling and not a decision I make lightly. We are so grateful for anything you can offer and greatly appreciate your help in taking some of the enormous stress off of both her and myself, and giving her the Christmas present she really needs most.             Thank you, in advance, for anything you can do to help us.                                  Shannon and Patti   #pattispancreas

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Organizer

Shannon Nickerson 
Organizer
Absecon, NJ
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