Becky has been suffering with her debilitating disease for over 10 years and has reached the point where the current scope of treatments is no longer providing any relief and is destroying what little quality of life she has. Please take the time to read her story below and if you can, donate to our cause. Thank you!
In early 2002 Becky had her Gallbladder removed by a local surgeon. Nothing about this seemed out of the ordinary as many people wind up with Gallbladder issues and we thought Becky was no different in this respect. Shortly after her surgery, she was still having severe right upper quadrant pain which mirrored what she had the Gallbladder taken out for.
Months of tests, hospital stays, follow ups was leading us to no answers. She even was hospitalized the day before our wedding, but was strong enough to push through and make it down the aisle. After some more doctor visits and testing, her surgeon threw a wild thought out there. He suggested that she had a rare disease called Pancreas Divisum with Sphynchter of Oddi Dysfunction. Supposedly this disease only effects 1% of the population, which is where the uniqueness of Becky’s battle begins.
The disease cuts off the Pancreatic Ducts that release enzymes into the digestive system. This causes severe pain and Chronic Pancreatitis. While many people may have this disease, it remains dormant in most of us. However, in Becky’s case the Gallbladder removal must have activated the disease. We have met quite a few people as of late that have had this same exact situation occur, so it is not as rare as we were led to believe.
Originally, the local “specialists” only gave Becky 5-7 years of life with a very poor quality as well. We could not and would not accept that as a final answer so we did some more digging. Eventually, we got referred to a doctor at John’s Hopkins that was having some good success in placing stents in the pancreatic ducts. At the time those stents were very short term and could only be in the ducts for 72 hours. The intent was for the body to begin forming scar tissue and make the ducts more patent to remain open.
This same doctor eventually moved to another Baltimore hospital and became a leading surgeon in their Digestive Health and Liver Disease Department. He also advised us of a stent that could stay in for up to 3-4 months, thus allowing the ducts to remain open with assistance. Fast forward to now and Becky has endured over 50 of these procedures. Each time she is hospitalized for about a week or longer in the Baltimore Hospital. This has put a massive strain on her physically and the whole family suffers with her mentally and emotionally. She is torn from her children every 10-12 weeks for about a week or two at time. In between she struggles to get through each day because of the pain and the high dose narcotics she is forced to take just to be able to function.
We have now reached a point where the stents are not working and surgeries are required more often and the hospital stays are getting longer and more draining. After the latest surgery in late March, we decided enough was enough and we needed to find another form of care. After what seemed like an eternity on the internet reviewing her disease, we found that a few hospitals were engaging in a newer still experimental procedure. The surgery in question would remove Becky’s Pancreas (the source of all her pain) as well as her spleen. Doctors would then harvest the Auto Islet Cells from her Pancreas if possible and re-inject them into her Liver. With some meds, a lot of luck and Gods hand, these little cells would begin to produce Insulin and help avoid Becky from becoming a Diabetic.
This sounded very involved and a bit risky, so we began researching the specific surgery and found that one hospital had virtually perfected the procedure and was the foremost facility in the country for it. The University of Minnesota in Minneapolis has successfully completed over 400 of these procedures and seem to have a good grasp of the post-op care needed. To add to the drama, a young lady that attends our Church actually knows someone that had this same procedure done in late 2011 and she is now Insulin free and more importantly PAIN FREE.
Now, this is the part where the shoe drops…
My employer has been fantastic in understanding all the time off I have had to take over the years to help Becky and supplies me with great heath insurance. However, there are limits to even the best insurance plans. The hospital in Minnesota does not fall into the insurance provider’s scope of contracts and with the procedure being so rare and experimental, her Medicare back-up plan is also null and void. Essentially, in order for Becky to get this life saving procedure we are looking at a “self pay” situation. The hospital has been kind enough to fore warn us of the financial implications and we are looking at a medical bill of $250,000-$300,000.00. I know…I swallowed my pen cap too when I first heard this.
That is just the medical side of it. We then need to fund the travel to Minneapolis for multiple pre-op appointments, the actual surgery and recovery and quite a few post-op follow-ups. During her surgery and recovery Jim (Becky’s Husband) and Dick (Becky’s Dad) will have to share relocation duties and live in Minneapolis for 2-3 months. Becky will be hospitalized for at least 4 weeks and be required to stay in Minneapolis for an additional 1-2 months for follow up, monitoring and daily infusions and must be within 10 minutes of the hospital. In order to make her as comfortable as possible, we are looking into a short term apartment lease in the city.
The finances are the easy part ultimately as this will be putting a massive strain on the children and the family staying behind in Jersey. I can’t begin to tell you how simply awesome it is to finally have a ray of hope to end Becky’s suffering. There is no way we will allow something like finances to stand between her and a cure for this debilitating disease. We are asking all of our family, friends, acquaintances and anyone else willing to help us fund this massive undertaking. Anything you can afford to give will go directly to medical and associated travel costs.
Please help us give Becky a chance at a normal life, where something as simple as going to Dinner with her family is once again possible. Help us give our boys a chance to know what a healthy Mommy is like. Both of our younger boys have never known what it is like to have that and have always been so understanding when Mommy needs to lie down or when Mommy can’t make certain events because she feels so awful. They deal with the constant disruptions of Mommy going to the hospital every 10-12 weeks and never complain. More than me or the rest of the family, those boys and my wife deserve a chance at what everyone else refers to as normal. Please help Becky get free of the pain and dependence of the medications that she needs just to make it through the day.
God is good and has opened a door to us that we never ever thought possible. Miracles are possible and with your help Becky can live hers now! All our love and appreciation!
The Johnson Family