Bethany Johnson's Gut Rehab

My friend Bethany Johnson is in need of an intestinal transplant after years of fighting a rare debilitating and progressive disease called Pseudo-Obstruction Syndrome.  The disease slowly derogated her digestive system. She has struggled with the disorder since her youth and after years of managing it, the disease progressed to the point that she is required to have an intestinal transplant.  She is currently on the waitlist for a Modified Multi-Visceral Transplant at the Cleveland Clinic. Which means she will receive a new stomach, pancreas, small intestine and large intestine. Due to the complexity of the transplant, the organs needed and other match criteria, this could be a could be a long wait (possibly up to a year or longer).  


The plan is two-phase.  The first step is a surgery to remove what is left of her intestines and the infection within them. Then some time for healing and rehabilitation they will proceed with the transplant.  Once she receives the transplant she will be in the hospital for a minimum of 6-8 weeks. Complications are common so she is expecting lots of ups/downs. For another 6 months she will have to remain close to the hospital to handle any complications and rejection.  In addition there is extensive testing that will have to take place regularly to monitor her progress.


So...in February 2018 she left behind her husband, her friends, her home, her work, her life... in Chicago and moved to Cleveland for her transplant journey.   Her amazing father also left behind his wife, his family, his house, his life ... in Nebraska to join her. Her first few months in Cleveland were brutal involving several hospitalizations, loss of more weight and strength. In April 2018 she underwent the first surgery and had the remaining portions of her intestines removed.  She is currently listed for transplant and is awaiting the call for a match.


Being displaced from her home for the better part of this past year has already put a huge burden on them.  She has been unable to work and has at least 2-6 doctor appointments each week to maintain her health and check on her nutrient and other levels to make sure she is on track.  She has always maintained her employment throughout her condition leading up to the move to Cleveland but was forced to leave her job as a result of her illness. She has endless medical bills, prescription and supply costs, and has to cover living expenses.  The unknown length of time that she has to maintain all these costs before even receiving the transplant is overwhelming to her and her family. Not to mention the daunting expenses of the required specialty prescriptions she will be on for the rest of her life once the transplant takes place.  Please contribute anything you possibly can to help the beautiful soul keep fighting for her life. She's come so far and needs us more than ever right now.


She has started a blog for those who would like to stay updated on her journey, learn about her story up until this point or learn more about her condition .   https://bethanysgutrehab.blog/

I will also be giving updates on here as well.    


THE BACKSTORY:

As I mentioned Bethany has struggled with the disorder since her youth and after years of managing it, the disease progressed to the point that she required several surgeries just to maintain her digestive function.  She faced everything from dealing with constant intestinal obstructions, scar tissue, adhesion issues, intestinal twisting, sepsis and accompanying all of that constant pain. Despite decades of coping with the disease, Bethany was able to lead a fairly normal life, with only intermittent hospitalizations and surgeries.  


That life drastically changed when a few years ago when her colon twisted and ruptured.  Surgeons conducted an emergency surgery and removed the majority of her colon and part of the small intestine.  Despite best efforts her digestive system was never able to recover and to this day she is required to rely on IV nutrition in order to survive.  The IV nutrition is critical for nutrition and survival however, with the long term use it has started causing other complications such as liver issues.  In addition, she was suffering from a severe infection in the small intestines which became untreatable with conventional antibiotics. She was unable to thrive, losing both strength and weight by the day.  The amount of bacteria overgrowth was using massive of amounts of resources and stealing nutrition from her body. It was putting to much strain on her and her organs. Her weight had dropped to dangerous levels despite being on the IV nutrition.  She was literally starving to death.


It was finally determined that there were no other options available and she would need to undergo an intestinal transplant.  After being evaluated by a few transplant hospitals she decided upon the Cleveland Clinic. The intestinal transplant team proposed a two-step process.  First they would complete a surgery to remove all remaining intestines and along with it the infection. After a bit of recovery, healing and rebuilding , she would then be listed for transplant.  Lastly, once a match is found they would proceed with the second surgery where the entire transplant would take place.


In February 2018 she left behind her husband, her friends, her home, her work, her life... in Chicago and moved to Cleveland to start her transplant journey.   Her amazing father also left behind his wife, his family, his house, his life ... in Nebraska to join her. In April 2018 she underwent the first surgery and had the remaining portions of her intestines removed.  It was a bumpy recovery and it pushed her body to the absolute limits. Complications of the cardio and respiratory systems landed her in the Intensive Care Unit.


She is an incredibly strong and determined individual and she pulled through!!  She has made incredible strides since that two-month hospital stay. She is thriving again on the IV nutrition, gaining weight and strength every day.  As you can imagine however it is a full time job taking care and maintaining her new 'system'. She has bags and tubes that she carries with her 24hrs a day that serve as her new digestive system.  Yet, she still manages to get out and about and pushes on to do as normal activities as much as she can.


As far as she's come in the process...she has a long way to go and needs ALL the help she can get.  In all the years that she has struggled with this disease she kept it to herself, never wanting to burden anyone with it.  She is the type of girl that will never say she can't. She WILL. She'll SHOW YOU! When she was first diagnosed with the disease they told her she wouldn't have a long life expectancy and she has already surpassed those expectations.  


She never let it stop or discourage her.  She pursued her passion and went to undergrad for Architecture...and then on to receive her Masters in Architecture also.  She became a licensed Architect and has worked for some incredible firms and on some incredible projects in her life. She got married and bought a condo.  In addition, she has always put helping others in the forefront of her life. She is always advocating for change to make the world around us just a little better.  Throughout her journey she has been writing a blog sharing her experiences, her lessons, and her vision. It is INCREDIBLY inspiring. She wants nothing more then to just touch the lives of others around her and make a difference.  


Life won't be the same after the transplant but it will be a huge improvement and she is excited for the opportunity to keep living and following her passions.
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Organizer

Linda Montanile Smith 
Organizer
Chicago, IL
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