Meagan Jenkins

“When the world says give up, Hope whispers…Try it one more time.”

Never giving up ~Meagan

 

The first person of the month is Meagan Jenkins. Meagan is a fellow Cushie warrior who, against all odds, fought to get an adequate diagnosis and treatment, fought for her life, and continues to fight to thrive. She lives her life with the attitude of never giving up. Meagan has an incredible story of survival. Despite all of the adversity that she has been through, Meagan has made it her mission to give back and help others. Meagan has taken on a position with The EPIC Foundation as Lead Advocacy Specialist. She has the task of overseeing the 12 committees that help the foundation operate on a daily basis. Additionally, Meagan is invested in making sure that our members feel advocated for! Advocacy is extremely important to her! Meagan’s passion in life has always been to serve others! Please read her amazing story:

 

Meagan Maureen Jenkins is married to her best friend Matt. They have three beautiful children together: Owen, Isabelle and Nolan. Meagan and Matt met the summer of 2004, at Kohl’s Department Store in Madison where she got a job as a cashier after losing her job as a CNA because of health problems, which she now knows were related to Cushing’s Disease.

 

 

Before the painful symptoms of Cushing’s began, life for Meagan was very different. She spent a lot of her free time running around, swimming, and playing.  She was involved in sports and loved playing “house” and dreaming of the life she would one day have when she built a family.  She loved running and used to run 3-5miles a day and ran in many different races!  She spent time volunteering at her church, and helping elderly neighbors anyway she could.  She spent many weekends feeding the homeless and bringing them things they needed to survive living without a home.

 

Between the ages of 10 and 11, Meagan had two major surgeries and lost her right kidney do to un-diagnosed urinary tract infections.  Around 12, she started gaining a significant amount of weight and noticed stretch marks around her abdomen area.  This was chalked up to being related to hitting puberty.

 

Within a couple years after the unexplained weight gain, Meagan began experiencing extreme insomnia and pain. This compromised her ability to maintain employment and also caused her to use different ways to adapt at school. None of the different therapies and drugs recommended by physicians were effective in treating these symptoms. The pain was unbearable and all Meagan could do was pray that one day the answer would come to light for how to treat her.

 

Meagan graduated high school and got a summer job at Kohl’s Department Store where she met Matt, who is now her husband, best friend, and the love of her life.  He gave her the boost and strength she needed to keep fighting thru this pain.  Meagan aspired to attend nursing school. However, she was now experiencing memory fog and extreme fatigue and she knew this would negatively impact her, not to mention the job would be way too strenuous on her body.

 

Meagan and Matt became pregnant and had Owen in March of 2006, and were married in May of that same year.  Within 7 months, they found out they were expecting and they were blessed yet again in August of 2007.  Towards the end of each of these pregnancies, her health started to decline and never seemed to get better.  This was especially true with the birth of their last son, Nolan who was born in January of 2010.  Nolan was born nearly 2 months early because Meagan’s blood pressure was sky rocketing and she was having severe headaches, dizziness, and her pain was unbearable. She seemed to gain excessively around her pregnancies and she went up 115lbs within 3-5years.

 

Throughout the years, Meagan’s symptoms included heat intolerance, hair Loss, purple striate, chronic pain, muscle weakness, nausea, low vitamin D, thyroid antibodies and fluctuating TSH, extreme fatigue , insomnia at night, hard blood draws, low Immune system, G.I. issues, facial flushing, easy bruising, hypertension,  depression and anxiety, and unexplained rapid weight gain.

 

Meagan finally came across information about Cushing’s Disease.

Cushing’s Disease occurs when a benign (noncancerous) tumor on the pituitary gland, located at the base of the brain, produces excessive amounts of a hormone called adrenocorticotropic hormone (ACTH). The ACTH then sends signals to your adrenal glands (located on the top of the kidneys) to produce an excessive amount of an important steroid hormone called cortisol. Cortisol is your stress hormone. When too much cortisol is produced, it poisons your body, causing many symptoms. Meagan knew that this was her answer. Even still, she was dismissed by doctors after testing because she didn’t fit into their neat little box.

 

Through online support groups, Meagan was given the name of a Cushing’s expert in Los Angeles, California, Dr. Theodore Friedman. Dr. Friedman does not accept health insurance so everything had to be out of pocket, including travel expenses for traveling over 2000 miles from Wisconsin to California. Loved ones put their heads together to begin fundraising to help save Meagan’s life.

 

Within about a month and half, she had enough to get to Dr. Freidman.  Her new hope was going to begin January 10th, 2012. Meagan and her husband, Matt, had a very positive appointment with Dr. Friedman. It was a very thorough examination and ended with the determination that she needed to do marathon testing from home. Marathon testing is when various test measures are administered across an extended period of time to observe the cortisol cycles of the body.

 

…and so it came! The search was over! April 4th 2012. Meagan had a phone appointment with Dr. Friedman and he said, “Meagan, I’m comfortable and ready to diagnose you with Cyclical Cushing’s Disease and recommend you have surgery.”  Meagan’s suspicions were finally confirmed!

 

(http://www.goodhormonehealth.com/)

 

However, even after an official diagnosis with a reputable expert in Cushing’s, Meagan had an impossible time finding someone who would take her case for surgery. She searched all over the US and even obtained the help of an advocate to search for a neurosurgeon who would remove the tumor from her pituitary.

 

It took from April 2012 to November 2012, even with a diagnosis, to find a surgeon to help her!!

 

The day Meagan walked into the office of neurosurgeon, Dr. Grant Sinson, would forever change her life! She describes him as the most amazing man she has EVER met!

 

Dr. Sinson walked into their appointment and said, “I’m sorry for the hell you’ve gone through.  The recovery from this surgery will be a breeze for you–our hope is it puts you in remission and in doing so, THAT recovery will be HELL for you!”

 

(http://neurosurgery.mcw.edu/faculty/clinical/sinson/)

 

He hugged her. As a silent tear rolled down her cheek, Meagan whispered, “thank you.”

 

Meagan finally received her life saving brain surgery on December 11th, 2012! What a victory! Anyone going through that would have felt like giving up when feeling defeated over and over again! But, Meagan never gave up!

 

Many people do not understand the chronic nature of this process. Even after treatment of Cushing’s, there is a lot of residual damage and, ironically, long term complications as a result of the treatment.

 

Meagan is now left with Hypothyroidism, Growth Hormone Deficiency, Chronic Pain, and a host of other issues that she lives with every day.

 

Meagan acknowledges that she could not have gone through this journey without the love and support of her cheerleaders. In particular, Meagan gives acknowledgement to her husband and life partner, Matt Jenkins. Additionally, Meagan raves about her biggest cheerleader and support, her mother, Maureen Wisniewski. In Meagan’s own words, her “mom exhausted everything! She even brought up Cushing’s to doctors when she was younger because of her buffalo hump, weight gain, stretch marks, and they said no it was too rare and wouldn’t even test”. Nonetheless, Meagan’s mom NEVER gave up on her!

 

Meagan Maureen Jenkins is person of the month because she is a great example of never giving up, of fighting for your life, and for always dreaming despite adversity. Meagan is a reflection of what The EPIC Foundation stands for. She is an empowered patient and now an empowered advocate!

 

Thank you, Meagan, for everything you do and for taking on your new role as Lead Advocacy Specialist at The EPIC Foundation!

 

You can learn more about Meagan by following her blog at http://meaganmj.blogspot.com/