Janine Gilbert-Person of the Month- June, 2017
The person of the month for June, 2017 is Janine Gilbert. The EPIC Foundation is thrilled to give recognition to this amazing woman and fellow warrior! Janine has graced The EPIC Foundation with her talents and skills as the Senior Editor for the foundation. Janine is known in the Cushing’s community as a tireless advocate who has turned adversity into an opportunity to make a difference in the world!
Janine has always had a vision to impact change and increase awareness of Cushing’s Syndrome after having gone through her own adversity. She created a Facebook page called, “Cushing’s Awareness” that reaches the masses and has changed so many lives! Recently, “Cushing’s Awareness” celebrated 6 years of existence and now they have over 1300 likes!
Janine’s page was a result of her spontaneity. However, her continued mission and her growing page comes from a vision to reach people seeking answers. In the beginning, Janine had been starting to become more active on Facebook and joining more groups about Cushing’s. Though she belonged to groups that included other survivors of Cushing’s, Janine found that her situation was very unique and she was disheartened because she felt like there was nothing that specifically applied to her. Then, something unfortunate happened: Janine was denied access by members of a specific group and it was quite upsetting.
Now, Janine felt there was no place that she really belonged! One night, while awake, Janine thought to herself, “why don’t I start my own group?” The funny thing is that she didn’t know much about Facebook at the time so instead of creating a group, she accidently created a public Facebook page. So, her page “Cushing’s Awareness” came out of spontaneity! Janine considers it the best accident she ever had! She likes to think of it as a public place for Cushies to start or for Cushies that don’t want to join a group on Facebook. She says, “It’s also great for friends and family that just want to learn more. Either way, I feel like I have accomplished what I set out to do. And I guess the rest is history.” The Cushing’s community from all walks of life and with different journeys have benefited from having this page as a tremendous resource! Loved ones also visit the page and learn how to better support their loved one during the journey.
Janine has been through so much during her trial with Cushing’s. She is an overcomer who barely beat death and she wanted a way to give back. She has turned her adversity into opportunity by creating a place where she felt welcomed and she could welcome other people and let them know that they are not alone.
This is Janine’s story:
When Janine was 17 years old, she left home on a Theatre Scholarship for College. Her intention was not to return. However, she became terribly depressed. She didn’t tell anyone about the depression because she didn’t understand what was going on, herself. After 2 semesters away, she came home and told everyone that she decided she no longer wanted to pursue acting and since that was what her scholarship was for; it was silly to continue there. She enrolled in community college.
Upon enrolling in Community College, she met her first real serious boyfriend. He wasn’t exactly the best influence, and they used to “party hard”. Shortly after getting together, she began to gain weight rapidly. Over the course of about a year, she doubled her size, became severely depressed, and had blood pressure through the roof. She also had some black outs while she was at school. She remembers rushing to the school bathroom as everything went black and laying out on the cool dirty tile to regain consciousness. She was also working full-time, which was good for the health insurance.
Every month, since age 19, Janine would visit the doctor and he would tell her that she was depressed and needed to exercise more. The doctor sent her to a therapist and psychiatrist for meds. He would also increase or give her more blood pressure medicine on each visit. Despite increasing medications, Janine’s blood pressure continued to increase.
Janine’s weight bottomed out at about 315 lbs. Each visit, the doctor would look at her disappointingly and tell her to exercise and ask her about her depression. This continued for about 3 years until FINALLY her doctor said “maybe something else is causing this high blood pressure, maybe you have a narrowing of the arteries to your kidneys. I am going to send you to see a Nephrologist just in case.”
Janine describes the day she saw that Nephrologist as the day that her life changed forever. He wanted to start with a scan of her kidneys. The next day, he called her personally and asked her to come back in. He said, “we saw something a little suspect on your scan and we were hoping you could come today for a more in-depth look.”
She agreed and went into the local hospital he was on duty at that day. They did the scan and put her in a bed and admitted her at once with no explanation.
Finally, they said they saw what is called an Aortic Aneurysm on her scan along with a Dissection. They were unsure if it was stable and wanted her to see a doctor that specialized in this sort of thing. They were transferring her immediately over to Thomas Jefferson University Hospital in Philadelphia, PA. Janine was terrified and wondered if she was going to die.
Upon arriving at the hospital, Janine saw several specialists. The first of which, was a cardiac doctor. They did scans and tests and examined her aorta carefully. It turned out that her aorta had dissected some time ago but was stable now. That meant, that “by some grace of God” she lived through her aorta tearing and was not even aware it happened. The good news was that it was stable, the bad news was that it was still bulging. This meant, if it became a certain width, surgery would be inevitable. The best way to avoid this, they said, was to get to the bottom of why her blood pressure was so high and uncontrolled. They sent in an Endocrinologist. He took one look at Janine and told her that she had Cushing’s. Janine had no idea what Cushing’s was but the doctor sent her home with educational materials.
Janine did all the testing the Endocrinologist ordered and went back to see him within the next few months. He called in the head of the practice along with some students and went over all of the results with her. He said he believed her adrenal glands had tumors that were not only causing Cushing’s Syndrome, but they seemed to be producing excess Aldosterone, as well. It was causing her high blood pressure and it needed to be rectified quickly due to her new “cardiac complications.”
That doctor had a friend over at the National Institute of Health (NIH) in Bethesda, MD, and wanted her to go there. They specialized in the problem she was having, he said. NIH arranged for Janine to come down for a few days of testing right away. At this point, Janine had broken up with her boyfriend after deciding that she needed to surround herself with positive people. So, she was living alone.
Her Mom brought her down to NIH for the testing. It was non-stop testing and scans for several days straight and then she went home. They called her back and asked her to come down again for an adrenal sampling procedure. They said it would be a good way to confirm what they suspected. They suspected Bi-lateral secreting adenomas of two different types. They confirmed she had aldosterone producing tumors on one gland and cortisol on the other. Janine was their FIRST known case of this kind!
Janine had two separate surgeries. First, she went down in 2004 and had her left adrenal gland removed laparoscopically. They chose left first because it’s easier to reach and that was the adrenal with the nasty aldosterone tumors. Afterwards, her blood pressure actually came down a bit. They were pleased and so was she. Then in 2005, she went in for the right adrenal gland. They told her it would be harder to reach and she could wake up with a large incision if the laparoscopy couldn’t get it. Luckily, she woke up with 5 tiny incisions, and the surgery was a success.
NIH also left a tiny piece of her gland in by removing only the tumors leaving a part of the gland intact. Their hope was that it would wake up one day and that Janine wouldn’t need to be on replacement steroids for the rest of her life. About three days after the second adrenalectomy (the Cushing’s one), she felt great and they sent her home on 30mg of Hydrocortisone along with one Fludrocortisone pill a day.
It wasn’t long before Janine was in the Emergency Room and thought she was dying. She would go into the local hospital and they would check her out and tell her everything was fine. They would release her and she would just end up back at the hospital. This happened over and over for about 90 days. She was even committed for a psych evaluation.
Well, it turns out that Janine was going through Cortisol withdrawal which means that the body was adversely reacting to the lower Cortisol levels in her body and the sudden drop in Cortisol from very high to a much lower level. Janine knows that now but wishes that she knew it back then and that someone would have known how to help her. She feels lucky that she didn’t go into a full on crisis.
In 2006, they determined that Janine’s body was making aldosterone so she stopped taking her Fludrocortisone. She was doing much better on the 30 mg a day of Hydrocortisone. They did several tests to see if the partial adrenal had woken up and unfortunately it did not. As a result, Janine has to be on cortisol replacement for the rest of her life.
Also, Janine’s blood pressure had been too high for too long and the damage was irreversible. However, her blood pressure was being controlled nicely on fewer medications than before. She had also lost a significant amount of weight.
After monitoring her Aorta to make sure the dissection and aneurysm didn’t change, they determined that, unfortunately, it had widened. It was at the point where surgical intervention became important. If her aorta were to rupture on its own…the mortality rate was practically 100%. People didn’t and still don’t survive aortic ruptures. She was only 25 years old.
Janine met with a team of cardio-thoracic and vascular surgeons. They deduced the damage was too large and severe and this could not be fixed vascularly. That meant they had to open her up the old fashioned way and put in a graph. It would be a long surgery and they would have to put her heart and kidneys on bi-pass. They would have to do it in order to isolate her abdominal aorta and sew in and attach the graph then reconnect all of her major arteries and organs. It would be a retro-peritoneal approach.
In November, 2006, a couple of weeks after Thanksgiving, Janine went into Jefferson for Aortic graph repair surgery. This surgery was complicated and came with a lot of trauma. The surgery was long and arduous. They brought her out late that day, only to have her crash and bleed and rush her back in. This happened a few times. Then once she was stable enough to come off of the bi-pass; her kidneys stopped working. They were moments away from putting her on dialysis when her kidneys sprung to life.
Janine was in and out of surgery and consciousness until the end of December early January; when they thought she was “out of the woods”. They finally moved her to a regular floor and out of ICU. She had a giant gaping wound which extended from her lower left groin, up her side to right under her breast, where it turned and went 3/4th’s of the way across her back.
Then suddenly, one night she remembers being so tired. She told them she just wanted to sleep. Apparently, she didn’t quite wake up. Janine went into acute adrenal crisis and acute sceptic shock. It caused a spinal infarction which basically meant there was an interruption in the flow of blood and fluid to her spine. Janine woke up and couldn’t feel her legs!
She remembers them giving her several spinal taps in an effort to get everything moving in her spine again. It worked! Slowly, and painfully, she began to feel her toes and her feet and her ankles etc. On top of that, she was being brought down for surgery frequently for them to “debrid” her wound. The infection was so bad in her side that it was eating away at her ribs. Each surgery she would come back with a little less of her ribs and a little more pain. They hooked a wound vac up to the gaping hole in her side in an effort to help the infection and allow it to heal from the inside out. At this point it was only about a foot wide as her staples and stitches on the outer edges had healed. She was doing physical therapy in-between in an attempt to learn how to walk again.
Janine had been dating a new boyfriend for several months who said that he would not walk out on her through all of this. However, he walked out and ended the relationship after her paralysis. Also, during this time they took out her catheter. It was then that she realized just how extensive the damage was. She was unable to void. Janine had to learn to catheterize along with painful bladder spasms and a neurogenic bowel. They closed up her side once they felt they removed all of the infected tissue and bone. Janine continued physical and occupational therapy and learning to care for her bowels and bladder.
Janine overcame! She learned how to walk, barely, with a walker. But to be released to her 2nd floor apartment, she needed to be able to get up the stairs. She did it! On March 13, 2007, Janine was released from the hospital to her “lonely 2nd story apartment”.
Janine had such a hard time and even went back to work about 45 days later because she didn’t have a choice.
A decade later, Janine is still having a pretty hard time. She says that she has had ups and downs but she is grateful that she is still here! Janine expresses gratitude every day and understands the great adversity that she has overcome! Janine shares her story to inspire and empower others! Janine surrounds herself with other people who express gratitude and add to her life! She also has an amazing partner in her life!
Janine believes in coloration and working together for the cause! She and Dr. Karen are affiliates and have the common goal of reaching others and providing support. She also trusts in and works with Tiffany Wilburn, a fellow Cushie warrior who also is an amazing advocate in the Cushing’s community.
Janine feels that she can count on Tiffany to keep up with the most current information on things. If there is something new that has been posted somewhere online, chances are, she is posting it that same day. Tiffany is also a tremendous support to Janine and is there for her when she needs her. Janine surrounds herself with people who understand the struggles of a Cushie and how it can continue to affect us in our day to day lives. Janine truly believes that , together, we are EPIC!
Janine is very passionate about what she does! In her own words, this is who she aims to reach: “You know that girl that is overweight and feeling all alone? She’s wondering what she did wrong? That girl that we once were? That’s the person I want to reach. I want to tell her or him that he or she is not alone and that there is a whole world of us that have been there.”
Janine wants to help prevent others from going through the same thing she went through with seeking help and a diagnosis. Her original doctor did not take the time to thoroughly examine her and pay attention to her concerns. She feels that her original doctor did her a disservice by not taking her seriously and telling her to just diet and exercise. At that time, Janine didn’t question what a doctor said to her and didn’t think that they could be wrong. Even though she knew that something was wrong with her body, she didn’t question the doctor. Now, she knows that we should advocate for ourselves if we know that something is wrong with our bodies. Janine went through a lot of suffering and damage for a long time. She wants to prevent that for other people with “Cushing’s Awareness”. Her passion shines through in everything she does!
Janine wants the world to know that most of what happened to her could have been prevented. She wants it to be a cautionary tale. Janine wants people to take this disease and its symptoms seriously. Janine almost died!
Janine believes that awareness is key! She is doing everything that she can to contribute to increasing awareness of Cushing’s. She also promotes self-advocacy and encourages people to fight for themselves and for their lives!
The EPIC Foundation is so grateful to have such an incredible person as a part of the EPIC family! We proudly honor our person of the month: Janine Gilbert! We honor you, Janine, and thank you for everything you do! Thank you! Thank you! Thank you!
To learn more about Janine Gilbert and Cushing’s Awareness, please visit: https://www.facebook.com/cushingsawareness
Together, We are EPIC!