Main fundraiser photo

Felicia's Fighting Lupus: Our Story

Donation protected


                       Lupus and its Complications: Our Story

                    My beautiful wife, Felicia, was diagnosed with lupus erythematosus in 2001.  In the years since, she's additionally had many serious medical issues requiring extensive treatment.  We've endured these medical challenges together - Felicia handling it all like a champ - always smiling, always putting family first, eager to jump in and lend a hand to help others, and even becoming the ultimate "go-to" when anyone needs a party planner!    

However, right now, Felicia's experienced yet another setback from complications associated with lupus, and we're asking for additional prayers and support from our family, friends, and loved ones at this time.

What exactly is lupus, you ask?  Lupus is called the "Great Imitator," because it can appear to be many other diseases. It usually takes several years of testing to rule out other diseases before confirming a diagnosis of lupus, which is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). With a NORMAL immune system, antibodies are produced which protect the body by fighting off “foreign invaders,” such as viruses, bacteria, and germs. When a person has lupus, something has gone wrong with the immune system, such that it is unable to tell the difference between “foreign invaders” and a body’s healthy tissues, and results in the production of auto-antibodies – which ultimately attack and destroy healthy tissue.

When auto-antibodies are released into the system, this causes inflammation, pain, and damage in various parts of the body, and these ill-effects can last for weeks.   For example, instead of a flu virus lasting the normal three days, a person with lupus may be down for weeks at a time while their body fights off not only the flu, but also recovers from the flare-up which has resulted when auto-antibodies are released into the system.  A person with lupus may always feel tired, as sleep can be very difficult, and almost impossible during these flare-ups.

We haven't just dealt with lupus.  In fact, Felicia's medical issues over the years have required eight surgeries.  She has twice been diagnosed with cervical/uterine cancer,  receiving 19 rounds of chemotherapy.  On top of that, Felicia's large intestine was removed which necessitated an ileostomy for six months.  But she endured, with that endearing smile on her face, always a gracious wife, encouraging me to enjoy my own passion of fishing, and joining me on as many fishing trips as possible!

After making full recovery from these illnesses, and in forging ahead in establishing a career for herself, it was quite wonderful to see that my sweet wife had finally found HER OWN passion, which was selling homes!  Felicia's energy abounded, and she was enjoying great success as a real estate agent with RE/MAX Advantage Plus.  We were just starting to enjoy life to its fullest again, and after 11 years of marriage, looking forward to being able to finally start our family.

However, this past April, for three weeks, Felicia began experiencing extreme migraines, and went to see her physician, who was concerned because she also had a fever and high blood pressure.  She sent Felicia to the ER, where she was given a high dose of steroids, which is the general protocol for inflammation due to lupus.  After a multitude of blood tests and a spinal tap, Felicia was discharged home with instructions to lay flat for 48 hours so that the spinal fluid could return to normal. Once home, Felicia’s extreme migraine pain did not reside, so I rushed her back to the hospital, where she was given more steroids. A day later, Felicia’s CT Scan and MRI confirmed her spine was leaking fluid, and her brain was also inflamed.

We both met with a Generalist, Neurologist, and Rheumatologist, whom all agreed that she was suffering from vasculitis of the brain - caused by lupus.  With this condition, it was not safe for Felicia to be given blood pressure medication, as it could cause a stroke. So Felicia was kept in the hospital while she was treated intravenously with high doses of anti-seizure medication, steroids, pain medication, and anti-inflammatory medication.

After being discharged, we met with Felicia’s neurologist who would put her on a treatment plan to (a) get rid of the vasculitis so as to (b) stop her debilitating migraines.  We agreed to a regimen that would begin with Felicia receiving 14 nerve block injections to her head to stop some of the pain and effects of the vasculitis, and following up with daily doses of anti-seizure medication, and infusion therapy with high doses of oral steroids.  We were told that surgery might at some point be an option, but Felicia vehemently insisted that having already gone through so many past surgeries, it’s the last option she would ever consider, as long as other options are available.

Treatment has not been without its side effects, however, and with the steroids, Felicia experienced agitation, anxiety, hunger and weight gain, restless leg syndrome, and insomnia.  Additionally, the anti-seizure meds have caused lethargy, lack of coordination, loss of appetite, diarrhea, slurred speech, extreme dry mouth, the shakes, and hormonal imbalances causing hot flashes and night sweats. The treatment side effects were almost worse than she experienced with chemotherapy, and although we love each other dearly, I can assure you this was not an entirely pleasant summer for Mr. and Mrs. Burch!

Then, just over a week ago, my wife began having “mini-seizures” at home.  Waking up on the bathroom floor, Felicia was not sure how she got there, so she called the Neurology clinic which instructed her to call 911 immediately.

Once at the ER, Felicia’s heart rate was over 135 bpm, and during her MRI she experienced another seizure, so the neurologist admitted her to the hospital.  That evening, her oxygen dipped into the 70% range, her heart rate was in the 150's, she had slurred speech, and could not remember her name, the date, or where she was. Experiencing another seizure in the hospital restroom the next day, Felicia was on the floor, unresponsive, incontinent, heart racing in the 140s, her oxygen was dropping again, and her blood pressure was 167/133. The trauma team was called in to stop the seizing and administer meds. After that, thank goodness - she was not allowed to leave the bed without help.

Several days later, Felicia was allowed to return home, and we have a new treatment plan devised by her neurologist and rheumatologist.  It has not yet been determined whether Felicia has epileptic myclonus, sleep myclonus, or atonic seizures.  She will have a 2-day test done where they will induce a coma and watch her sleep.  Her doctors believe the seizures may be from lupus attacking her brain, but they are unable to predict whether this flare-up will subside eventually, or if her brain vasculitis will remain indefinitely.

After being given IV fluids for severe dehydration, Felicia was also given a dose of Solumedrol. And we are very thankful to announce she has been taken off the Prednisone!! But because Felicia has only half a colon, she cannot absorb medications like most people, and these meds must be received intravenously. 

So here we are today:  Currently, and moving forward, Felicia is on 400mg of Plaquanil to start, and will begin Methotrexate injections/IV (which is a form of chemotherapy) as well as Benlysta IV treatments every four weeks. Daily, Felicia takes a high dose of both Depakote and Zonisamide for seizure prevention.  

But - unfortunately, these powerful drugs can cause serious complications with regard to any possible pregnancy, so at this time our baby-making plans are on hold again, so we can focus on bringing Felicia back to good health, and trusting that God will let us know when the time is right for us to begin trying again.

But, treatment is very, very expensive - overwhelmingly so.  Any assistance at all that we are able to receive in maintaining proper treatment for Felicia, as well as handling incurred and ongoing medical expenses, is sincerely and greatly appreciated. While insurance covers some of my wife's treatment expenses, it does not cover all of it, and this will be ongoing, indefinitely.  While I am truly thankful for my job and salary, Felicia has not been able to work her much-loved real estate job since April, and it’s honestly become very difficult keeping up.

 Felicia is in pain every day of her life – but with her infectious smile and uncomplaining attitude, you may not be able to see it.  I’m lucky to have her as my wife, and she’s been a great partner to me, and “mom” to our two rambunctious dogs!  It will be a long journey ahead to get Felicia to feel somewhat normal again, but with her positive attitude and faith in God, and our love and commitment to each other, we are confident a treatment-free life is definitely in our future!  We are so very thankful for all of the prayers, meals, support, and well wishes we’ve received, and for the love and support shown for both of us during this time.  Much love and appreciation – Matt and Felicia Burch

Isaiah 41:10- Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.

www.lupus.org
www.epilepsy.com
https://medlineplus.gov/druginfo/meds/a682018.html
http://www.benlysta.com
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

#LUPUSSUCKS
#CureLupusNow
#FightFeliciaBurch




Donate

Donations 

  • Nina Gayheart
    • $20 
    • 7 yrs
  • Anonymous
    • $1,000 (Offline)
    • 7 yrs
  • Mr & Mrs Anonymous
    • $50 (Offline)
    • 7 yrs
  • Anonymous
    • $100 (Offline)
    • 7 yrs
  • Anonymous
    • $1,000 (Offline)
    • 7 yrs
Donate

Organizer

Felicia 'Schwan' Burch
Organizer
Savage, MN

Your easy, powerful, and trusted home for help

  • Easy

    Donate quickly and easily.

  • Powerful

    Send help right to the people and causes you care about.

  • Trusted

    Your donation is protected by the  GoFundMe Giving Guarantee.