Chloe's fight for her life

Chloe is fighting for her life.

As some of you may know, Chloe was diagnosed with Behcets back in 2014/2015. Both before that diagnosis, and after, she developed multiple other autoimmune diseases and other conditions her doctors call multiple co-morbidities. She had gone on treatment in 2015 but it made her severely ill so she made the choice to discontinue. Fast forward and her health has declined slowly since then, but in the last 1-2 years her symptoms have ramped up, along with flares. On top of struggling with her health, in July of 2020 Chloe lost her job due to the COVID-19 pandemic and has been out of work. In December she got really sick and we thought she developed a new autoimmune disease and since then her health has rapidly declined.

Chloe saw her new Rheumatologist Friday June 4th and we found out that not only was immunosuppressive protocol not followed before she was suppressed, but that the treatments she received are only given 1-3 doses normally and are expected to last a month. Chloe received 6 doses and her body burned through them in 4 days. The rheumatologist said at this point Chloe’s inflammation in her brain, spinal cord, and central nervous system is life threatening and progressing rapidly. She has developed Steroid Myopathy along with another condition impacting her head and neck strength. She is at high risk of the following life threatening conditions: aneurysms, blood clots, another TIA or stroke, and avascular necrosis. The only reason Chloe’s rheumatologist did not send her back in-patient yet is because FMH did not test Chloe for any of the infections they were supposed to prior to immunosuppressing her, and Chloe is at high risk of infection. She has to have someone with her 24/7, cannot drive, and is now on oral steroids to try to suppress the inflammation and keep it from progressing until the Rheumatologist can come up with a game plan and treatment plan. If Chloe gets weaker at all, has any new symptoms, or if her results come back poorly she will have to be back in the hospital, regardless of the risk of infection.

Jake has been supporting her through this time, and was out of work the week Chloe was at FMH getting all of the testing done when they found the bad news. I stay with her during the day when Jake is at work currently and help take care of her, and Jake does the evening/nights and weekends. Chloe and Jake have had to pay for medical equipment and adaptive/supportive supplies for the home out of pocket to make it more accessible for Chloe, and for her rehabilitation once she gets to that point. Gas, food and groceries, other supplies, and bills are all adding up for them as they go through this terrifying and uncertain time. Chloe is fighting for her life and preparing for the worst, and any support her and our family receive during this time is greatly appreciated. Prayers, thoughts, kind words, a text or phone call, or anything else- we appreciate knowing we are on your heart and mind.

Other ways you can help:

-Share this!

-Send Chloe a meaningful message or get well soon card to brighten her day

-Prepare a Vegetarian meal that are easily reheated to be dropped off

-Gift baskets with snacks or food

-Send an electronic gift card for DoorDash, Dominos, Instacart, Amazon, Target, or Walmart grocery
-Chocolate Ensure Enlive Nutrition Shakes
-Caramel Premier Protein Shakes 

Backstory on what lead up to now:

On May 7th Chloe went into an autoimmune flare. She didn’t really know at the time as her symptoms were much different and her heart was racing, she was having lots of chest pain and muscle spasms, and she would get out of breath just laying down talking. She was rushed to FMH on May 11th, as her Cardiologist thought she was having either a heart attack or pulmonary embolism. They kept Chloe until the evening of the 12th and ruled out everything serious with her heart and determined she was having a bad POTS flare, which is a new diagnosis for Chloe. On May 13th Chloe’s heart rate got really high and her left arm went numb so she went to Meritus, once again thinking she could be having a heart attack. In the ER she started losing consciousness, her blood pressure was very high, and she ended up, in addition to her left arm, having her left leg, face and head go numb and a stroke code was called. She was kept at Meritus until the 15th and received horrible treatment, including not being physically examined to see that she could not walk, refused a patient advocate, and more. She was discharged the 15th after they determined she had a TIA (mini stroke) and complex migraine. Chloe was home the 16th while getting weaker and unable to walk, so she saw her Primary the 17th who sent her back to FMH to be re-evaluated.

After multiple rounds of imaging, scans, blood work, and a lumbar puncture/spinal tap, while going into a full autoimmune flare, the Neurologist at FMH found a very high White Blood Cell count, among other things in Chloe’s spinal fluid.

She was told her Behcets/inflammation has spread into her brain, spinal column, and central nervous system and was at risk of permanent brain damage among other things if they could not get the inflammation to be knocked down quickly. She was given 6 days/doses of 1000mg IV Solumedrol Immunosuppressive Steroid Therapy. She was discharged the 21st after receiving her first dose and having a Midline Port put in her arm, and was supposed to have home health care come to do her infusions but everything fell through the cracks and she was admitted again the next day. When she was admitted her Lactic Acid was high and she had spiked a fever so there was concern about infection. Chloe was at FMH until the 25th receiving care for her autoimmune flare symptoms and her IV infusions. She was discharged with the thinking these doses would last around a month in her system giving her time to see the Rheumatologist the following week to get on an aggressive treatment plan, and have home health care come for in-home nursing, physical therapy, and occupational therapy as Chloe was still very weak on her left side and could only walk with a walker and a person with her. After only 2 days Chloe went through 2 days of steroid withdrawal. Monday the 31st her neurological symptoms leading up to the TIA returned full force.

Please follow along for updates! This has been ongoing over the last 3 weeks. It is going to be a very long road, and we do not know what Chloe's capabilities are going to be, or what permanent damage there may be as we move forward. Thank you, and please share.