Agata’s Spinal Cord Surgery & Medical Expenses

Hello! 

My name is Bri Arden Kalikow and I am a friend and colleague of Agata’s. We are a part of the same teaching team at a graduate program at Columbia University. Early on in our friendship outside of work, Agata shared her struggles with severe and debilitating illness. Over the last year, I have helplessly watched my friend and coworker fight for her life. I would never imagine she was so sick with how well she was performing at work. The illness never stopped her from excelling.



As an individual battling rare illness myself, I have once relied on the help and support of my loved ones, and even strangers to get the medical help I needed. Now it is my job to pay it forward. For those of you who know Agata personally, you know she has so bravely battled severe illness for years. Despite being so sick she continues to make us smile undeterred by the daily battles she faces as a result of her deteriorating health. Although she rarely complains about her challenges, she desperately needs our help. Though she works part time from home she is unable to afford the much needed medical intervention. The necessary treatment will not only improve her quality of life but it can also save it. WE can save it.


Agata's STORY:

Agata has been an athlete all of her life. She travelled the world playing soccer and has many achievements. From leading her college soccer team to win the Conference Championship during her senior year to being drafted to the U-19 Polish National Women’s Soccer Team, she has been a tough cookie all of her life.


In 2015, Agata served as a White House Intern under the Obama Administration. While completing her graduate degree at Columbia University, Agata’s health began to deteriorate fast. Yet, she was determined to achieve her dream of graduating from one of the most prestigious Universities. She accomplished that dream and now works for the graduate school, contributing tremendously to the lives and education of graduate students.



Why are we asking for donations?

Agata’s quality of life depends on consistent and invasive medical interventions. Those who know her personally, are aware of her constant battles, doctor’s visits, treatments, procedures and extensive surgeries. Most of the necessary treatments which she needs to function are not covered by medical insurance insurance.



About Agata’s Medical Condition

***UPDATE*** 
Late July, Agata went through a massive surgery to permanently implant a cervical spinal cord stimulator in order to provide some relief and prevent the CRPS from spreading to her face and brain. This has been the most invasive surgery yet and the recovery has been excruciating. The operation consisted of drilling a metal plate to the top of her spine near the bottom of her skull (less than an inch from her brain) and implanting a large battery below her ribs. The two areas are connected with wires running down her back. 




The recovery has been tremendously hard particularly due to the inflammation, potential spinal fluid leak and the head incision ripping open just days after the operation. However, Agata's continuous resiliency has been nothing but inspirational. Your help has made this surgery possible and the recovery that much easier. We are both so grateful for all of the individuals who have offered help. 



In 2017, she was first diagnosed with CRPS (Complex Regional Pain Syndrome), formally known as Reflex Sympathetic Dystrophy,  a progressive disease of the Autonomic Nervous System  and more specifically, the Sympathetic Nervous System. The condition has been nicknamed “The Suicide Disease” and ranked as the most painful chronic condition in modern medicine (based on McGill Pain Medical Scale). The condition causes very severe and often debilitating pain in the affected area as well as the sensation of being on fire. 


The disease spreads with time, affecting other areas of the person’s body. Since being first diagnosed with CRPS, the illness has spread to all 4 of Agata’s limbs causing an indescribable amount of daily pain and discomfort. Agata faces severe burning pain, swelling, sweating, extreme temperature spikes, allodynia ( central pain sensitization following normally non-painful, often repetitive, stimulation), hyperalgesia (abnormally increased sensitivity to pain), skin discoloration, and sensitivity to touch, burning of the skin in the palms of her hands making any daily task (most specifically at nighttime) almost impossible.


Agata has undergone several surgeries on her spinal cord to implant a spinal cord stimulator in her back which overrides the pain signal traveling from the nerves in her legs through the spinal cord and into her brain. The device provided her a great deal of relief for a period of time and allowed her to walk more comfortably. Recently, part of the device broke for a second time requiring another large and very costly surgery.


In order to provide much needed relief, she now also requires a second separate spinal cord stimulator in her upper back targeting her hands. Both the repair of the existing device and implant of the second stimulator will require several invasive surgeries and a long period of recovery.


Although CRPS is a nightmare to deal with in itself, it is only part of Agata’s medical ordeal. Over the last 3 years Agata’s health became progressively worse. Earlier this year, she was diagnosed with having a chronically active infection of the Epstein Barr Virus. This virus causes the common mononucleosis in the majority of the population but very rarely does the virus transform into a life-threatening illness causing a tremendous amount of damage to a person’s body. The virus has been attacking Agata’s body for 5 years creating severe damage especially in her nervous system.



Agata manages a long list of symptoms including severe muscle loss, tingling in her arms and legs, daily low grade fever, headaches every single day, swollen lymph nodes in several areas, hair loss, inability to regulate body temperature, extreme sensitivity to stimulus (sounds and touch), constant ringing in the left ear, exhaustion, weakness, sciatica in the right hip from the battery implant of the spinal cord stimulator, lack of appetite, constant nausea, uncontrolled weight loss, problems swallowing food, sleep problems, very noticeable skin discoloration, full body tremors, irregular skin temperature (ice cold hands and feet), at times difficulty breathing and pain in the chest, heart palpitations, night cold sweats, muscle spasms, swelling of the eyelids and face, pain in her back, neuropathic pain in extremities, extreme sensitivity to mosquito bites (also a result of the disease).   



Due to the immunodeficiency, Agata gets sick regularly and is very prone to systemic infections. From battling a shingles infection twice in the last 2 years, dealing with several other systemic viral infections to now coping with dangerous levels of lead and mercury poisoning in her body forcing her body to fight around the clock. Lastly has been diagnosed with small fiber neuropathy and carpal tunnel in her hands. 

She has lost over 50lbs in the past few months, unintentionally. Her body has not been able to control off the virus for years and her health is disintegrating rapidly. Unfortunately, she is no longer able to afford the much needed treatment that can save her life. A treatment which could help her fight off the chronically active Epstein Barr virus is a Stem Cell Transplant which is not covered by insurance.



For months, she has been undergoing very intense treatment with semi-weekly IVs. This IV treatment is also not covered by insurance and costs $1,500 a week out of pocket. Her treatment at the clinic also consists of Epigenetic testing, other blood testing, blood transfusions, ozone therapy, appointments with the clinician, medications and supplements to help her body fight off the illness. Agata is responsible to cover all of the costs for this life-saving treatment. Additionally she now requires 3 more surgeries on her spinal cord. The total cost of her medical treatment comes to over $110,000. 




All of the medical expenses have caused a tremendous amount of financial strain and that is why we are asking for your help. Any donation will greatly improve Agata’s quality (and length) of life. She greatly appreciates any support. If you are unable to make a donation but wish to help, please help us spread the word by sharing this page on your social media and in your circle (Please use the hashtag #ImTeamAgata). Additionally, any support is so greatly appreciated, (example: if you have any medical mobility devices you wish to donate) please do so :) 



Please note that your donation is protected by the GoFundMe Guarantee.

Where are the donations allocated?

Stem Cell Transplant (Not covered by insurance) + hospital cost-        $25,000
Surgery 1 - Co-pays/hospital costs, transportation, post surgical care, rehab. - $5,000
Surgery 2 - Co-pays/hospital costs, transportation, post surgical care, rehab. - $10,000
Surgery 3 - Co-pays/hospital costs, transportation, post surgical care, rehab. - $10,000
Treatment (Not covered by Insurance) - including semi-weekly IV treatments, medication, blood transfusions, blood testing $55,000
Ketamine Compound Cream - 100$ a month = $1,200 for a year supply
Ice Therapy (Game Ready Recovery Machine) $3,000
Game Ready Attachments - hand, back, leg… $475 each = $1,425
Tinnitus Hearing Aid - $300
Mobility Aid for Daily Assistance and Post Surgical Recovery - $300 (Shower chair, bed support devices, crutches, walker)

TOTAL = $ 111,225


Some information about the most needed medical supplies, mobility aids and post recovery devices listed above:  

Hearing aid: Due to the nerve damage in Agata’s ear canal from one of the shingles infection, she now requires an aid to make everyday sounds a little more comfortable to be around. Currently, noise (people talking, television, vacuum etc.) can cause her a lot of nerve pain making any social situation uncomfortable. Also the nerve damage causes constant tinnitus (ringing in the ear) which a hearing aid would help with tremendously. The cost of a hearing aid is about 400$.

Walker: Having a severe chronic illness has left Agata in constant exhaustion and weakness as her body is using all of its resources to fight against the often life-threatening virus. Being in constant excruciating pain also takes a tremendous toll on her ability to walk short distances, stand for more than 10 minutes at a time and balance.  A walker would make leaving the house a lot easier and safer. 

Also some much needed supplies include: ice packs, a shower chair as her existing one is broken, bathroom and shower aids for safer post recovery. 




How can you help?

Any donation will greatly improve Agata’s quality (and length) of life. She greatly appreciates any support as do I.  

If you are unable to make a donation (We totally understand!) but wish to help, please help us spread the word by sharing this page on your social media and in your circles. If you are sharing this campaign on social media, please use the hashtag #ImTeamAgata.

If would like to help with medical supplies, please visit Agata’s Amazon wish list where you can find the list of the supplies she needs for daily living and post-surgical recovery. Medical Supplies List on Amazon (https://www.amazon.com/hz/wishlist/ls/5QAYWUBHSQ5Y?ref_=wl_share)


Will donors receive updates about Agata’s journey?

Yes! Agata will be consistently posting updates about her medical journey and how helpful your donations have been to her well-being. She will be posting updates on this page as well as on her social media where she has been sharing her medical journey thus far. Additionally, she will be starting a newsletter or even possibly Youtube channel where she will be able to share about how your donation have been allocated. If you wish to be added to the newsletter please email Agata at: [email redacted]. Please feel free to email her with any questions about the campaign or how you can help.

Agata will also thank each donor individually for their donation.



Final thoughts

I have watched my friend deteriorate, yet her strength, determination, positive attitude and grace inspires me and so many who know her. I am confident that together we can make Agata’s life a little easier as I know she would have done it for us. From the bottom of our hearts, thank you so much for your kindness. 

With gratitude,

Bri Arden Kalikow