My Friend Jane Bell

UPDATE ON JANE'S STORY:

Things for Jane had been getting better.  Though still sick, with your help, she was able to get well enough to take a job with a local theatre group as an executive director.  But now she has caught Adenovirus (https://www.cdc.gov/adenovirus/index.html) which to the healthy person presents like a cold or flu. For her, it is ravaging her insides.  She is bleeding internally through her urinary tract and the current theory by her doctors is that it is urinary hemorrhaging caused by the virus. She has lost a lot of blood, is hypoglycemic, and is having magnesium and potassium replaced daily. She has also been cross-types for a blood transfusion. 

It has also attacked her lungs, central nervous system, digestive system, and heart. Additionally, two of her heart valves aren’t working right, and the virus has triggered an Addison’s flare and Lupus flare. She had to resign from the theatre and has currently been in and out of the hospital.  Even when they discharge her, she will need home health care. 

At the present time she is in cardiac isolation.

Her disability case is with the Department Head in the Determination Department.  He’s working hard on her case and has so far gotten Medicare part A to pay for part of her hospital admission.  She is going to end up with a monster bill. Hopefully, she expects to have Parts B/C/D in the next few weeks and a disability check to offset costs of home health and other medical needs. It is just taking longer because she has so many difficult conditions to push through the disability verification process.  

She is in financial distress as you might imagine.  If any of you could please share anything from $5 to $25 or so, it would help her in just her temporary situation.  This is temporary because once her disability is approved she will be able to maintain being on a tight budget but with insurance, as well all know is very important and necessary in this day and age. 

Thank you for your giving hearts. 

 




I am doing this for my friend Jane and sharing her story reaching out to our community for help.  

Patti Sutherland
Tampa, Florida USA

Jane's Story:

#IAMJane

I was born with a birth defect caused from my father's exposure to Agent Orange during his Air Force service in Vietnam. I have never not been sick. By the age of two I was diagnosed with Chronic Kidney Disease and spent so much time in the hospital I usually got the same room. I never really thought of myself as a "sick kid" because I didn't know anything else. Being ill was my normal. When I was 11 I had a surgery to correct the birth defect in hopes of saving my native kidneys. During the surgery, the doctors discovered that my native kidneys were already deeply scarred and permanently damaged. The doctors told my parents my life expectancy was short, (22 years they guessed) and the best thing they could do was focus on quality of life. I never did learn how to live like a sick person. When I wasn't in the hospital, I went to school, was a child advocate for better health care, created art, and traveled in my late teens as an inspirational speaker for kidney disease awareness.

When I was 20 and in college, my father was laid off from his job and lost our family health insurance. This was before ACA pre-existing Protections, losing coverage meant that my pre-existing condition didn't have to be covered. I moved to New Orleans where there was supposed to be better health programs and I worked three jobs to pay for medical treatment for my kidney disease.

In February of 2001, I woke up to legs swollen three times their normal size. Tests revealed that my native kidneys had less than 5% of function. My parents drove through the night to gather me up and bring me home to Lakeland. No sooner did we pull in the driveway of my parents home  than my body gave out. I was 22 years old as my head hit the floor, my heart was beating less than 40 beats a minute, and my kidneys were gone. I can still hear my mothers voice saying "Just Hold on". The ambulance came and the paramedics were able to stabilize me long enough to get me to Lakeland Regional Hospital. At the time, still uninsured, the hospital told my parents to take me home and let me die. I wasn't expected to live through the week. Because of the way the healthcare laws worked then, hospitals did not have to put you on dialysis if you were uninsured because an outside facility would not take you until you were. Though I had applied for Medicaid multiple times, I was not sick enough previously to fit into a risk pool program. By the time I was on my death bed and did meet the criteria to get Medicaid, my time had run out. The Medicaid office told my parents it would take 60 days to determine my case and I only had a few days left.

Lucky for me, I had the kind of family that rallied and would not accept no for an answer. While I drifted in-between worlds, my parents knocked on doors of congressmen, media, and anyone else who would listen, pleading for an appeal to expedite my case. The news stations came to my hospital room in my last days to tell my story and ask the community to call their congressman and plead for my life. The only thing I remember the reporter asking me during that time is if I could say anything to the people in power to determine my case what would it be. My answer was simple. I am the face of chronic illness. I could be anyone;I could be your sister, your wife, your daughter, your friend, or even you. Illness knows no boundaries. The next day I got my first dialysis treatment. Over the next few years I spent 4 hours a day, three days a week tethered to a dialysis machine to filter my blood. Despite that, I continued to work, go to school, and live an ordinary life in a non ordinary way. In June of 2003, I was blessed with the gift of life by my cousin Josh who selflessly donated a piece of his flesh to save my life.

Over the next several years, I finished school, volunteered in my community, volunteered for the American Red Cross where I deployed on disasters to the floods of New York, the hurricanes of South Florida, the fires of California, and helped with relocation of over 280 families to Polk County from Katrina. I also traveled the country speaking about my experience as a kidney transplant survivor. My new kidney was flourishing. I did so well I was able to come off nearly all of the medication, but for a small maintenance dose.

I was in what seemed to be the prime of my life. I was a Mental Health Counselor at a local clinic for disadvantaged, I founded and with my sister in law ran a grassroots mission for the local homeless, I was an active member of the American Cancer Society Cattle Barons Ball committee, an active runner who loved the beach, road trips, theatre, and my dog. I loved my life.

One particularly rainy weekend  just a few months later, I slept for 48 hours straight and turned orange. I could not get out of bed. My cousin checked in on me and called my parents who rushed me to Tampa General. When I arrived I had a sugar reading of 30, a heart rate of 179, and a blood pressure of of 50/30.

On August 26th, 2008, my mothers birthday, coded. Her voice is still the thing I'm certain that brought me back.

Over the next week many tests were run and I was diagnosed with Addison's disease. A kidney biopsy confirmed that the onset of Addison's disease, had killed my transplanted kidney. I later was diagnosed with Lupus SLE too.

This time around I had insurance and because of the ACA, I was able to get Medicaid gap coverage to get the treatment I needed to live. I spent the next few months in the hospital getting blood transfusions, going through procedures, having a new port put in for dialysis, enduring angioplasty while awake, and acclimating to my new diseases. Once again my family and friends rallied. I was loved and I knew I was going to make it.

Over the years I learned to live around my new diseases and returned to the dialysis machine 4 hours a day three times a week. I registered with LifeLink Transplant for a new kidney and began working towards a holistic life to welcome my kidney. I ran 5 miles a day, volunteered with multiple local and national organizations, took and taught art classes, worked as stage manager for the Rocky Horror Picture Show, met my now fiancé and fell in love, spent time researching and implementing a vegetarian organic lifestyle, danced on the weekends, and prepared my body for my new kidney. I had over 40 people show up to be tested for a kidney match. My brother turned out to be the closest match. We are a 6 of 6 antigen match which is as close as you can get without being twins.

My amazing brother who loves me with a love only siblings can understand, called me to tell me the good news. He promptly went through rigorous testing and was told he needed to lose 100 pounds before he could donate. My brother never flinched. Over the next year, he went on a strict diet and worked out 2 hours twice a day. Further more, he moved his entire family from Georgia to Lakeland to be near me. His wife, my sister in law stepped in as fundraiser and began coordinating community events to come up with the extra money we needed to raise for expenses not covered by insurance. The community embraced me in a big way. The Lakeland Pulse held Drag Bingo and multiple events headed by Kathryn Nevets to collect donations. The local VA hosted a poker tournament. CC's pizza and several other restaurants had spirit nights and donated proceeds. Elementary classes raised money. Wally's Pool Hall held a tournament and raised over $10K in one day.

A week after meeting our financial goal for transplant, after nearly 4 years of dialysis, 12 ports, countless hospital visits, and the donations and prayers of many, I was ready for my new life. My brother and I had a final check up and he had just 10 more pounds to lose before we could set a date.

My doctor suggested during that visit that if another kidney did pop up with a close enough match before we got our date, I should take it. My health was declining rapidly after so many years of dialysis;  and at my young age, it was likely that I might need another kidney in the future in which case, a family related close donor match would  a better fit for a third kidney than a cadaver. We believed whatever kidney I was meant to have would be mine. I just wanted to live.

On December 4, 2012, around 8 pm, my phone rang. The caller was from LifeLink and they had a kidney match.

On December 5, 2012, a 28 year old stranger saved my life. In fact, he saved 8 lives.

I was transplanted with Humphrey the kidney in the early morning and my new kidney started working immediately.

Since my last transplant, life has changed drastically. I was able to go back to work full time as a marketing director of a local non profit and enrolled  in graduate studies. I took up animal advocacy and set down roots in my community. I still work on shows, donate to local causes, and look for ways to better to world. I have never stopped believing. Most recently, I got engaged to my best friend and love of my life. My fiancé,
Daniel, a retired fireman and I made a home in the heart of downtown lakeland, and live a happy life with our three rescue dogs. We recently started repurposing found objects into art, teaching classes on artisan craft, and planning our wedding. Life couldn't be better.

In January of 2017, I suffered an episode of heart failure while at a meeting. The paramedics arrived and made it to the hospital in time to stabilize my condition, but not without consequence. After all the years of illness, my heart was tired. In order to strengthen my weakened heart, my doctor requested I take FMLA leave to enter a treatment plan to get me back in the best health I could be in. During my time out, I lost my job and with it lost my insurance. At the same time I was hospitalized, my fiancé was also hospitalized for complications of Crohn's disease. He was hospitalized 3 more times this year. With both of us in and out of the hospital and no income coming in, our savings was depleted quickly. My medication alone without insurance is close to $4500 per month. Together underinsured, our medical costs exceed more than $10K a month than not including household bills. We have managed to find programs to help with some of that cost, but the brunt of it still falls on us.

My most recent tests revealed that I am in a full Lupus and Addison's flare and that Lupus is attacking my heart and my beloved transplanted kidney.

I am in End Stage Renal Failure. With the right medical treatment it is possible that Lupus could be slowed down and my beloved kidney named Humphrey could stay functioning at this level for many years. That treatment comes with a hefty price. I have already incurred close to $100k in medical bills and the costs keep rising. I have Medicare part A and have applied for Part B and Medicaid under ESRD and am awaiting determination. My determination date is in September unless my appeal to expedite is granted.

Unfortunately, the in-between is the time that really counts. What I can or can't do now, will determine not only the quality, but the quantity of my life. We have not only depleted our own savings, but that of both of our parents, other family members, and many friends.

I can not afford my life sustaining medical treatment right now. I need help paying for medication, testing, specialty doctors, and other associated costs. My life literally depends on what happens in the next few days, weeks, and months. I could lose my kidney in a matter of days without proper treatment. I could die in a matter of weeks. If I don't find help, I will die and I will die soon.

Just a few short weeks ago I was planning my wedding, and now I am putting my affairs in order and finding myself pleading for my life.

It isn't easy to be so vulnerable with my personal hardship. People have given so much that I feel bad asking for help, even when I so desperately need it. I like to pretend I can handle it and show the outside world a smile and say that I'm okay. I'm not okay. I haven't been okay for awhile. And I think that as difficult as it is to be so open, perhaps it is cathartic too. This is real life. My real life, and just like when I was 22 and said to Rick Elmhorst, I could be anyone. I could be your wife, your daughter, your sister, or even you. I didn't ask to be sick, but I have never used being sick anything but a place to draw strength from. This is all I know. It is not sympathy I want when people hear my story, it is empathy. I am the face of chronic illness. I am what happens when you are not poor enough to qualify for programs and not wealthy enough to cover the gaps. I learned to live with my ailments and I've lived a pretty full life. I'm not ready for that life to end yet. I feel that I still have purpose here. I am stuck in the in-between. I need help. Not forever, but for now.

I need help so that I can get through the in-between and get well enough to pay it forward and give help to others.

Amanda Palmer who is one of my favorite authors wrote a book called The Art of Asking. In it she talks about letting go of pride and sharing the burden of living as a community. She talks about asking for what you need and trusting that your tribe will rally for you. I know not everyone can give. I see so many stories like mine that I wish I could give to. If you can't give though, you can share. You can help me get my story out there so that someone may come across it and feel compelled to answer my ask. My ask is both complex, yet so simple, I want to live. I'm asking you to help me.

With all my gratitude,

Jane Bell

Donations

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  • Monica Drake 
    • $100 
    • 35 mos
  • Brian Bennett 
    • $200 
    • 35 mos
  • Jonathan Paz 
    • $50 
    • 35 mos
  • Anonymous 
    • $10 
    • 35 mos
  • vivian jones 
    • $100 
    • 36 mos
See all

Organizer and beneficiary

Patti Sutherland 
Organizer
Valrico, FL
Jane Bell 
Beneficiary
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