My longtime friend Jill Brenneman is in dire need of financial help due a terminal medical condition. I’ve mentioned Jill on here now and again. She was part of SWOP-East and has an unusual history. Part of that history can be read at Sex Workers Without Borders, part of that over at Bound, not Gagged and part of it over at Maggie McNeill’s blog.
Jill has made the incredible journey from sex trafficking victim, to anti-prostitution activist, to sex worker rights activist. She is responsible for bringing many sex workers into activism (including me). She’s a living example of the harm our current laws cause to both trafficking victims and sex workers. She’s had a long speaking career, engaging and challenging her audiences, often opening minds.
Now she is slowly dying and needs our help. Her needs are simple but necessary. We’ve started a fundraising campaign for her at Indiegogo. Anything you can contribute helps. Any way you can pass this along to others helps. Anything that can be done to ease her suffering helps. The fund-raising goal is modest and if we can exceed it, so much the better. It goes to making what’s rest of her life that much easier.
In her own words, below, she fully explains her medical condition. There is no cure. Though she has Medicare, they take every opportunity to deny her coverage and she has co-pays for all of her health care, which is extensive right now. Obviously, she cannot work in any capacity. She can barely stand up and walk.
I’ve been watching her degrade since April and in mid-May she received her terminal diagnosis. I’ve done what I can to help her but I’m one person and live far from her. Thank you in advance for helping my friend.
I’m Jill Brenneman. I am a long time activist for sex worker human rights. Unfortunately, today I am asking for your help due to catastrophic medical issues.
Just before Easter 2014 I began experiencing sharp back pain. The pain ultimately was related to a chronic health issue. Since 2007, I have been prone to Deep Vein Thrombosis, DVTs in the legs from long flights. In 2007 the first DVT that I suffered traveled to my lung and became lodged there. Once a blood clot reaches the lungs it becomes a Pulmonary Embolism which is highly life-threatening. It is treated with blood thinners.
In 2010 a much larger Pulmonary embolism formed that left me hospitalized in critical condition for days. To protect me from further risk doctors inserted a filter in the Inferior Vena Cava Vein to catch the clots before they get to the lungs. The filter was intended to be temporary but my health insurance expired before it could be removed. I was supposed to stay on blood thinners for life after 2010 but again lack of health insurance made that impossible.
Just before Easter 2014 I developed acute back pain and went to a local hospital ER. I was also constantly fainting and had acute pain in my thigh. I assumed the pain was perhaps causing the fainting. I was admitted to the hospital on Easter of 2014 but the admitting physician was obviously misogynist and biased. He noticed on my prescription profile that I am on anti depressants for depression. I could tell by the line of questioning this was a problem for him. He ordered tests be run to determine if I had another DVT. Those tests came back positive for a DVT and the medication was administered immediately. I was also hooked up to IV. The protocol for a DVT is a short term large quantity of IV be injected to try to break up the clot. The biased doctor had other ideas though. He was very focused on the fact that I am on psych meds and that he feels that women are over reliant on medications because we don’t have men’s threshold for pain.
For the next three days psychiatrists were sent to my room. They asked me questions from the Minnesota MultiPhasic Inventory Test. They were fixated on whether I had a problem with wanting to start fires as the topic kept being brought up. They ignored that I am afraid of fire and barely light candles. They also ignored my pleas to stop the IV. I was bloating to an extreme to the point that it was more painful than my back, which remained unaddressed. My complaints were dismissed as something the MD would have to review and at that time my care was being handled by Psychiatrists.
Finally after 3.5 days I was discharged abruptly. The discharging MD told me that I had been misinformed and did not have a blood clot. I challenged her as to why I would have been given an injection of medication for blood clots literally five minutes before she came in to discharge me but she blew off the question. I showed her how bloated I was but she ignored that as well and quickly disappeared. I was discharged with no medication and no diagnosis.
I got home very weak, in excruciating pain, with no answer to my back pain and found that I had gained 38 lbs in 3.5 days. I assumed it was water weight and would quickly be excreted by my urinary system. Except it wasn’t. I was no longer able to walk and barely capable of sitting up. I was extremely short of breath and a few days later weighed 48lbs more since admission. I had an ambulance take me to a different hospital.
The new hospital ran tests and quickly determined that the previous hospital had flooded me with so much fluid and kept me entirely confined to bed to the point that the fluid weight crushed my circulatory system and shut down the veins bringing blood back from my feet to my heart. Those veins were entirely blocked as the blood had literally dried in the veins and turned into enormous clots stretching from both feet to the filter in my chest. I learned in that hospital visit that the cause of my back pain was that a piece of the titanium filter had broken off and was lodged in my spine and thus the filter was very weak.
After consulting with multiple physicians, surgeons, vascular specialists, internists and primary care, I learned that there is no treatment for the catastrophically devastated veins. They are totally blocked and will be for life. There is no treatment for this because it is so massive in size effecting 1/2 my body. There is no surgery and no medication treatment to repair this. Blood is minimally flowing through peripheral veins but those are clotting too and extremely painful. There is no longer anything prohibiting clots from getting to my lungs. Each clot in the lungs has a 1 in 3 fatality risk. All that can be done is take blood thinners to try to prevent new clots and pain killers.
After meeting with all of the doctors the consensus is that this is terminal, aka fatal. I have not been given any particular time limit. The broken filter could give way and allow the whole process into my lungs at any time and be immediately fatal, or my body could slowly shut down over a period of weeks to a few months. Or I could get absurdly lucky with a perfect case allowing for perhaps a year.
However, since learning this in mid-May my condition has continued to worsen. The feared recurrence of blood clots in my lungs has now happened as a new clot has formed. I learned this week that the cause of my constant passing out and acute chest pain is a clot in my heart. Because of the blood clot in my lungs they can not send me into emergency surgery to clear the clot in my heart. Perhaps that can be done in a month if the clot in my lungs breaks up and assuming nothing else goes wrong.
My family is not supportive, my income is a small amount of Social Security Disability and partial Medicare coverage. While I qualify for full Medicaid coverage they have put up every possible roadblock to accessing my benefits and revoke my coverage every time I’m admitted to the hospital. At this point my health is very fragile and degrading quickly. My friends live a significant distance from me. If I become well enough to travel I can stay with them but right now can not travel. With a terminal prognosis and badly degrading condition I am in dire straights.
Thus I am asking you, if you can please donate any amount, no matter how small, it would help me afford to pay the large co-pays for doctor’s visits, medications, food, shelter, rides from taxi services rather than taking the high risk of driving. While I have never been one to easily ask for help I desperately could use any donation, no matter how small at this point. While my condition is terminal and I am not expected to live much longer any help that can be given is help that can perhaps give me a bit more time or assist with my burial costs once I pass. If you can help me at this time of need, I would be very grateful.
Photo of Jill and me at the post office after we mailed condoms to Chile for “Pledging Action”, 2011.
This post “help an activist” by Amanda Brooks is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Based on a work at http://www.texasgoldengirl.com/afterhours/help-jill-brenneman/.