Needy Accident Victim in Oakland,CA
Donation protected
Hi, my name is Cheryl Giuliano Rubinstein. I have End-Stage Renal Disease (ESRD) and require hemodialysis treatments several times a week. If I don’t get my treatments regularly, I end up in the hospital. I’m reaching out to my friends and family for help staying in our apartment, and getting the medications and treatments I need.
I was an activist for many years, to bring attention and support for the disabled, against bullying and domestic violence, and for fat acceptance. I feel like things are better now for these groups, and I’d like to think that doing what I did to help had some positive impact.
My ESRD, as well as other conditions, including CHF, started a few years ago. I began to put on weight, but didn’t know why. My doctor at the time had a blind spot about weight (she had her own body issues) and didn’t catch on to the fact that several medical problems were causing me to retain water, which strained my kidneys, which backed up fluid in my lungs, which strained my heart function, which made it difficult to exercise; this became a vicious circle that could have been avoided—But here I am.
Last summer, I started dialysis on an emergency basis, with a temporary shunt in my chest, and surgery to my arm for a permanent dialysis access point. Because of the surgeries, I wasn’t able to climb the stairs to our second floor apartment. My HMO said, “No problem, we’ll provide non-emergency ambulances and personnel to get you downstairs and out to dialysis, and then back upstairs again—Free!” For a while, this worked fine, but then an ambulance crew dropped my gurney, with me strapped in, out from the back of the ambulance. My goodness, did that hurt, but thank goodness, besides a lot of soft-tissue pain, no life-threatening injuries.
Later that week, another ambulance crew scratched up our hardwood floor when they used their equipment improperly. At first, they took responsibility, but in a few days, my HMO called to say that their hands were tied, no ambulance companies would carry me up and down my stairs (did you catch that? The problems had nothing to do with stairs, but the stairs were a more convenient excuse to deny me benefits), and if I wanted dialysis (WTH?), I had to call 911 and go to the ER. Another long hospital visit.
My HMO decided that because they couldn’t send me home (2nd floor with no help), they had to send me to a nursing home where ambulance crews would be able to take me to dialysis. I don’t even want to remember the hell that was, living in nursing homes for 4 months, including a really severe ambulance crew drop of my gurney, which flipped over and ended with my face against the blacktop, another hospitalization, PTSD, mild traumatic brain injury, some hearing loss, etc.
Finally, I was able to leave the nursing home, but only because we signed a new lease, at a 46% rent increase, for a downstairs apartment in our same building; it was either that or start to owe $900/day to the nursing home.
Fortunately for my health, I have a great doctor now, one who does everything he can for me, but the HMO won’t pay for everything he prescribes, which, combined with the huge increase in rent, puts us in the red every month.
I wish I could say that that was all of it, but it isn’t. Our family lived in the same little 2nd floor apartment for 10 years. It was cramped, but it was our home and we had lots of happiness there.
You may be thinking, Lawsuit -> Payday! Unfortunately, in California, insurance companies own the legislature, and there’s a cap on awards that’s designed to make litigation unproductive - the projected legal costs exceed the award amount, so most lawyers won’t even touch a case like mine.
So here we are, paying above-market rent, and doing what we can despite burnout, stress, etc., fighting the good fight. We can’t really afford the fight, but neither can we afford to lose it, or drop out of it.
With your help, we can:
- Make the rent
- Buy meds
- Pay utilities (including oxygen concentrator, dialysis machines, lymphatic pump, and phone/internet to keep in touch)
- Keep fighting
My mom brought me up to be a fighter.
She taught me by example, that you must
Fight for yourself, and that you must
Fight for others. Now, she’s gone, and I’m still
Making her proud, every day.
Please help us keep life together as we figure out how to continue helping ourselves, so we can get back to fighting for all of us.
I was an activist for many years, to bring attention and support for the disabled, against bullying and domestic violence, and for fat acceptance. I feel like things are better now for these groups, and I’d like to think that doing what I did to help had some positive impact.
My ESRD, as well as other conditions, including CHF, started a few years ago. I began to put on weight, but didn’t know why. My doctor at the time had a blind spot about weight (she had her own body issues) and didn’t catch on to the fact that several medical problems were causing me to retain water, which strained my kidneys, which backed up fluid in my lungs, which strained my heart function, which made it difficult to exercise; this became a vicious circle that could have been avoided—But here I am.
Last summer, I started dialysis on an emergency basis, with a temporary shunt in my chest, and surgery to my arm for a permanent dialysis access point. Because of the surgeries, I wasn’t able to climb the stairs to our second floor apartment. My HMO said, “No problem, we’ll provide non-emergency ambulances and personnel to get you downstairs and out to dialysis, and then back upstairs again—Free!” For a while, this worked fine, but then an ambulance crew dropped my gurney, with me strapped in, out from the back of the ambulance. My goodness, did that hurt, but thank goodness, besides a lot of soft-tissue pain, no life-threatening injuries.
Later that week, another ambulance crew scratched up our hardwood floor when they used their equipment improperly. At first, they took responsibility, but in a few days, my HMO called to say that their hands were tied, no ambulance companies would carry me up and down my stairs (did you catch that? The problems had nothing to do with stairs, but the stairs were a more convenient excuse to deny me benefits), and if I wanted dialysis (WTH?), I had to call 911 and go to the ER. Another long hospital visit.
My HMO decided that because they couldn’t send me home (2nd floor with no help), they had to send me to a nursing home where ambulance crews would be able to take me to dialysis. I don’t even want to remember the hell that was, living in nursing homes for 4 months, including a really severe ambulance crew drop of my gurney, which flipped over and ended with my face against the blacktop, another hospitalization, PTSD, mild traumatic brain injury, some hearing loss, etc.
Finally, I was able to leave the nursing home, but only because we signed a new lease, at a 46% rent increase, for a downstairs apartment in our same building; it was either that or start to owe $900/day to the nursing home.
Fortunately for my health, I have a great doctor now, one who does everything he can for me, but the HMO won’t pay for everything he prescribes, which, combined with the huge increase in rent, puts us in the red every month.
I wish I could say that that was all of it, but it isn’t. Our family lived in the same little 2nd floor apartment for 10 years. It was cramped, but it was our home and we had lots of happiness there.
You may be thinking, Lawsuit -> Payday! Unfortunately, in California, insurance companies own the legislature, and there’s a cap on awards that’s designed to make litigation unproductive - the projected legal costs exceed the award amount, so most lawyers won’t even touch a case like mine.
So here we are, paying above-market rent, and doing what we can despite burnout, stress, etc., fighting the good fight. We can’t really afford the fight, but neither can we afford to lose it, or drop out of it.
With your help, we can:
- Make the rent
- Buy meds
- Pay utilities (including oxygen concentrator, dialysis machines, lymphatic pump, and phone/internet to keep in touch)
- Keep fighting
My mom brought me up to be a fighter.
She taught me by example, that you must
Fight for yourself, and that you must
Fight for others. Now, she’s gone, and I’m still
Making her proud, every day.
Please help us keep life together as we figure out how to continue helping ourselves, so we can get back to fighting for all of us.
Organizer
Cheryl Giuliano Rubinstein
Organizer
Oakland, CA
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