Post-Surgery Recovery Fund
Donation protected
We found out how far along my husband, Greg, is in his illness from his ascites crisis which required hospitalization 8.03.19 to 8.09.19 at John Muir Hospital/ Walnut Creek.
The doctors there contacted UCSF (about 45 miles away) so Greg could be evaluated right away for his liver problems from having Hep C + B.
But being accepted into any Liver Transplant program is now based on the numbers.
Not on how sick you are, but rather on what are the odds you will survive at the 1-year mark and the 5-year mark, because the rating of the actual clinic where you get the new liver put in, their ratings are literally based on their patients' survival.
It's rather like Darwin meets medicine in the most foul and yes, commercial way. But who are we to complain? We are just fortunate to even be given the chance.
Those few who are chosen, though, they have to work to get into the program. It's not an automatic thing, like other kinds of health care. Here you have to earn it. One way it was put to us: you have to be sick enough to need a new liver but in every other aspect you need to be healthy enough to survive a very, very grueling procedure. You can Google this issue. There's even a federal lawsuit trying to overturn the current way transplant patients are evaluated in all liver transplant units nationwide.
See, it's not just the MELD number (which is a formula based on three blood tests which show how non-functional the liver has become), but just as much, it is also about what kind of resources do you have to be able to have a good outcome for THEM, the Liver Transplant Unit.
The instructions you receive before the 1st visit directly allude to this when they say you will not be accepted to the program if ... and that becomes a long list at the actual meeting. Your financials, your home, your relationships, your support system, your vulnerabilities, your resources. Where else in medicine does this happen? I find it cold and cruel but what can I do but try to pull together ALL they need me to show I am capable of? For sure, I will turn to strangers for help, to family and friends who forgot me long ago. I will do anything to save my husband.
Someone has to be willing to show up 100% at this meeting Day #1 (which our adult daughter did) and that person must commit to the transplant team that they are committed to giving up at least six weeks for care of the patient (and their liver donor, too - so they will need a separate caregiver at home dedicated just for them.)
Not only must we have 2 people willing to help us post-hospital (and the transplant team will have to train them, too), we must also show we have enough money (living expenses during recovery) saved up so we can do this massive undertaking.
We have 90-mile round trip to get pre-transplant medical care done at UCSF and Zuckerberg Hospital in San Francisco. Our SUV is not reliable so we take public transportation and it's harder and harder for Greg. We need to be able to move him in comfort in our own vehicle, leaving before the traffic gets going.
So there's part 1 leading into part 2 of this fundraiser trying to explain the details of what's holding up this procedure. We are 100% committed to getting everything going. Since we don't have ANY savings (due to life on SSI couple's budget of $1589 ... I have Lyme Disease and mobility problems since 2017 ... he has been fully disabled since 2012), this GoFundMe approach is what the UCSF's Liver Transplant Unit's social worker suggested doing.
This is the documentation from John Muir hospital, the August MRI. This is what UCSF Liver Transplant Unit used on 9.16.19 when we were told it is cancer. Multiple leisons. Also informed that a transplant was the only option due to cirrhosis.
Nonetheless, it was a shock to get an appointment from an end-of-life doctor (above).
The above is a letter that's going out to a local charity that they required to be signed by his primary care physician. But to be honest, I don't see them helping us because here they say no help with vehicles or medical care.
So this is part two of our fundraiser because our vehicles, an RV needs some work (as does our small SUV --- minor) so we can move to San Francisco in it (the RV) to get this procedure done.
Above is our home-on-wheels: the RV (and our SUV) a 27' Class C motor home, which we bought when my husband got on SSI in 2012. It has issues that mean we can't undertake a full-scale recovery (I honestly believe our home will be inspected at some point by the "team").
These issues would be:
* occasionally (alarmingly) the RV quits...no apparent reason...won't start for about 5 to 8 minutes then it will turn over...that is so incredibly stressful to a sick man. He frets constantly about how I will cope when I am a widow. Please help me to STOP that dialogue. So a mega-tune-up first and foremost;
*plumbing is broke between shower and kitchen so no running water;
*the broken plumbing flooded the middle of the RV and it weakened flooring so now there are holes in floor so repair job for that 6 foot long area - not the whole floor;
*where the floor is broken, sits the extremely heavy (non-working) refrigerator and I am afraid of it so we are unable to go anywhere else but this park (nice but has zero utilities) simply because of my anxiety over driving with this problem;
*roof leaks in six places (bucket system working fine but so tiresome);
*two new tires needed up front (all 4 in back are new in July of last year):
The SUV has a battery connection problem and even though we just replaced the fuel pump (and filter) which quit a week after Greg got the diagnosis...there is a starter problem...and something draining the battery so we have to unhook it every night.
In the photos below, that's a friend in the photos working to repairing it roadside with us:
Above, Greg putting the tire back on, less than a week after finding out about the liver cancer. Below, me seeing him at work!
Aaaauuuggghhh! This man! 26 years we have been married and dear Lord, I need at least 26 more.
Us with our newborn baby (1996) just days before we left Belle River, Louisiana for California in a Bluebird schoolbus. My book of essays about that is self-published on Amazon or as an eBook from https://ramonamayon.selz.com
Also, it's natural to expect everybody to want know the back story of how folks get in peril, so here goes:
In 2013, we moved from San Francisco (where we lived 17 years) but unfortunately, we unsuspectingly moved into an Illegal mobilehome park at 701 Wilbur Avenue, Antioch 94509 which has been ignored for years by City of Antioch Council, so when it came under development (approved by this city council Sept 7, 2016) basically they could care less about the usual rights of tenants of a man who had no statutory right to rent to people living in RVs (there were 15 of us when we left in 2018). We have asked the City for help. They refused (in writing) on the grounds of I'm not really sure ... thus lawsuit(s).
However my daughter asked me to add a bit more to this paragraph (because she has a hankering to go to the media about this real estate travesty), so I (sorta) agreed to write more about this fight with the City Council and their flat refusal to help us ... I mean, we fit every category for CDBG-sponspered emergency re-housing assistance...seniors on a fixed income, husband with an acute (documented) illness, wife disabled enough to be approved on first try in only 11 months by SSI (2017) and yes, by their definition, we are homeless RV dwellers (rent here is by the day and as mentioned, zero utilities, and we can only stay a certain amount of days every month so we stay on the streets of Antioch sometimes, in the industrial areas, of course).
I thought about what she wanted me to say, and how little I want to say publically, but as I thought about the stack of legal briefs I have written since Jan 2018, two years worth and still no rights. Nowhere close to being recognized as having rights.
Why do I know this to be the case? When sued, when confronted by evidence of a malfunction in municipal government, what does Antioch's City Council do? They call the remaining 7 RV-based households still out there on the site a "homeless community" and opened up the City Budget, wrote in a new line called "Homeless Services " and using General Funds no less (not CBDG monies which would normally pay) put $150,000 in there and are hiring a consultant to arrange something new and wonderful for the homeless, of whom Greg and I are now counted after five years of paying rent properly, thinking we were real residents.
What is curious, though, how did the landlord get his mouth in shape to come back to the council and tell the that $150,000 isn't enough and that it should be "a half a million" and lo and behold if at the very next meeting, the council pulls $400K+ out of somewhere and add most of it to the new buget for "Safe Parking lot for RVs, motel vouchers, laundry servies, portable showers, dumpsters, sharps boxes". Incredibly that is happening and I know my daughter thinks I should say our lawsuit and my very angry series of emails in August and September were the causation.
All I will say is that I will believe it when I see it. Tricksters, the entire lot. But yeah, thats what I do with my spare time. Trying (pro se, that is: self-repesented) to force our housing rights to be recognized.
More @ www.oldwilburvineyards.wordpress.com
One last thing. Greg quit drinking in 1999 when we found out he had Hep C. He quit smoking in 2007. He has been under the care of the Castro Mission Health Clinic in San Francisco since 1998. Continuing care which means a lot of blood tests and constant monitoring of his former vices. He really has reformed his habits. He rarely even eats chocolate anymore.
Thank you so much for reading this and considering making a donation to our repairs and recovery fund.
Greg and Ramona Mayon
Mailing address:
3377 Deer Valley Road #278 Antioch, Cali 94531
Next move is to drive every single day (except Sundays, of course) to a different town in the East Bay and stand in front of their local version of Starbucks for at least an hour with this sign I ordered today because I just don't know enough people to do it the normal way.
While I do this, I will feel no shame because I will be praying ceaselessly for the Holy Ghost to give us healing through the grace of God and by the blood of Jesus Christ. ♥️
♥️ Greg Mayon in San Francisco in 2015 ♥️
The doctors there contacted UCSF (about 45 miles away) so Greg could be evaluated right away for his liver problems from having Hep C + B.
But being accepted into any Liver Transplant program is now based on the numbers.
Not on how sick you are, but rather on what are the odds you will survive at the 1-year mark and the 5-year mark, because the rating of the actual clinic where you get the new liver put in, their ratings are literally based on their patients' survival.
It's rather like Darwin meets medicine in the most foul and yes, commercial way. But who are we to complain? We are just fortunate to even be given the chance.
Those few who are chosen, though, they have to work to get into the program. It's not an automatic thing, like other kinds of health care. Here you have to earn it. One way it was put to us: you have to be sick enough to need a new liver but in every other aspect you need to be healthy enough to survive a very, very grueling procedure. You can Google this issue. There's even a federal lawsuit trying to overturn the current way transplant patients are evaluated in all liver transplant units nationwide.
See, it's not just the MELD number (which is a formula based on three blood tests which show how non-functional the liver has become), but just as much, it is also about what kind of resources do you have to be able to have a good outcome for THEM, the Liver Transplant Unit.
The instructions you receive before the 1st visit directly allude to this when they say you will not be accepted to the program if ... and that becomes a long list at the actual meeting. Your financials, your home, your relationships, your support system, your vulnerabilities, your resources. Where else in medicine does this happen? I find it cold and cruel but what can I do but try to pull together ALL they need me to show I am capable of? For sure, I will turn to strangers for help, to family and friends who forgot me long ago. I will do anything to save my husband.
Someone has to be willing to show up 100% at this meeting Day #1 (which our adult daughter did) and that person must commit to the transplant team that they are committed to giving up at least six weeks for care of the patient (and their liver donor, too - so they will need a separate caregiver at home dedicated just for them.)
Not only must we have 2 people willing to help us post-hospital (and the transplant team will have to train them, too), we must also show we have enough money (living expenses during recovery) saved up so we can do this massive undertaking.
We have 90-mile round trip to get pre-transplant medical care done at UCSF and Zuckerberg Hospital in San Francisco. Our SUV is not reliable so we take public transportation and it's harder and harder for Greg. We need to be able to move him in comfort in our own vehicle, leaving before the traffic gets going.
So there's part 1 leading into part 2 of this fundraiser trying to explain the details of what's holding up this procedure. We are 100% committed to getting everything going. Since we don't have ANY savings (due to life on SSI couple's budget of $1589 ... I have Lyme Disease and mobility problems since 2017 ... he has been fully disabled since 2012), this GoFundMe approach is what the UCSF's Liver Transplant Unit's social worker suggested doing.
This is the documentation from John Muir hospital, the August MRI. This is what UCSF Liver Transplant Unit used on 9.16.19 when we were told it is cancer. Multiple leisons. Also informed that a transplant was the only option due to cirrhosis.
Nonetheless, it was a shock to get an appointment from an end-of-life doctor (above).
The above is a letter that's going out to a local charity that they required to be signed by his primary care physician. But to be honest, I don't see them helping us because here they say no help with vehicles or medical care.
So this is part two of our fundraiser because our vehicles, an RV needs some work (as does our small SUV --- minor) so we can move to San Francisco in it (the RV) to get this procedure done.
Above is our home-on-wheels: the RV (and our SUV) a 27' Class C motor home, which we bought when my husband got on SSI in 2012. It has issues that mean we can't undertake a full-scale recovery (I honestly believe our home will be inspected at some point by the "team").
These issues would be:
* occasionally (alarmingly) the RV quits...no apparent reason...won't start for about 5 to 8 minutes then it will turn over...that is so incredibly stressful to a sick man. He frets constantly about how I will cope when I am a widow. Please help me to STOP that dialogue. So a mega-tune-up first and foremost;
*plumbing is broke between shower and kitchen so no running water;
*the broken plumbing flooded the middle of the RV and it weakened flooring so now there are holes in floor so repair job for that 6 foot long area - not the whole floor;
*where the floor is broken, sits the extremely heavy (non-working) refrigerator and I am afraid of it so we are unable to go anywhere else but this park (nice but has zero utilities) simply because of my anxiety over driving with this problem;
*roof leaks in six places (bucket system working fine but so tiresome);
*two new tires needed up front (all 4 in back are new in July of last year):
The SUV has a battery connection problem and even though we just replaced the fuel pump (and filter) which quit a week after Greg got the diagnosis...there is a starter problem...and something draining the battery so we have to unhook it every night.
In the photos below, that's a friend in the photos working to repairing it roadside with us:
Above, Greg putting the tire back on, less than a week after finding out about the liver cancer. Below, me seeing him at work!
Aaaauuuggghhh! This man! 26 years we have been married and dear Lord, I need at least 26 more.
Us with our newborn baby (1996) just days before we left Belle River, Louisiana for California in a Bluebird schoolbus. My book of essays about that is self-published on Amazon or as an eBook from https://ramonamayon.selz.com
Also, it's natural to expect everybody to want know the back story of how folks get in peril, so here goes:
In 2013, we moved from San Francisco (where we lived 17 years) but unfortunately, we unsuspectingly moved into an Illegal mobilehome park at 701 Wilbur Avenue, Antioch 94509 which has been ignored for years by City of Antioch Council, so when it came under development (approved by this city council Sept 7, 2016) basically they could care less about the usual rights of tenants of a man who had no statutory right to rent to people living in RVs (there were 15 of us when we left in 2018). We have asked the City for help. They refused (in writing) on the grounds of I'm not really sure ... thus lawsuit(s).
However my daughter asked me to add a bit more to this paragraph (because she has a hankering to go to the media about this real estate travesty), so I (sorta) agreed to write more about this fight with the City Council and their flat refusal to help us ... I mean, we fit every category for CDBG-sponspered emergency re-housing assistance...seniors on a fixed income, husband with an acute (documented) illness, wife disabled enough to be approved on first try in only 11 months by SSI (2017) and yes, by their definition, we are homeless RV dwellers (rent here is by the day and as mentioned, zero utilities, and we can only stay a certain amount of days every month so we stay on the streets of Antioch sometimes, in the industrial areas, of course).
I thought about what she wanted me to say, and how little I want to say publically, but as I thought about the stack of legal briefs I have written since Jan 2018, two years worth and still no rights. Nowhere close to being recognized as having rights.
Why do I know this to be the case? When sued, when confronted by evidence of a malfunction in municipal government, what does Antioch's City Council do? They call the remaining 7 RV-based households still out there on the site a "homeless community" and opened up the City Budget, wrote in a new line called "Homeless Services " and using General Funds no less (not CBDG monies which would normally pay) put $150,000 in there and are hiring a consultant to arrange something new and wonderful for the homeless, of whom Greg and I are now counted after five years of paying rent properly, thinking we were real residents.
What is curious, though, how did the landlord get his mouth in shape to come back to the council and tell the that $150,000 isn't enough and that it should be "a half a million" and lo and behold if at the very next meeting, the council pulls $400K+ out of somewhere and add most of it to the new buget for "Safe Parking lot for RVs, motel vouchers, laundry servies, portable showers, dumpsters, sharps boxes". Incredibly that is happening and I know my daughter thinks I should say our lawsuit and my very angry series of emails in August and September were the causation.
All I will say is that I will believe it when I see it. Tricksters, the entire lot. But yeah, thats what I do with my spare time. Trying (pro se, that is: self-repesented) to force our housing rights to be recognized.
More @ www.oldwilburvineyards.wordpress.com
One last thing. Greg quit drinking in 1999 when we found out he had Hep C. He quit smoking in 2007. He has been under the care of the Castro Mission Health Clinic in San Francisco since 1998. Continuing care which means a lot of blood tests and constant monitoring of his former vices. He really has reformed his habits. He rarely even eats chocolate anymore.
Thank you so much for reading this and considering making a donation to our repairs and recovery fund.
Greg and Ramona Mayon
Mailing address:
3377 Deer Valley Road #278 Antioch, Cali 94531
Next move is to drive every single day (except Sundays, of course) to a different town in the East Bay and stand in front of their local version of Starbucks for at least an hour with this sign I ordered today because I just don't know enough people to do it the normal way.
While I do this, I will feel no shame because I will be praying ceaselessly for the Holy Ghost to give us healing through the grace of God and by the blood of Jesus Christ. ♥️
♥️ Greg Mayon in San Francisco in 2015 ♥️
Organizer
Ramona Mayon
Organizer
Antioch, CA
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