Seems like every little thing about this transition is going to be a struggle. We got in a knock down drag out with the new dialysis clinic last night. The Las Cruces clinic has told the new clinic in Las Vegas that James refused all vaccinations and also refused to sign the refusal form. Thus, he has had no vaccinations in the last 12 months.
Before we left, in early December, the Las Cruces clinic informed us that to be in a new clinic even for vacation, he would have to have a new recent set of vaccinations and a TB test. He did that. We received copies of the paperwork.
Now, the Las Vegas clinic informs us that it is not necessary for a transient (their insulting sort of word to indicate someone on vacation) to have a recent set of vaccinations and a TB test. And that they received no records of such having been done.
We were told the paperwork given to us by the Las Cruces clinic is not proof of vaccination (they handed it to us saying "here is your proof of vaccination") – since the clinic now denies giving him any such vaccinations.
We went through a back and forth; "Well why would the old clinic lie?" "Well why would we lie? Do you think I WANT him to die of the flu?”
If the patient says one thing – and has it backed up with paperwork from the clinic – but the clinic says something else – then the patient is lying. Period.
So he is going through a whole new set of vaccs - which he went through less than a month ago. This will be his third round of vaccines in a year - most of them are due yearly, one is supposed to be every five years. That's right - every five years. But he has had it THREE TIMES this year because we have "no proof" he has had it previously.
Then they tell us that according to the records from the old clinic* he has not had a full series of Hep B vaccs in TWO YEARS and that it is OUR FAULT because WE MISSED SO MANY APPOINTMENTS.
During those two years, the ONLY time we missed an appointment was when he was IN THE HOSPITAL. Oh, and isn't it the responsibility of the CLINIC to keep track of that and make sure that he does get a full series at some point?
But no, it is our fault. And because of that he has to now be dialysized IN ISOLATION. So because of that we lose our nice M/W/F afternoon appointment, have to change to a morning appointment which completely disrupts his life, with a new tech, and a new nurse who don't know him at all.
We will see how it goes but I expect this to have a significant and very detrimental effect on his qualify of life since he will miss two meals and come home at 3 pm exhausted and sick, probably nap and disrupt his sleep pattern for, well, however long it takes before we can get back to an afternoon chair.
I will be turning the old clinic in to ESRD Network for the two years of no Hep B protection today also.
We had the entire argument standing at the counter window with me leaning on a walker.
Then they brought me the financial papers Because, you know, he is a "new" dialysis patient. Apparently a "transfer" means nothing inside Fresenius, you have to start over as if you never walked into a dialysis clinic before.
They are literally asking when the date of his first dialysis was (2010).
We are signing today to say we will be financially responsible for the 20% of the $250,000 per fiscal quarter payments for dialysis that Medicaid in Nevada says they don't have to cover - because his income is too high. And that we understand that if we cannot pay, he will not receive dialysis.
Do the math on that one. If we had no other living expenses at all, and could apply every dime of his disability income to only dialysis – he will still die.
This has changed since the first of this year. Used to be Medicaid/Medicare covered ALL medical expenses for dialysis patients by LAW, by an ACT OF CONGRESS signed in 1975.
But apparently that changed the first of this year. I'm hearing from a lot of people in the dialysis community that people are being refused dialysis until they are in dire straits - then they go to the ER and get one treatment and are kicked back out on the street until they are near death - then one more treatment. Needless to say - people tend to die in less than a year on that program. This includes veterans, who are denied treatment by Medicare/Medicaid because they “should” have veterans benefits. Then the VA denies them treatment or places hurdle after hurdle in front of them until they die from lack of dialysis.
Thank you, Mr. Trump and Republicans. I wonder how many will die before the citizens of this country wake up? Or does nobody care anymore. I see a lot of attitude of "you people deserve to die" as if we ran out to "catch" kidney disease so we could get disability. Seriously? You cannot fake kidney disease. And no one really seriously thinks someone would do dialysis JUST to get disability and health care??? Really?
I know cancer patients and others with chronic, debilitating, and fatal illnesses have been on their own all along. I happen to think that is very wrong, and someone should have gotten their shit together and gone to Congress and gotten all forms of cancer (among other illnesses) fully covered end to end like dialysis used to be. But I can see why others would resent the dialysis community and maybe even enough to want us all to die.
Well, looks like you get your wish.
But why is this your wish?
Do you think your income will increase when we are dead? Like do you expect a $100 bonus in the mail from your President each time a disabled person dies from lack of readily available medical care?
When you, or your mother, or your spouse succumbs to kidney disease, as a steadily increasing number of people around the world are expected to do in the coming years, please remember how you thought kidney disease patients deserved to die.
For the rest of you, who are still healthy, and who care deeply and compassionately about this – I’m not sure what to ask you to do. Contribute to the Kidney Patients Fund or AAKP maybe. Call your government representatives and ask WTF. Vote Democrat. Maybe get crazy and organize and go to Congress as was done in 1975 by the medical community. Back when we had healers not millionaire corporations providing medical care. Help out the people in your own circle of family and friends with their battles if you can. I can testify to how much help that can be, and how deeply appreciated it is. That might be the best thing you can possibly do, really.
Because right now, we are involved in a minute to minute every single day battle for every treatment, every medication, every minute of his life and don’t’ really have time to get all political.
By the way – this is part of the plan. If people are struggling to find their next meal – they don’t have the time or freedom to be political. Something you should think about if you are not yet fighting this fight and have time and money to spare.
I know you are young and healthy and have a great job and you've got the world by the tail.
Believe it or not, we were that age once, and we had all that and more. And now it is all gone - not because we did anything wrong but because the billionaires took every last dime away one way or another. They will do it to you, too. Don't think you are immune.
And if you do, that's fine. I mean, karma works. The day will come when your doctor says, "I'm sorry but..." and you learn about all the treatments that you cannot afford and do not qualify for help for. On your death bed, remember how arrogant you are today.