Those of you who have followed me for some time know that Kate, the love of my life, has Erdheim-Chester. She just went onto Medicade as she just turned 65. Our other insurance through the ACA paid for the treatment which is really expensive. Medicade has denied pay or any of her treatment, basically this means she will die of the disease and it will be brutal and unsightly. It has been about eight months into this when they decided not to pay. I got pissed and wrote a letter to the Hospital, I had no idea who to send it to and I picked them. "I asked them to tell me why they were sentencing my wife to death. I know this disease has presented in few people, there are just about a thousand people on the planet who have been diagnosed with this. But the fact that so few people have the disease is not a good reason for neglecting her care. Can you tell me a good reason for allowing my wife to die so you do not have to pay for the treatment." (This is not an exact word for word transcript of the letter). Yesterday we heard from the Hospital that Medicare was going to pay for all the treatment so far and cover the treatment until January next year. People please if you run into this kind of problem raise hell to get treatment. They do not want to pay and so make it hard to get the care you need, they are supposed to pay for this, and will if you shame them into it. It is their interest not to pay, make them. I do not want to hear of anyone having to go through this, advocate for yourself Please!
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6 comments
Feel free to reply to any comment by clicking the "Reply" button.wadr sounds like the Drs got to yall first--a terminal thing, imo--but fwiw, [flowin.com]
and i say again, "dead doctors don't lie" ok
"$16,000 a day"
bbyrd009
Level 7
Apr 10, 2020
0
i would ask what your wife's primary source of omega 3 is, that is an autoimmune disease right? completely curable fwiw
bbyrd009
Level 7
Apr 9, 2020
2
Thank you for all your comments. The only thing that helps with this disease is IVIG Gamogobulin G given by IV. She has a port and so does not have to find a vein every time. Everything else has been tried and Omega 3 is a supplement that she takes every day for other reasons. This disease is an immune disease in that a protein that is produced by the body is not made correctly and when the immune system finds it the response is the disease, I think. No one really knows much about this as so few people have it. In studies, IVIG is the only thing that works. She was given chemotherapy and that did not work at all. This is extremely expensive now at about $16,000,00 a day. And yes I had to sign papers that said I was responsible for paying this if the insurance company did not. I figured I was not going to let this be a limit and I could pay it off at $50.00 a month. Thanks for your responses. It helps to hear from other people as I was trying to help others.
Don't forget Essential Oils..and garlic of course..
@Charlene There is a, was a place here locally that was making aromatherapy items for pain. They were giving them to hospitals to see if they worked and they did. I will see if I can find these. They were handing these out where Kate gets her care.
@dalefvictor ok, i wish yall the best ok
"dead doctors don't lie"
This is what was elected to be our future when ever they vote an obstructionist republican fascist into office!!!
Time to eradicate all the obstructionist republican fascist and their wealthy corporate owners by imprisoning then for crimes against humanity!!!
They can afford $$$Trillions for war and bailouts for corporations who mismanage everything, do not pay taxes, give overtly over the top bonus to their management!!!
Yet, can not afford basic healthcare for us!!!
It is beyond time to stop this insane obstructionists republican fascist agenda against the people of this country!!!
of-the-mountain
Level 9
Apr 9, 2020
1
During this administration, all of these claims of not being able to afford something is total bullshit and it is proven. If we can afford to give the rich the two trillion dollars we have in the past three years paying for medical care for all is a cakewalk. Giving the rich money does nothing for the economy, this was proven when trump did his tax plan. Paying the same amount to the people who actually do the work to keep the economy going has been proven by what we are going through now. No one is spending money the commercial businesses are failing, nuf said.
Thanks, you inspired me to visit my state senator
I quit driving more than a decade ago and then my drivers license expired. Rather than study the drivers manual and take the tests to renew it, I opted for a senior ID card.
IT HAD AN EXPIRATION DATE. I should have expired by then?
yvilletom
Level 8
Apr 9, 2020
3
When i see people have a problem with a federal program, I generally advise them to contact their congressmember. If you are close enough to go to one of the local offices, go in in person and ask to speak to the person that handles that program. There are going to be forms that have to be filled out and signed, so you can save several days or even weeks in getting resolution by going in in person. That advice will have to wait until we get past the quarantine. Next best is to call the office.
glennlab
Level 10
Apr 9, 2020
3
I have these people on speed dial.
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