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    An_257443 posted:
    Hi, who ever answers this thank you in advance. If you are self employed and went on my soc sec website and it says if you are disabled you will receive 1408.00 a month. Does that mean that's it or is it that you would get40-50% of that amt. I have been so overwhelmed with all of this for my husband. Is this how it works- your gfr is low dr refers you to a vascular surgeon who gives you a fistula. Then who determines if you are able to do some work vs all of your work? What happens next? Are you referred to a doc worker to help figure it all out? I am the insurance carrier and found out today that the 2015 cost for the two of us will be 1250.00 a month. There is no way I can afford that if my husband isn't getting much. We will lose everything. We don't have much but we will have to move etc. are there any other ways to get insurance etc that will help? I realize this is a common problem. For hardworking people that live paycheck to paycheck so I am not expecting free just to be able to survive this
    ccrosthwaite54 responded:
    I'm not sure you don't want to hear this, but have you tried an insurance broker that has worked with the new medical insurances? I know that I was scared with the "Obama Care" insurance, but it has turned out to be alright. I was paying $438 a month for just myself (my husband is retired and on medicare). I'm a school bus driver (over 25 years). Under the new insurance my premium is now $49.94 monthly. Can't hurt to try. As for the disability insurance, the amount they show should be the amount that you get. Right now if I went out on disability, my amount would be just over $900.00 a month. Usually the doctor that does the surgery is the one who determines whether you can work or not and how much work you can do. However, before disability is paid, they can have you see a doctor that they also recommend. I can tell you that I was glad that I paid the insurance premiums because I ended up having some kidney issues and was hospitalized several times. Without the insurance, it would have cost us over $40,000 (which we don't have). We too have lived from paycheck to paycheck. We raised four children and paid our insurance through my husband's work. At that point the payments were over $150 weekly for a family. By the time my husband retired at the age of 70, our insurance premiums were $152 weekly for just the two of us and we still had co-pays and deductibles. Good luck to both to both of you!
    john-skpt responded:
    The whole situation with Medicare before 67 is the definition of "ESRD". There is no single criterion to satisfy this; it depends on an evaluation by several doctors. It can be defined as ESRD before starting dialysis, or after.

    SS Disability is a whole different ball of wax, and it is more complicated to meet their requirements. Like most things, including SS Retirement benefits, the amout that you get is based on your age, how long you have worked, and how much you have paid into the system over the years.

    You might be able to consult a social worker at what will eventually be your dialysis center. Nearly all centers have a social worker on staff to help with advice and getting the paperwork ready for Medicare and SS Disability.
    mcjonesy729 responded:
    Hello! I have kidney disease and I am now on disability. I don't get nearly the amount your husband will get. I had to stop work in 2002. I was so tired all the time and I worked as a medical assistant in a doctor's office. I couldn't handle the fast pace. I was denied when I first applied. I appealed it and hired a lawyer. My lawyer went to my doctor and he told my story for disability. I live in Michigan and the judges were bogged down so they sent my file to a judge in Chicago. He deemed me disabled after reading my file. In fact, I was very lucky. I was told that usually you have to go to court to win your case. I didn't have to. He stated that I had enough medical proof that I should have been approved when I first applied and I was able to get my disability beginning the day I stopped working. Usually they don't pay you for six months after the disability. The best part about disability, depending on whether it is disability or SSI --there is a difference--will depend on the insurance. One thing I do know for sure is this: Medicaid is available once he is deemed disabled by the disability offices. That means that if he became disabled, e.g. in March of 2010, Medicaid will pay the bills and medication from that point. If it is straight disability, he will receive Medicare two years after becoming disabled. If it is SSI, he will stay on Medicaid. Either way, those bills will be covered and you do not have to worry about "Obamacare". It took me over two years to get my disability. It is a very long process. My husband is disabled with something totally different and it took three years. Disability will go back to six months after his disability began and you will get all of that back pay. It is really difficult to live on disability. Make sure you take advantage of everything that he would qualify for. They also offer "Extra Help" and pay Medicare premiums if your income is low and your prescriptions will be less. That saved us when we were waiting for my husband's disability. And, Medicaid then covers what Medicare doesn't. We would be homeless if that extra help had not been there, but our situation is different. But the disability system is the same. Their criteria to be deemed disabled is pretty heavy, but with a lawyer, lots of medical proof and patience, it can happen. Good luck and if you need any more info, and if I can answer it, I would be happy to help.
    kirbyboy replied to mcjonesy729's response:
    This is so stressful. Reading what all of you have written is scary. I will find strength in the fact that though you had a lot of trouble with all of it, you stayed the course. My husband is self employed and does construction. So cal is way to expensive for us to now live when he gets the fistula and can't work due to having to lift. I know this already but he will have to realize this himself in time probably after the consultation re the fistula. I keep reading about hoe expensive dialysis is etc. what do people do such as some of you on the discussion groups when you are dependent on that income? I make about 2300 a mo . I clear about 996.00 after my insurance for us is out and taxes. Then I pay my car pmt and have about 450.00 left at the max . Without my husbands income we will not survive. I just can't believe that people are left with nothing. I realize it's no ones responsibility out there to help people but with diabetis and kidney disease being on the rise you would think that if a dr says you can't work or have limits etc as to what you can do that everyone would qualify so they can have meds a roof of some sort over there head. Am I being to dramatic or is it because we don't know the ropes?
    mcjonesy729 replied to kirbyboy's response:
    No, Kirbyboy, you are not being overly dramatic in the least! The whole process is very frightening! Nothing is worse than having your entire world turned upside down. Fortunately, most states have funds to help with dialysis. I am not on dialysis, thank the Lord, but if I was, I would use every resource that is out there to help with the cost. There are also support groups for him and for you through the kidney foundation. You will survive. We have and I'm not sure how, but we have. This whole thing is frightening for you and for your husband. I wish I could tell you that all will be well. Eventually, when all your "ducks" are in a row, you will see the light at the end of the tunnel. Kidney disease in itself is very hard to handle. I won't lie. Just hearing the word "disease" is enough to frighten anyone, I know that. And, the kidneys are organs we need and cannot live without them. I have a friend whose spouse is on dialysis and it makes him extremely tired. They have to check his kidney function levels every time he has dialysis. When he comes home, he sleeps the rest of the day away. I cannot understand why disability would turn him down and hopefully he will get it without having to fight too hard for it. Sounds like you both have enough fights to battle! Go to DHS, get help if you need to, food stamps, medicaid, all of it. When he gets his disability, explain to Social Security your finances and they may offer what they call Extra Help to cover the costs of some of the medications and the dialysis. Medicare is good too. I have straight Medicare as then I do not have to pay any copays until they submit the bills. That does help. When he gets medicare, they will try to make you get into an insurance carrier. Don't do it! Just get the prescription coverage and the straight medicare. I promise! You will get through this and I am praying for you and your husband!
    john-skpt replied to mcjonesy729's response:
    We had not mentioned this much before, since we have been concentrating on financial stuff, but, since Mcjonesy mention it:

    Hemodialysis can (and generally does) make the patient very weak and tired. It's just the nature of the process. After a session, blood pressure generally drops significantly, and returns only very slowly over a day or a day and a half. For me, treatment days were just a write off: I could not do anything at all. Then the day after I would start to feel somewhat OK for a while. And the third day the toxins were building up again and I would start to feel really cruddy again.

    Decades ago, there was an experimental program in Canada in which folks did the dialysis at home, at night, and every night. Doing it slowly, and 7 times a week alleviated almost all of the symptoms that come with doing it 3 times a week for a few hours. But it just was not really practical to put everybody in the country on that plan: there just were not enough machines and the costs of doing it so frequently were not sustainable.

    "At Home" hemodialysis is an option for some patients, and can simplify some things. My nephrologist told me long ago that a few patients were doing the at home thing and were adding a couple of treatments a week in order to minimize symptoms. But again, Medicare will cover three treatments not 5, so we are back to the out of pocket expenses.

    I think that you two will be able to work things out, but it is a huge amount of new information to process at one shot. Try not to get too deep into panic mode. There is a good bit of help available, but it will come from a lot of different sources, and it takes a while to get everything sorted out.
    john-skpt replied to john-skpt's response:
    PS: Ask the nephrologist about the possibility of doing peritoneal dialysis. It's still tedious and has some limitations, but you avoid a vascular incision (but will have an abdominal incision).

    When I was doing peritoneal dialysis I had better energy and very few blood pressure fluctuations. There are still some limits on lifting heavy articles, but I was far less restricted on PD.

    It does not work well for everybody, but it can't hurt to ask.
    kirbyboy replied to mcjonesy729's response:
    Thank you so much. Let us all be well:)
    kirbyboy replied to john-skpt's response:
    Hi john, As always thank you for your response. We will see the vascular surgeon on July 1st and go from there. I have calmed down , done research and will wait. Here is a question for you. Do you know if dialysis can be avoided for say 3 yrs for example if you have strict control of your diabetis and you are doing all you can for kidney health by eating the low phos, protein, potassium,sodium etc. if his gfr is 22 can it stay that way if you do your part, so that dialysis can be avoided a little longer? Though some research says yes, I have not asked anyone who is on dialysis if they have experienced this. If you know anything about this can you let me know? Thank you be well
    kirbyboy replied to kirbyboy's response:
    Hi everyone who so nicely responded. I found out today that just because the dr says you have a fistula or even are doing dialysis you cannot qualify for disability. He said if you become ill or something unforeseen happens and you can't work then you do not qualify. So as time goes by maybe something will change. Thanks for the info

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