Now lost the job, no EDD. I can't pay treatment bills any more.

[Jumbo1]

I was developed kidneys failure before 2002(first diagnosed was stage 2). Kidneys are like household water filter. When they were expired. They are unrepairable. Kidneys slowly decline from stage 2 to stage 5(final). I started dialysis since 2015. I have been working in electronic field. Then I developed neuropathy legs and left hand. Now I have only one right hand usable to put food in the mouth. Since my job was aerospace engineer, use only one hand was very hard. I had to built the projects. Used only right hand was tough to picked up electronic components, trim the wires and cut the wires. Company end up let me go little before Covid-19 spread. Now I owed dialysis clinic for treatments co pay fee and all the bills. I don't have EDD any more little survive with SSDI little above 1K.

I thought it was ok to have organs numbness but it was not. I don't have feedback from legs and left hand, easy to get cut without knowing. I noticed bleeding was longer than usual. Sometimes I will have Phantom limb pain( pain without causing). I won't know when it will happen. Pain can happen anytime. I have no family to support. When I fell only my old mom came to look. She can't/won't help me just look until I can get up by myself. I easily to fall because legs has no feedback and low blood pressure. I only have right hand usable at this point to put food in my mouth. Now right hand also showed sign of neuropathy, started to numb in middle finger area. If I lose last hand, I guess I have to eat the way dogs eating. Or when that time comes, I don't have any food to eat because not enough income.

When doing dialysis, fluid removing from blood the most. Fluid in muscle will slowly move into blood causing muscle cramps. Blood became thickening. Heart works harder to pump. I have to carry nitroglycerin on my neck all the time because chest pain. After treatment neuropathy pain was severe.

Food, I have to followed Renal Diet guide lines. I can't eat what are good for most people. Because there are potassium and phosphorus contain it them. Potassium will stop the heart. Phosphorus will break the bones.

[Darlenia]

Oh Jumbo1. Your situation breaks my heart. Please contact your social worker at your dialysis center and lay out your situation to her. She should be able to look into getting you on Medicare as kidney failure gives people the option to enroll without a two-year waiting period, regardless of age. She will likely also help you with securing resources from nonprofits such as the National Kidney Foundation and others. Please don't hesitate. Reach out and help will come to you. In the meantime, know that I care. And I'm sure there are many others who do too. Sending prayers your way.

[Jumbo1 in reply to Darlenia]

I got Medicare and Kaiser Medicare Adv but on Kaiser part I have to pay 20%($9xx/mo). Bills kept pilling up I can't pay it. Plus my living expense is the problem. How can I find the job for disabled? I'm in electronic field not a desk job. Social worker only find me free meals but they haven't call/reply me yet.Thanks Darlenia

[Jayhawker in reply to Jumbo1]

I agree with Datlenia’s suggestion. In addition to talking with your dialysis center’s social worker, I’d contact medicare as well as the health insurance counselors for seniors in your state. (In Kansas that group is SHIC, Senior Health Insurance Counselors.)

As far as work goes, I’d look for any job with medical benefits. The medical benefits will work in tandem with your Medicare. Even if the job is outside your professional training and expertise, it would be an income source AND with medical insurance, it will provide additional conversed for your medical expenses.

You may be able to find a job that allows you to work from home. That could be ideal given your medical needs. That could flex around dialysus sessions or might even be “doable” as you are in center receiving your treatments, frankly, I’m seeing lots of ads for jobs right now as we’re opening back up from COVID so this could be the perfect time to job hunt.

Let us know how it’s going as you work to solve both issues : health insurance and working,

Jayhawker

[Jumbo1 in reply to Jayhawker]

I'm looking for job that I can do at home but not find it yet.

[KidneyCoach NKF Ambassador]

In agreement here with what others have said. Your clinic social worker is your go to person now. Advantage plans normally PAY the 20% Medicare doesn't pay so it looks like something is wrong with your plan. Have your social worker check on it. It also sounds as if you may need a neurologist referral to help with getting some use back from arm and legs? Has anyone told you why it's progressing? Do you have uncontrolled diabetes?Unfortunately many on dialysis without jobs are in your position financially. I'm surprised you get only ssi, not ssd. If you've been working for years with a relatively medium paying job you should be getting ssd which is more than ssi. The renal diet should be individually designed for you. Talk to your dietitian. They should be able to help.

Lastly, and no offense but you sound depressed. Have you considered counseling and/or medications? Many with chronic illnesses take anti depressants. There is no shame. Ive taken them and they have truly helped. This life is TOUGH, but doable. A work from home job sounds like it could be the right direction for you and many pay well.

Blessings, Amy

Dialysis 19+ years

[Jumbo1 in reply to KidneyCoach]

They paid 20% from Medicare on pre Trump but now I have to pay 20% of 20% (5K). My A1C just around 6 but nerves are dying. I'm on the dark road don't know what to do for living.

[KidneyCoach NKF Ambassador in reply to Jumbo1]

Your 20% after Medicare should be NO where near $5,000. Medicare pays about $3,000/month which leaves around $600 or less at 20%. IF you're currently unemployed your clinic will write off that amount not requiring payment from you. Believe me, I've been through this several times with different clinics. This is the standard. What clinic are you at? Fresenius, Davita, DCI, RPA?

Why do you say your nerves are dying? Have you been thoroughly evaluated by a vascular surgeon and a neurologist who have confirmed dead nerves?

Please talk to someone about counseling or anti depressants.

Blessings

[Jumbo1 in reply to KidneyCoach]

Yes, neurologist diag me for neuropathy. They said nothing we can do about it only gave me Rx. Medicare left 5k for Kaiser then Kaiser left me 20% on that. Fresenius bill me on this.

[KidneyCoach NKF Ambassador in reply to Jumbo1]

You may want to file an appeal, giving them your unemployment information etc. I know many have been in similar situations over the last 20 years and have been resolved satisfactorily.Blessings

[Jumbo1 in reply to KidneyCoach]

I just ignored it, social worker knew that I'm unemployed. I don't know that billing dept knew that.

[KyMom7]

Please ask to speak to the social worker at your dialysis center. Once you began dialysis, you should have qualified for Medicare without the "normal" two-year wait. also, have the social worker apply for a spend-down Medicaid card through your state. Give a call to the Vocational Rehab in your state. They should be able to work with you in finding a position in your field where accommodations are made due to your needs. Contact the National Kidney Foundation for assistance with your remaining medical bills. There is help out there! Please don't give up.

[Jumbo1 in reply to KyMom7]

I have Medicare and Kaiser. They don't pay 100% after trump.

[KyMom7 in reply to Jumbo1]

Have the social worker ask about the Home and Community Based programs. If offered, it should pickup the 20%.

[KidneyCoach NKF Ambassador in reply to Jumbo1]

Pre Trump/post Trump has no impact on what an advantage plan pays. Perhaps your social worker can assist in sorting this out. Please take this to clinic social worker.

[Jumbo1 in reply to KidneyCoach]

Pre trump, I don't have to pay anything but after his I have to pay 20%.

[KidneyCoach NKF Ambassador in reply to Jumbo1]

Your 20% shouldn't be more than $600,nothing like $900-$5,000. Now you're unemployed you shouldn't need to pay anything. But I am just guessing by the information you've given. Blessings

[Jumbo1 in reply to KidneyCoach]

Yes around $9xx/mo they look like bills me every three months. I don't pay I can't pay, my priority is food.

[Jumbo1]

I wasn't get much pay in aerospace (not gov contract), all want to pay low or don't get hired. I didn't get 401k, didn't think about live this long to use it. I was on stage 2 in early 30. My A1C around 6 don't know why nerves are dying. Six years on dialysis not eligible to be on the list(BMI) plus no point to get kidneys but other organs are dead.

[KidneyCoach NKF Ambassador in reply to Jumbo1]

What other organs are dead? If BMI too high then get assistance to lose weight. Many transplant centers don't have a BMI criteria. You will have to check which ones dont.

[Jumbo1 in reply to KidneyCoach]

Like I said I can't regrow nerves on my legs and hands. Without nerves, muscles are shrinking and useless.

[KidneyCoach NKF Ambassador]

I'm so sorry. Getting to a neurologist sound like a top priority to find cause of loss of limbs. Social worker and past work history should be getting SSD AND Medicare. The remaining 20% is normally written off especially if you are no longer employed. Since you said you do have Medicare and on dialysis 6 years dialysis, Medicare caps payment to just about $3,000 monthly. Since you're unemployed the clinic will likely write off anything you may owe. You won't know until you reach out and talk to social worker.

Get to a counselor. Depression can be a real issue. Many centers have no specific BMI cutoff which should open doors for you on transplant issue. Gotta start advocating for yourself. Nobody can do better for you than you. I don't understand " no point to get kidneys but other organs are dead." What organs are dead beside kidneys?

You've been given so much great advice, tips etc now it is up to you to choose for yourself to move forward or stay motionless.

Blessings

[Jumbo1 in reply to KidneyCoach]

I can't use my left hand and legs. My right hand is going too.

[Jumbo1]

Yeah, I passed 50, with one hand engineer now.