I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: Itool4looti on July 30, 2018, 05:47:28 AM

Title: New and Learning The Hard Way
Post by: Itool4looti on July 30, 2018, 05:47:28 AM
As it says, I am new to the site (thanks for the link Reddit!), and am learning the hard way about preparing for dialysis.  My nephrologist had advised me that I should no longer work and I have since put in for a leave of absence while we begin this journey.  I have applied for SSI/SSDI a month ago, but as my caseworker informed me, due to backlogs it will take anywhere from 5 to 6 months before a preliminary decision can be made, and if approved it will be at least 5 more months before I would see any money.  So, there's a year gone.  Historically, my claim will be denied, so then it's potentially years of appeals.  I am one of the unfortunates that was only working part time with no benefits, so there's no long term/short term disability available to me.  I was already living paycheck to paycheck, so with no income, it appears that my car will very soon become my home.  I understand that the dialysis clinic will provide crackers and juice, so that's at least something to eat 3 days a week, so hey, not all bad news huh?

As I say, I am learning the hard way about how catastrophic ESRD is, not only physically, but financially and emotionally.
Title: Re: New and Learning The Hard Way
Post by: kickingandscreaming on July 30, 2018, 06:57:39 AM
Welcome to IHD. Sorry you have to be here and even sorrier that you are in such a predicament.  I hope The System comes through for you.  And soon.  But one thing to consider is that stopping work because of ESRD isn't a given.  Lots of people on D still work, perhaps less, but they still work and support their families.  I hope you get some decent resolution.  It's awful to feel so vulnerable.
Title: Re: New and Learning The Hard Way
Post by: Itool4looti on July 30, 2018, 07:43:27 AM
Should have been more precise...combination of  Stage 5 ESRD and CHF.  My job involves heavy lifting, so the nephrologist thought it would be best to avoid any lifting for the long term.  Thanks for your response.
Title: Re: New and Learning The Hard Way
Post by: cassandra on July 30, 2018, 08:33:47 AM
Welcome to the site Itool4Iooti


   :welcomesign;


Good luck, Cas
Title: Re: New and Learning The Hard Way
Post by: Itool4looti on July 30, 2018, 09:39:02 AM
Thanks you so much...
Title: Re: New and Learning The Hard Way
Post by: kristina on July 30, 2018, 11:32:11 AM
Welcome to IHD and I am very sorry about your situation and I do hope your renal social worker assists you to get the help you need as soon as is possible and I keep my fingers crossed for you  ...
Best of luck wishes from Kristina. :grouphug;
Title: Re: New and Learning The Hard Way
Post by: lulu836 on July 30, 2018, 01:49:14 PM
Maybe its just in my state but when diagnosed with ESRD a person is automatically put on Medicare and Medicaid if Medicaid is necessary.  The Medicare is only Part A but after 3 months you are covered for treatments.  Working I wouldn't now about.  I was diagnosed just 3 years ago and at that time I had already been retired for a long time and drawing my Social Security.  The clinic MSW should be able to help you with living arrangements. 
Title: Re: New and Learning The Hard Way
Post by: Michael Murphy on July 30, 2018, 03:18:42 PM
When at 62 I decided to g on disability I alked to fellow patients. All the people I talked to at the clinic were turned down and had to get a lawyer.  To save time I went home and applied on line figuring I would be turned down faster.  Strangely I was granted a disability that would be effective in 6 months.  I was shocked since every one else I had talked to was rejected.  The best reason I can come up with is most dialysis patients,when asked how bad dialysis is, minimise the impact by saying it’s ok or not bad.   My advise is file online.  You will either be accepted or rejected quicker plus no interview to minimise its effect on you.  Additionally while I had to stop working for 6 months prior to the start of dialysis my employer had a long term disability insurance that paid me for the 6 months.












Sp mod Cas
Title: Re: New and Learning The Hard Way
Post by: Mr Ken on August 05, 2018, 11:47:01 AM
One good thing about your disability claim is that once approved you get the claims from the date you first applied. You do not lose money do to the processing gap.

Ken
Title: Re: New and Learning The Hard Way
Post by: Charlie B53 on August 05, 2018, 06:52:51 PM

My Dr's wanted me to retire and get off my feet long before my kidneys got bad enough that Dialysis was mandatory.  I told the Dr's no way would SS Approve my claim without a lot of documentation.  That the Dr's would need to very clearly spell it out in the record everything making it perfectly clear.

I also applied on-line but did receive a thick packet of material I had to fill out and turn in.

I was surprised when I was approved.
Title: Re: New and Learning The Hard Way
Post by: Paul on August 07, 2018, 03:01:16 PM
 :welcomesign;
Hello Itool4looti, welcome to the site.

I have applied for SSI/SSDI a month ago, but as my caseworker informed me, due to backlogs it will take anywhere from 5 to 6 months before a preliminary decision can be made, and if approved it will be at least 5 more months before I would see any money.  So, there's a year gone.  Historically, my claim will be denied, so then it's potentially years of appeals.

America is unbelievable. Here in England it takes 5 weeks from application to getting basic benefit, and the papers and news shows are constantly saying this is an unacceptable length of wait. If our benefit took ten months there would be protests outside parliament so deep that the politicians would need police officers to clear a path in and out. At five weeks it will probably loose the current ruling party the next election if they have not done something about it by then. If it were ten months I dread to think what would happen.

Why do Americans accept this? Why are there not protests, eggs thrown at politicians, etc.?

Title: Re: New and Learning The Hard Way
Post by: Charlie B53 on August 07, 2018, 05:37:45 PM
Why do Americans accept this? Why are there not protests, eggs thrown at politicians, etc.?

I soo want to respond to this but am afraid of infringing on our 'No Politics' outside of our Political section.

I personally believe the majority of our Congress and Senate to be much like the old Soviet Politburo.  Corrupt, Overpaid, and concerned about nothing more than maintaining their position ABOVE the People.

I can't say I'm sorry for that Belief, but I am sorry and must apologize for saying this in an open forum.

Consider my hands slapped.

If further discussion is needed I suggest we start a thread in the Political area.