I can't wrap my mind around it all! Vent.

[Beth35]

I went to the pre-transplant center on Friday to get worked up for another transplant.  My labs are not quite bad enough to go on the list but I thought I would get started early this time around so that I could go right on as soon as possible. 

Well, my head is spinning.  There are so many things to think of that I didn't have to worry about before.  When I first got sick I was working at Kmart and when I couldn't work anymore I went on Medicare and had my parents insurance as well.  I never had to worry about paying for bills.

NOW I am a single mom to two kids, I have been paying disability insurance and more disability insurance on my car because I wanted to be ready for when I got sick again.

Well now I'm super confused.  So I have to have medicare AND another primary insurance (which I have NOW) in order to pay for dialysis and even be on the transplant list.  Well what happens when I can't work and my job forces me to leave and I lose my insurance?  How do I pay for the other 20 percent that medicare does not cover?

On top of that I have been getting constant UTI's and now I may need surgery to have a cist removed.  Not to mention I also have reflux to the kidney and have been putting off surgery for that.  When does it all end?  If I didn't have kids, I swear I wouldn't care what happened to me.  I'm so tired of all of this stress...and feeling bad and not having anyone understand.

It's so hard to be sick and to worry all of the time not just about your health, but about your finances.  Why are things so hard?  I honestly can't remember a time when I was not sick from something.  I'm spo tired.

I worry about my job, what other teachers/parents are saying about me and my absences, how I am going to keep everything going while I'm sick.  I'm scared of dying and leaving my kids alone or worse yet having something happen to me while they are in the house.  I hate feeling this way.

I guess I just needed to vent.  Does anyone here not work while on dialysis and does not have insurance coverage through a spouse?

[jbeany]

I'm on dialysis and the transplant list, and my only real income is SS disability.  Medicare is my primary insurance.  I have a BCBS gap coverage that pays the other 20%.  It costs me $107 a month.  My social worker at my clinic gave me information on the best gap coverage.  Your transplant financial people should also be able to help you find one.  You will have to get signed up for assistance if you don't have your job and its insurance.  I qualify for Medicaid as well, so my prescriptions are only $3.  Until the Medicaid started, the prescriptions were tremendously expensive.  I get food stamps as well. (Although it's a debit card now, not stamps.)  The money is a constant worry, but I'm making it by making do with less.

[MIbarra]

  Sorry you have to worry about so much! I wish I had answers for you.

[Rerun]

Your job legally can't fire you because you are sick.  But, we all know it happens.  You should get disability from Social Security.  The problem is when you get a transplant you are kicked off that in 12 months.  But, if everything goes well after the transplant, you will feel great and back to teaching full-time.

Just take one day at a time.

[Beth35]

Apparently my job can let me go after I have been on disability for so long.  Then I lose my benefits too.  I am meeting with a lawyer in a few weeks to discuss my options at my job as far as trying to keep my benefits.  If I can hold off another year before I have to start dialysis I can get disability retirement from my job but I don't know if I can make it that long.

How do you go about getting medicaid and Medigap?

Today I am going to see if I have to have a cyst removed.  Oh joy.

[Wallyz]

The social workers at the hospital should have an Medigap or Medicaid application, and hopefully a contact int hte state office.

[jbeany]

My social worker gave me an application for the Medigap policy.  The Medicaid you have to apply for at your local assistance agency.  Around here, it's called the FIA, for Family Independence Agency.  You go in and fill out a 12 page app where you give them info on everything from what assets you have to what bills you pay every month.  They run all the info into their system and tell you what you qualify for in terms of aid.  I'm now getting food assistance, financial assistance paying my premiums on Medicare, and when I need it, aid to pay for utilities.  (I can manage phone and electric - it's the $500 or $600 dollars to fill my propane tank I can't always manage.)  The help is there, you just have to slog thru the paperwork to get it.

[paddbear0000]

I'm just as confused about paying for all of this dialysis and transplant stuff as you, so the only thing I can offer is a hug.  I've been told things get easier to understand at some point!

[jbeany]

I've been told things get easier to understand at some point!

Right.  The bill from the funeral home should be easy to figure out!

[Beth35]

LOL on the funeral bill.  I'm just so stressed right now.  I'm kind of at my boiling point.  Here I am being MORE worried about how I'm going to survive financially when I shouldn't even have to think about that.  Damn it, I knew I should have gotten married a long time ago.  I need those damn benefits!!!  It's too late now.  I'm sure dating a dialysis patient with two young children is not that desirable.   

Anyone know of any renal dating websites?  Hee hee!

[jbeany]

We had one here for a while, but it was mostly patients in the same financial mess.  No hope for a sugar daddy there!   

[Beth35]

Damn.  That stinks.  LOL!

[Lucinda]

I am really sorry you are having all these financial problems.  Here in Australia we don't have to pay for a thing.  Medicare covers it all.  You guys have it really tough over there.  I hope you can get it all sorted. xx

[keefbeer]

Ditto to Australia, here in the UK it all comes free of charge, treatment, medication, drinks and snacks while dialysing I even get the equivalent of 20 cents a mile for my driving to and from the Unit.
The only problem is some benefits need to be uncovered with a bit of detective work so like earlier posts have suggested hassle your Social Worker and pick the brains of other patients and ask them how they have progressed things.