How do YOU afford it?

[Chiparoo]

My MDS got to the point that a more aggressive treatment was required as of 6 weeks ago. I’m going the Vidaza route until an appropriate donor becomes available. What I’d like to ask all of you is,”how do you pay for all of this?” I’m not refering to the medical expenses. I have a decent PPO with Blue Cross for this. It’s living expenses!

Like a lot of you, I’m raising a family, have had to take a leave of absence from my job, and little money comes in. I just received (yesterday) my first disability check. I’m getting a little assistance from misc. organizations, utilities, and some really good friends.
And, my family has cut back dramatically on all expenses. With all of this, only a portion of my expenses are covered, and the major bills for the chemo (out of pocket costs) haven’t even reached my door yet. I have no idea how long this process will take, or when I will return to work.

Frankly, I don’t care about returning to work; I just want to get better. But the money issue is a very real thing. Can any of you shed some light on a topic that, I’m sure, affects most of us?

——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. On B6. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. RAEB w/multilineage dysplasia discovered after 4th BMB in Aug 05. Currently on Vidaza, weekly Procrit and Neupogen.

[Kathryn]

Hey, the MDS-Foundation may also offer something like this, but I know that the Leukemia-Lymphoma Society will reimburse $500 per year to you toward treatment, etc.. My father rec’d. a check from them personally. Also, the American Cancer Society has avenues to get financial aid, if you need.

I will keep you in my prayers and I am wishing the best for you. Keep the faith and hang in there!

Kathryn

[Sandy L]

Hi Chip
How long did you have to wait before the disability checks kicked in? What was te waiting period? Can you get Medicare?
I know your frustration. We are all in the same boat.

[Suzanne]

The wait for disability checks is 6 months from the date they determine that you are/were disabled. Unless you qualify for medicaid because of low income and assets, you have to be disabled for 2 years to qualify for medicare under disability.

[Chiparoo]

Sandy,
It was a month before I got a disability check. The delay was more with my oncologist than the state, though! I got a call from the state to clear up some info on the form, then got a check within 10 to 14 days. And no. I don’t qualify for medicare.

Kathyrn,
Thanks for the info from LLS. I have already applied and have received the forms for the $500 you are refering to.

Suzanne,
I didn’t know that some people have to wait 6 months to get a disability check. Outside of getting no compensation for the first 15 days, I guess I’m pretty lucky.

Thanks for everyones’ feedback. Hey, I’ve got am idea! Let’s buy a lottery ticket together and pay for our treatment with the winnings!

Chip

——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. On B6.Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. RAEB w/multilineage dysplasia discovered after 4th BMB in Aug 05. Currently on Vidaza, weekly Procrit and Neupogen.

[patti]

Chip,

Two thoughts: Do you have a 401K or some sort of retirement plan from where you worked that you can tap into (IRA, etc?)? Although it’s never desireable to have to do this, sometimes in life you just have to. There would be some tax consequences but nothing compared to the consequences of not being able to pay the bills. So, that’s my first thought.

Second thought isn’t very pretty either, but maybe a possibility. Has your doctor given you any sort of prognosis? If you have life insurance and your doctor writes a note that says you have six months or less most life insurance companies will let you draw 1/2 of the amount of life insurance for expenses. That sounds a little morbid but Jimbob is still with us even though he drew on his a few years ago!

Those were all my brain could storm out.

Best Wishes,

Patti

[Suzanne]

Guess the waiting period could be different in different states or they could have put the date of your becomming disabled at a prior date. I applied shortly after I was diagnosed and they put the date as the date that I stopped working. I did not wait 6 months from application -it was six months from the date they declared that I became disabled.

[diner]

Hi Chip, It’s hard enough having our problems without worrying about how to pay expenses. I sure hope some of the good suggestions have helped you some. There’s a lot of helpful people on this forum. God bless. Diner

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