single mom/Cf child 4 recommended for transplant

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trigueros79

New member
I posted waht is down below under transplant I think, can you tell I am new at this,... but Joanne recommended to post under adults so I am doing that and want to add she does have medicaid, but I mean home and what about the actual transplant, I am thinking as least 6 weeks off from work right? Also their father isnt any help much... Any advice?

Hi!
I am a single mom with a daughter with CF who is 4, also 2 more daughters no CF 7 & 9, my daughter has been recommended for transplant. We will go to Houston for an evaluation to be put on the list. I have been working and going to school which now will be put on hold considering what is ahead. I have done well juggling all but there have been financial and emotional pressures with everything. Just life I guess...
What will it be like financially? Other parents, with children what did you have to do, what about work, does anyone have any tips?
 
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Emily65Roses

New member
Just FYI -- there's something called the <a target=_blank class=ftalternatingbarlinklarge href="http://www.dol.gov/esa/whd/fmla/">Family and Medical Leave Act</a> that makes it illegal for them to fire you for taking time off:
<i>for the birth and care of the newborn child of the employee;
for placement with the employee of a son or daughter for adoption or foster care;
to care for an immediate family member (spouse, child, or parent) with a serious health condition; or
to take medical leave when the employee is unable to work because of a serious health condition.</i>

It's unpaid leave, of course. But you're allowed a year of it, and legally, your job can't do anything about it. I don't know what to tell you about your finances. I just don't want you to worry about your job being in jeopardy, and wanted to make sure you were aware of your rights as a CF parent.
 
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anonymous

New member
FMLA is only for 12 weeks during a one year period.
But some employees will let you take it intermittently which could mean that you take 6-8 weeks off in one bulk unit and then take the other 20 days as needed for followup
 
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julie

New member
They company cannot decide to let you split it up as THEY wish. You take it as you need it. Up to that maximum previously listed.

That being said, you have to be with a company that has 50 or more employees and you have to have been employed there for at least 12 months.

It's good that she's on medicaid. Get a social security (SSI) application for her now so you can mail it in when she gets the transplant. Transplant recipients are automatically elgible for SSI for up to 12 months after the transplant. Is she already on some sort of disability?

Also, apply for some reasources out there... The Lungs for life foundation, they give up to $500 in a 12 month period to CFer families in need or transplant grants.

I knowt he Boomer Esiason foundation gives transplant grants. Not sure of the criteria or how much they can help with, but one of the most wonderful people behind the foundation is Jerry Cahill. He has a blog on here, it's ot the Left under organizational Blogs. Maybe email/PM him and ask if there is any help you can apply for.

Also the Milan Foundation provides financial support to CF families and they have a really simple application process.

Additionally, www.r4stars.org (Reach for the stars Foundation) is set up to help CFer families. If I were you, I would contact all of them and see how they can help. Don't be afraid to ask for the help! We all need it at one time or another.

Best of luck.
 
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anonymous

New member
Just want to say the oerfect to place to have a transplANT IS hOUSTON. jUST MAKE SURE YOU GET A HOLD OF A DOCTOR BY THE NAME OF GEORGE MALLORY MD
HE'S THE BEST He help you, ust trust him
dd
 
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anonymous

New member
Julie's right. I stand corrected. For the care of a sick child (leave under subsection C), they have to let you take it intermittently.

"# Subject to paragraph (2), subsection (e)(2), and section 103(b)(5), leave under subparagraph (C) or (D) of subsection (a)(1) may be taken intermittently or on a reduced leave schedule when medically necessary. The taking of leave intermittently or on a reduced leave schedule pursuant to this paragraph shall not result in a reduction in the total amount of leave to which the employee is entitled under subsection (a) beyond the amount of leave actually taken.
# (2) ALTERNATIVE POSITION.-- If an employee requests intermittent leave, or leave on a reduced leave schedule, under subparagraph (C) or (D) of subsection (a)(1), that is foreseeable based on planned medical treatment, the employer may require such employee to transfer temporarily to an available alternative position offered by the employer for which the employee is qualified and that--

* (A) has equivalent pay and benefits; and
* (B) better accommodates recurring periods of leave than the regular employment position of the employee."

-LisaV
 
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imondeck

New member
Patty, it sounds like you are going through a very stressful and difficult time in your life right now and you sound like a very strong woman. Who is your support system right now (Mom, Dad, sibs)?

May you find the strength to be a "super Mom".

Take care and I hope that all goes well with your daughter.
 
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