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Author Topic: Now what do I do?  (Read 4354 times)
TexanSummer
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« on: May 11, 2011, 03:24:12 PM »
Charles had his fistula placed 2 weeks ago....got the staples out yesterday. He was approved for Medicare part D & the same day (Monday) the letter came with the amount for his Medicare premium. I have been everywhere I can think of....family, friends, even started an online fundraiser.....seems everyone is all tapped out right now. His premium is due in about 2 weeks & Medicare starts on June 1st....how does that work without being able to pay the premium? We are facing the loss of our only car, behind on rent, & now we are arguing because I just can't take it anymore & he feels as though he's nothing more than a drain on our family....I'm worried about our future....he's even contimplating not getting a transplant, even though he can't stand being "tied down to a machine" so much. I'm at a complete loss & I don't think I can hold it together much longer. I'm trying so hard to stay positive....but the hold that I have, my grip on sanity, it's slipping....someone greased the line when I wasn't looking.....
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Wife of Charles --
   diagnosed with psoriasis in 2000?
   no diagnosed kidney issues until 3 weeks ago
   diagnosed with ESRD 2/24/11
   found out birth defect of kidney valve was cause 2/28/11
   started dialysis  3/1/11
   I still have a level head....most of the time
boswife
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us and fam easter 2013
« Reply #1 on: May 11, 2011, 07:09:38 PM »
I hope someone jumps in here but im almost sure that because it's dialysis realated, you can get your medical RETROACTIVE to the date of fistula surgury.  Please check into that as i know it has been done, i just dont remember how  :(
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
kellyt
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« Reply #2 on: May 11, 2011, 10:44:23 PM »
wow, I'm so sorry!  First, call the transplant clinic and speak with the social worker.  See if they can help.  I know Medicare is expensive.  I pay $350 every three months, but I'm very thankful for the help.  How much is his premium?
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
TexanSummer
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« Reply #3 on: May 12, 2011, 08:11:43 AM »
He's got some coverage through KHC....that went into effect shortly after he was diagnosed. As for calling the TP clinic, we haven't signed up anywhere because we were told that it would be best to not turn in the app until closer to when his Medicare kicks in so the app wouldn't get lost (told that they wouldn't even start anything until Medicare was in effect). The premium is $350ish...not sure how often it has to be paid though. No disability (denied due to not having paid into it enough over the last 5-10 years, he was a self contractor that didn't pay in) & SSI....still pending.
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Wife of Charles --
   diagnosed with psoriasis in 2000?
   no diagnosed kidney issues until 3 weeks ago
   diagnosed with ESRD 2/24/11
   found out birth defect of kidney valve was cause 2/28/11
   started dialysis  3/1/11
   I still have a level head....most of the time
sparklelady
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« Reply #4 on: May 12, 2011, 10:48:05 AM »
Look into applying with the AKF. They paid all of my medicare premiums and a portion of my private insurance premium. If you can show that you need the financial help. My social worker filed all the papers for me
Good luck and I'll say a prayer for you.
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TexanSummer
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« Reply #5 on: May 12, 2011, 12:46:37 PM »
Quote from: sparklelady on May 12, 2011, 10:48:05 AM
Look into applying with the AKF.

THANK YOU!!!!!!!! That's just what I needed!! Sadly, until you mentioned it, I had forgotten that I was already going to check it out....just never got to it after the KHC....

Oh, & as for the online fundraiser, if anyone wants to pass it along, www.giveforward.com/charleskidneyfund
Found out about the site thanks to one of Okarol's news story postings!
« Last Edit: May 12, 2011, 12:48:34 PM by TexanSummer » Logged
Wife of Charles --
   diagnosed with psoriasis in 2000?
   no diagnosed kidney issues until 3 weeks ago
   diagnosed with ESRD 2/24/11
   found out birth defect of kidney valve was cause 2/28/11
   started dialysis  3/1/11
   I still have a level head....most of the time
sparklelady
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« Reply #6 on: May 12, 2011, 01:54:25 PM »
You are so welcome!!! :)
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Poppylicious
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« Reply #7 on: May 13, 2011, 11:13:31 AM »
Sounds like a *phew* is in order ... glad sparklelady could help you, Summer!  I don't have a clue about these things as I'm in the UK and it is so different here, but I hope you and Charles can find some relief from this soon.  *huggles* for both of you.
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #8 on: May 13, 2011, 03:47:06 PM »
can u get on medicaid? if so there is paper work that u can then fill out to get the state to pay your medicare premiums!
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
looneytunes
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Wishin' I was Fishin'
« Reply #9 on: May 13, 2011, 10:08:13 PM »
Aw Summer, sorry I had not seen this earlier.  AKF can help and a lot of dialysis providers have other resources to help with Medicare premiums also.  They seem to have a big interest in making sure there is coverage to help pay for their services.  I know at one point, our clinic offered several times to help us with both the Medicare premium as well as our private insurance premiums. 

I know right now this is so overwhelming for both of you and my heart goes out to you both.   I sincerely hope that things look a little brighter for you both real soon.   :grouphug;
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"The key to being patient is having something to do in the meantime" AU
TexanSummer
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« Reply #10 on: May 17, 2011, 02:12:08 PM »
Quote from: rsudock on May 13, 2011, 03:47:06 PM
can u get on medicaid? if so there is paper work that u can then fill out to get the state to pay your medicare premiums!

Apparently, just because there is a section for Medicaid for Elderly/Disabled on the app...it doesn't mean that there is medicaid for adults....where that makes sense, I still don't know & no one can tell me. They all just tell me that I need to call here, then here tells me I need to call there, there tells me to call here again....I'm done. lol
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Wife of Charles --
   diagnosed with psoriasis in 2000?
   no diagnosed kidney issues until 3 weeks ago
   diagnosed with ESRD 2/24/11
   found out birth defect of kidney valve was cause 2/28/11
   started dialysis  3/1/11
   I still have a level head....most of the time
rsudock
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Posts: 1351


will of the healthy makes up the fate of the sick.
« Reply #11 on: May 18, 2011, 09:03:17 AM »
Just sucks that someone can't step up and help you...why is it that great social workers are the exception and not the rule??? (eek don't let HDSW see this!! ;)   )

Hang in there and hang tough!!

xo,
R
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
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