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Author Topic: I am ready to explode  (Read 4792 times)
mikey07840
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Her royal highness Queen Ruth on her throne, RIP

« on: April 15, 2009, 10:06:06 PM »

I have been trying to get my Medicare part A and B since December. According to my calendar, it is the middle of April. I still do not have my enrollment completed, I am still waiting for my card. I still do not have a bill or any documentation from the Social Security Administration. Bills from doctors and hospitals are stacking up, they have been rejected so far by Medicare. I haven't been able to get part D or a supplement yet.

I spent a couple of hours on the phone, mostly on hold today with the help of my social worker. Supposedly SSA will get this corrected and will call me tomorrow with an update. Does anyone know what my next step should be if it doesn't get corrected tomorrow?
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06/85 Diagnosed with type 1 Diabetes
10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma)
02/08 Started Hemodialysis
04/08 Started Peritoneal Dialysis (CAPD)
05/08 Started CCPD (my cycler: The little box of alarms)
07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed
08/09 AV Fistula redone higher up on arm, first one did not work
07/11 Mass found on remaining kidney
08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma
12/12 Whipple, mass on pancreas confirmed as renal cell carcinoma

• Don't Knock on Death's door; Ring the bell and run away. Death hates that.

• I'm not a complete Idiot -- some parts are missing.
Rerun
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Going through life tied to a chair!

« Reply #1 on: April 15, 2009, 11:23:29 PM »

Keep hounding and keep your Social Worker... Working!

Good Luck!               :thumbup;
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Sluff
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« Reply #2 on: April 16, 2009, 09:45:04 AM »

Climb the ladder till you talk to the right person and get your answers.
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monrein
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Might as well smile

« Reply #3 on: April 16, 2009, 10:01:42 AM »

Mikey, I have no advice but am sending you hugs of  perseverance and the huge wish that this all be resolved soon.  Keep on your social worker and tell her that the additional stress is taking its toll on your already fragile health.   :grouphug; :cuddle; :cuddle; :grouphug;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
paul.karen
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« Reply #4 on: April 16, 2009, 10:08:44 AM »

That sucks.
I may be wrong but i think Okarol posted a web link for medicare which works fast or i thought a member used it and it worked fast for them.  May have been something else might wanna do a search.

Sorry your going thorugh this.  Hope they sort you out fast.
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
willieandwinnie
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« Reply #5 on: April 16, 2009, 10:17:21 AM »

 :banghead; mikey, Social Security are the ones that need to straighten this out. Keep on that Social Worker and make them earn their money. You shouldn't have to be sitting here worrying about this stuff. I hope you get that call tomorrow. Keep us posted.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
MandaMe1986
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« Reply #6 on: April 16, 2009, 10:33:24 AM »

Keep on your Social Worker that is what they are there for. I am sure he/she will get it all taken care of. Sorry this is happing I know how scary medical bills can be. Let us know how it goes.  :cuddle;
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
karen547
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« Reply #7 on: April 16, 2009, 02:28:49 PM »

 :grouphug; Mikey I am sorry you are having a tough time with social security! I hope things get worked out ASAP!
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Wallyz
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« Reply #8 on: April 16, 2009, 03:45:35 PM »

Prayers, Mikey.  Keep on them.
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mikey07840
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Her royal highness Queen Ruth on her throne, RIP

« Reply #9 on: April 16, 2009, 03:55:05 PM »

Good news I think. I was called by Social Security, my medicare enrollment is complete. My Social Worker called and got a letter confirming this by fax today. It should only be a few days more for my card.

Thank you, everyone, for the support. King Leon also sends his best.
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06/85 Diagnosed with type 1 Diabetes
10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma)
02/08 Started Hemodialysis
04/08 Started Peritoneal Dialysis (CAPD)
05/08 Started CCPD (my cycler: The little box of alarms)
07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed
08/09 AV Fistula redone higher up on arm, first one did not work
07/11 Mass found on remaining kidney
08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma
12/12 Whipple, mass on pancreas confirmed as renal cell carcinoma

• Don't Knock on Death's door; Ring the bell and run away. Death hates that.

• I'm not a complete Idiot -- some parts are missing.
MandaMe1986
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« Reply #10 on: April 16, 2009, 04:15:41 PM »

Yey  :bandance; :bandance;
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
TeenHatesDialysis
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« Reply #11 on: April 16, 2009, 08:34:09 PM »

 :clap; Sorry that you had to go through that crap. Glad it has been resolved.  :2thumbsup;
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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
paddbear0000
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« Reply #12 on: April 16, 2009, 08:42:08 PM »

That's great to hear mikey. Now if only I could get through to my local SS office. Every time I try calling, i get a busy signal. I applied for disability a few weeks ago and someone from the office called me, but the number she left was for United Way (and someone else's office)!!
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********************************************************
I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
monrein
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Might as well smile

« Reply #13 on: April 17, 2009, 04:27:26 AM »

Thank goodness Mikey, I was getting ready to call KItkatz to bring her bat and get us down there.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
paris
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« Reply #14 on: April 17, 2009, 01:03:14 PM »

So glad you got that taken care of.  Once less thing to worry about.   :2thumbsup;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
jbeany
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Cattitude

« Reply #15 on: April 17, 2009, 02:06:51 PM »

That's great to hear mikey. Now if only I could get through to my local SS office. Every time I try calling, i get a busy signal. I applied for disability a few weeks ago and someone from the office called me, but the number she left was for United Way (and someone else's office)!!

Padd, check with your clinic social worker.  Mine gave me the magic number - the phone # to the local office, so you don't have to call the 1-800 one and get an hour of phone tree run around.  See if your social worker has one for your local office!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

kitkatz
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« Reply #16 on: April 17, 2009, 02:54:53 PM »

I am ready to go anytime.  :Kit n Stik; :Kit n Stik;  I have upgraded the stick to a light saber!
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
mikey07840
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Her royal highness Queen Ruth on her throne, RIP

« Reply #17 on: April 17, 2009, 04:34:26 PM »

That's great to hear mikey. Now if only I could get through to my local SS office. Every time I try calling, i get a busy signal. I applied for disability a few weeks ago and someone from the office called me, but the number she left was for United Way (and someone else's office)!!

Padd, check with your clinic social worker.  Mine gave me the magic number - the phone # to the local office, so you don't have to call the 1-800 one and get an hour of phone tree run around.  See if your social worker has one for your local office!

I have to agree. I ran into roadblocks until I got my social worker involved. She helped me by making conference calls with Social Security and me on the line. She stayed with me all morning on the phone. It was several hours. She was wonderful.
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06/85 Diagnosed with type 1 Diabetes
10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma)
02/08 Started Hemodialysis
04/08 Started Peritoneal Dialysis (CAPD)
05/08 Started CCPD (my cycler: The little box of alarms)
07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed
08/09 AV Fistula redone higher up on arm, first one did not work
07/11 Mass found on remaining kidney
08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma
12/12 Whipple, mass on pancreas confirmed as renal cell carcinoma

• Don't Knock on Death's door; Ring the bell and run away. Death hates that.

• I'm not a complete Idiot -- some parts are missing.
paddbear0000
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Dogs & IHDer's are always glad to see you!

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« Reply #18 on: April 17, 2009, 05:15:30 PM »

That's great to hear mikey. Now if only I could get through to my local SS office. Every time I try calling, i get a busy signal. I applied for disability a few weeks ago and someone from the office called me, but the number she left was for United Way (and someone else's office)!!

Padd, check with your clinic social worker.  Mine gave me the magic number - the phone # to the local office, so you don't have to call the 1-800 one and get an hour of phone tree run around.  See if your social worker has one for your local office!

I have the magic local office number! Who knew there were so many Daytonians on social security!!  ::)  In the application, they even ask for the number of someone else they can call in case they can't get a hold of you. I gave them my husband's cell phone number, but no one's ever called him. I hate the freakin' government!!! If it wasn't for the fact that they will be paying me money instead of the other way around, I would have just let it go by now.
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********************************************************
I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Stacy Without An E
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« Reply #19 on: April 18, 2009, 04:14:07 PM »

My social worker took care of this when I was at 20% kidney function so I would have it and was prepared for treatment.

Your social worker is obviously not doing their job and taking care of you as a patient of their clinic.  Tell her to stop playing Minesweeper and help you with this.  If that garners no results, go to their supervisor.
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Stacy Without An E

1st Kidney Transplant: May 1983
2nd Kidney Transplant: January 1996
3rd Kidney Transplant: Any day now.

The Adventures of Stacy Without An E
stacywithoutane.blogspot.com

Dialysis.  Two needles.  One machine.  No compassion.
G-Ma
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« Reply #20 on: April 18, 2009, 06:20:06 PM »

My so called SW...no matter what I ask the answer will be a version of " I don't think that's my job", I don't believe I should do that", that's your confidential information so I shouldn't know it" and on and on.............useless as a ___ on a _______.

 :Kit n Stik;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
mikey07840
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Her royal highness Queen Ruth on her throne, RIP

« Reply #21 on: April 24, 2009, 01:55:03 AM »

More good news.... my social worker got a copy of my letter of award faxed to her yesterday and I was able to pick it up. Now I can see the eye doctor and pick a part D drug plan.
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06/85 Diagnosed with type 1 Diabetes
10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma)
02/08 Started Hemodialysis
04/08 Started Peritoneal Dialysis (CAPD)
05/08 Started CCPD (my cycler: The little box of alarms)
07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed
08/09 AV Fistula redone higher up on arm, first one did not work
07/11 Mass found on remaining kidney
08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma
12/12 Whipple, mass on pancreas confirmed as renal cell carcinoma

• Don't Knock on Death's door; Ring the bell and run away. Death hates that.

• I'm not a complete Idiot -- some parts are missing.
jbeany
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Cattitude

« Reply #22 on: April 26, 2009, 02:00:02 PM »

It's a paperwork jungle out there!  Glad something is finally coming thru for you!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

hurlock1
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« Reply #23 on: April 27, 2009, 07:07:22 AM »

They  told me that when i started dialysis that getting medecare and disability would be a snap. Then, I started the process and asked the social workerqnd she acted like she didn't know anything about it. I was desperate. I didn't have ant money of my own. Every month th social worker would ask me if I had my card and ffor a coupla' mo. I didn't. But finally it came. It seemed like forever. The disability compensation seemed like it would take forever. I started in apr. and didn't start getting the disbilty till Aug.  There's all these commercials for lawyers that deal with the government about social security disability. I  kept seeing these commercials, not having any money, and I just thought maybe it was hopeless, that the government was just not going to come through, that it was just a fake! But, it was just that they are overwhelmed.  They have alot to do. Don't worry! The card and the compensation will come.
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #24 on: April 27, 2009, 09:36:59 AM »

More good news.... my social worker got a copy of my letter of award faxed to her yesterday and I was able to pick it up. Now I can see the eye doctor and pick a part D drug plan.
:yahoo; Yay! I am glad to hear you've made some progress!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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