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Posted 12/22/2010 3:35 AM (GMT 0)
ML has gone straight MAD this evening...dotty, off her rocker, whacko, i n s a n e... smhair

How could someone with ESLD in the midst of mild to moderate HE cope with the on line SSD application?

Not well I'd imagine.

I bet I spent 40 hours on the gosh darn thing...who the heck knows the start date of some job hubby had a zillion years ago when he had mind enough to be a computer consultant???

Thank goodness he was an organized sort and found the box with his tax returns...organized before he went over the end into HE land.

And I bet each person on this website has been to a dozen doctors, hospitals, clinics as he has.  Hep C didn't start out bad...it has been a long slow downward spiral.

His application was 19 printed pages when it was submitted.

Finger crossed.  He could use the $$$.

This caregiver is tired, cranky.  She thinks she'll eat a box of cookies, or a pie...hmmm pie...  idea

Hubby's been good since last hospitalization (12/11 - 12/16)...until yesterday...when his morning wt crept from 165 to 172 to 180 today!  Edema and ascites creeping in.  This evening you can hear his breathing/wheezing starting up.  PCP tomorrow morning for FU check on electrolytes.  Glad someone is scheduled to peek at him and I'm not left trying to decide whether to take him to Miami on my own.

Night all...I am so done with the computer right now!

Mama Lama

Posted 12/22/2010 4:15 AM (GMT 0)
ML, you will probably get additional forms in the mail to fill out.  The fact that he's being evaluated for transplant should go a long way.  But don't be totally shocked if he is turned down the first time.  That's what usually happens, and especially now that SS is short of funds.  No increase in 2010 and none next year, either.

If you have a page to insert info, write ESLD--terminal.  I've heard this helps.  Also, every time he goes to the doctor (even PCP) or has meds changed or has a test or a draining...report it to his SS worker.

I had to wait 2 yrs. for my SSD.  Got it on my hips and hep C, but not on liver cancer as I hadn't been diagnosed yet with that.

I used old resumes to come up with some of my employment dates.  I don't even know why they ask questions about employment, as they already know when you worked and the money you earned.

Get a good night's rest and hang in there.  Hubby may be due for a draining, so be prepared for a drive to Miami.

Hugs,

Connie

Posted 12/22/2010 4:47 AM (GMT 0)
ML-thinking about you and Mike. Sending positive thoughts your way.

Emma
Posted 12/22/2010 12:15 PM (GMT 0)
Morning again.

@Connie:

Remarks section:

"Mike very ill. End Stage Liver Disease. Without transplantation in next months, he will die." And then a bunch of stuff.

I think that should be clear.

I spoke with his assigned representative yesterday and will bring a package of information to her today. She seems very nice.

He was denied in 2008 and we are hoping they will consider this his 2 year wait for Medicare. That would help a lot also.

But that is out of our hands just now.


Thx,

Carol
Posted 12/22/2010 6:59 PM (GMT 0)

Your remarks are good, ML.  Also good that you are meeting with his representative.  As for the 2-year wait, is this the same case?  After he was turned down in 2008, did you/he keep appealing?  If not, this would be considered a new application.  I had also applied previously on the hep C as I could no longer work FT because of the fatigue, but they turned me down and also on appeal.  When I had the hip replacements and a revision in 2003, I applied again (new application) and was approved in 2005--just after I'd been diagnosed with liver cancer--and got the Medicare immediately, thank God.

Good luck!

Hugs,

Connie

Posted 12/22/2010 9:08 PM (GMT 0)
Mike was on in 45 days...I have a background in Voc Rehab... and knew what they were looking for... but additionally I made contact with the person making the decision... I actually called numerous time... and asked did you get this... I sent that... any other questions.. and I kind of put a face on the situation...
Posted 12/22/2010 9:09 PM (GMT 0)
I easily spent the 40 hours you are talking about also...
Posted 12/22/2010 9:52 PM (GMT 0)

I got a lawyer after the first turn-down of the last application.  I typed up all appts., copied labs, surgery reports, etc., and sent them directly to the lawyer to forward to SS.  After my appeal was turned down, I noticed they said nothing about my rt. hip replacement, only the left.  So I knew the lawyer had not been doing his job and forwarding the paperwork to SS.  He was fired by the legal firm, right after I discovered this, and I was able to transfer my case to a different lawyer in the firm...one I had orginally asked for, but who was tied up with a murder case...and I received SSD approval about 3 weeks after the new lawyer took my case.

I think SS is more likely to approve an application when a lawyer is involved, as they know you are in it for the long haul.  Of course, I would've liked to have had the $4,000 that my lawyer got out of my back pay.  (25% of total back pay goes directly to the lawyer.)

Hugs,

Connie

Posted 12/22/2010 10:18 PM (GMT 0)
We talked to a lawyer, or I did, he isn't in lawyer talking shape just now.

She suggested he (I) apply again. If turend down, she will jump on the band wagon.

There may be some problem with his # of quarters worked as he has been out of work a long time. He worked form highschool until he was too sick to do his computer work...like 30 some years. He tried to work at things and did work about another year and half at two different office stores in their copy center as he is handy with the computers and copiers. He earned 1/3 of his old wage and in the end couldn't even do that. He got too tired. And they always wanted him to scamper up a ladder and get the disassembled office chair off the top shelf, carry it down, put it together and load it in the car. He just wasn't up to it. So sad.

They got the report. I am copying the tests tonight.

Definitely NOT baking Christmas cookies this year.

Carol
Posted 12/22/2010 10:51 PM (GMT 0)

Carol, I was only able to work P/T from '93 until I was approved in '05.  By the time I got approval, I was down to about 12 hours a week.  The last 6 years, I worked from home.  I know those years of P/T work hurt me some, but they take the best ten years of employment (based on salary) and get their figure that way.

Good luck!

Hugs,

Connie

Posted 12/23/2010 4:29 AM (GMT 0)
ML,

Hang in there on the SSD stuff. My hubby was denied, too. He was denied SSD the last time because he did not have enough quarters worked, etc (mind you when we started all this business he was barely covered on the quarters). We finally ended up with help from a social worker at the hospital who documented the severity of my husband's health and we ended up getting approved for SSI (because my income was low enough). That way, he receives his medicaid and is covered, and approved for transplant.

Hang in there! It is a process! Go ahead and bake cookies.....you deserve the break!

Mer
Posted 12/23/2010 1:25 PM (GMT 0)
ML, Connie is right keep the appeals process going until he gets approved, so that they will go back to the first application.

They turned down my husband the first time. We did not get a lawyer, the second time. He was approved. It was the SS lady that told us to reapply and that we didn't need a lawyer. The only kicker was his quarters. Dummy me ......when he first told me that he couldn't work any longer.......I said, (Don't worry babe I make enough for both of us.) I did not realise about the quarter thing. It wasn't until about a year or so after he quit and we were getting swamped with medical bills that I decided it was time to apply. He missed the quarters by 1. Dummy him........worked under the table for a number of years which played a big factor in it. So even though he got approved,he only saw one $200 check. Because the year before I was on disability for 6 weeks after a surgery. I made too much money working according to Social Security. The moral of the story is........as soon as a patient is unable to work they need to apply for Social Security Disability, and not wait.

Good luck.......thoughts and prayers........
Posted 12/23/2010 6:06 PM (GMT 0)

Carol, they do not go back to the first application if it was a turn-down.  The case is closed.  But yes, ML needs to take this new application as far as it will go.  Due to SS being near broke, I think lots of people are being turned down who shouldn't be--but tenacity will win out.  Hang in there, ML.  Also, make copies of your initial application this time.  If he is turned down and you appeal, there will be more paperwork to fill out.  If you have all those dates in hand, it goes a lot faster.

Hugs,

Connie

Posted 12/23/2010 9:28 PM (GMT 0)
My mistake was in not doing the filing for him the last time. It is hard to know when your loved on goes "over the edge" in stuff like this.

So many things around here are caught in the time when he wasn't able to do things, didn't admit he could not, and I didn't pick up on it for a while...and some things we are having a problem about...

Folks don't want to hear that he didn't answer the first 5 letters about one thing or another!

My bad...but now I know to go over everything.

If he get to the mail first, he has likely taken things he feels are "his" and stuffed them in a drawer. I need to go through the various drawers and be certain things have been paid, etc.


He was actually managing pretty well until late summer and then crashed in August/September timeframe.

He has had other "bad periods" especially during treatment and has been tired for years, but not anything like ESLD. That is really a difficult time for the patient.

His feet and legs are so swollen today it is a wonder he can walk. But walk he did, right into the door of his AA meeting.

Hugs,

Carol
Posted 12/24/2010 12:06 AM (GMT 0)

I'm so proud of him, ML, and I'm sure you are, too.  Every meeting is "insurance" against him drinking again.

How much Lasix is he taking?  Does he need to be drained again?

Hugs,

Connie

Posted 12/24/2010 12:30 AM (GMT 0)
This is the thing.

I tried to reach his Hep Doc or Physicians' Assistant yesterday. No call back, which makes me nuts.

In hospital 12/11 - 12/15 they stopped all diuretics. He was badly dehydrated, was in acute renal failure and had very low sodium, low platelets (47), low h&H, blah blah. They rehydrated him, started him on xifaxan, gave him some albumen and 2 units of blood. Low sodium diet plus limited fluids by mouth.

And sent him home on NO diuretics. 5 days later he started to swell up again.

And we didn't get the xifaxan rx filled as the copay is $1300 for a month. We have to figure that out somehow. (IDEAS folks? I got the paperwork for the manufacturer's program, we'll see how that works. WE are appealing to the insurace, but goodluck with that.)

And, he has never been drained. He was supposed to twice, but the local hospital wouldn't do it because his INR is usually > or = 2.0! We asked at U Miami before we came home if THEY would do the parencentesis at > or = 2.0? And they were wishy washy about yes or no. I guess the hep dr calls for it, but the lab can have its own protocol. Evidently the chance of bleeding during the puncture can be high for folks with Mike's blood profile.

So, late yesterday I had Mike start the diuretics at the level he was taking before hospitalization on the 11th:

Spironolactone 25Mg twice a day
Lasix 20 mg once a day

I know others take more, but I am uncomfortable making this type of decision on my own.

Mike has a weekly blood draw here locally at Quest. Yesterday was the day. Lab said he doc would have the results late yesterday or this morning. No call back.

And now it is Christmas break...I am sure the regular docs are all in the Caribbean drinking pina coladas until New Years. I wish we had gotten a straight answer.

Well, if he gets wierd, off to ER we'll go and the residents on call can do their thing. At least the residents are thorough in a teaching hospital...they test all but your hat size!

Today his was more mentally with it, not beligerant and cranky, actually wanted to go to a movie this afternoon (we did). So we didn't take him in. He isn't wheezing. So far so good.

I call that stable for now.

Hugs,

Carol
Posted 12/24/2010 1:06 AM (GMT 0)

ML, I'd normally suggest increasing the Lasix, but since he was recently in renal failure I wouldn't chance it.  Maybe what he's taking will help a little.  And yes, at this point I'd say he's stable, aside from the edema.

With the Xifaxan, get a doctor's RX saying it is medically necessary.  This should change the insurance's stance so they make an exception and cover it.  You also need this for the manufactuer's program.

Hugs,

Connie

Posted 12/24/2010 4:14 AM (GMT 0)
Now Doug always had low platelets and the local hospital had a standing order for draining him as long as he was given Albumin and his BP needed to be in normal range. Low BP is sometimes a sign of kidney issues so no tapping with low BP, when you get tapped it does affect the kidneys but not hugely unless already compromised. So if hubby was in the hospital for kidney problems they will absolutely not tap him. You are smart to try the fluid pills at a low dose but u may have to give him a little more fluid, not nescesarily water as that can just flush the kidney, jello, popsicles count as fluid....any thing that changes to fluid at room temp is fluid...unsweetened juice avoid to many sweetened products as sugars can put the body into overdrive. When Dougs kidneys acted up he couldnt get drained and I know that is tough, keep legs elavated as much as possible, use a good aloe, balm or even a salve to keep his skin from carcking on his legs. I so wish you the best.... hang in there!
Sue
Posted 12/24/2010 5:55 PM (GMT 0)
Merry Christmas...
Posted 12/24/2010 9:38 PM (GMT 0)
OK, ML happy again.

One of the Nurse Practitioners from UMIAMI called this morning, had reviewed Mike's labs, and provide a sort of "cook book" on the diuretics. Increasing a LOT now when it is bad, taking his weight every day and easing off when the edema episode backed off. Because draining is tough with his INR so high.

This makes the "shall we go to the hospital" question on the back burner again.

He went to his meeting and is actually acting nearly normal this afternoon.

Ho Ho Ho.

Merry Christmas!

Hope you have a quiet weekend at your houses.

Carol

Post Edited (MamaLama) : 12/24/2010 6:01:26 PM (GMT-7)

Posted 12/24/2010 10:49 PM (GMT 0)

Carol, I'm so glad someone finally got back to you regarding the diuretics.  It's always a relief when there is a plan.

I hope things remain quiet through Christmas!

Hugs,

Connie

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