Things I'm hearing about Post Transplant

[casper2636]

Just recently , I've been hearing horror stories about after one gets a transplant. I'm hearing that you've got three months after to find a job and that they stop medical assistance after that and it's up to you to pay for your anti rejection drugs. To top it off, I've hear they cost close to $900 dollars! Is this true? I've also heard you have to be on Dialysis for at least three years to be able to qualify for a transplant if you don't have someone you know to donate a kidney.  I know finding private insurance after a transplant is hard because it is a pre-existing condition. These stories are scaring me to death and I'm led to thinking maybe a transplant isn't the way I want to go. Is there any truth to these things I'm hearing?

[MooseMom]

I'd really like to know where you heard all of this from.  It's hard enough being a CKD patient without the added stress of misinformation.

You don't have to be on dialysis for 3 years to qualify getting  a cadaveric kidney.  Just ask Paris!  The ideal scenario is to be transplanted pre-emptively; that saves everyone money.  Dialysis is expensive.  But 3 years is an average waiting time in many parts of the country, depending on lots of things.

How much your post transplant drugs will cost you depends entirely upon what kind of insurance you have. 

I have a cousin that got a transplant 2 years ago, and he still gets assistance with his bills via his insurance.  But that is in the state of California; I don't know what other states do regarding benefits.

[woodsman]

Insurance will cover so much of transplant meds but as for having to return to work in 3 months is whooey. If you have no insurance then its a another story and you will need to purchase your meds that cost more than 900 a month....

[Lins]

Medicare part B?? I think will cover the anti-rejection meds for 36 months if you have that!

[MooseMom]

Believe me, no hospital will transplant you if they think you can't afford it.  You will go through lots of testing to make sure you are fit enough for surgery, and additionally, the board will ascertain whether or not you have a financial "package" (ie insurance, Medicare) adequate enough to pay for it all, including the post-transplant meds.  In short, they want to make sure that you will survive the surgery and then be able to pay for it!

[kellyt]

That's terrible information.  I have private insurance and I pay for Medicare for 36 months following my transplant.  My Medicare picks up pretty much all my out-of-pocket from my primary insurance, including my yearly deductible.  I wasn't told to "find a job" or anything of the sort.

[FindingNeverland]

I had a transplant 9 years ago, I'm on medicaid and they never tried to kick me off it or tell me to get job and luckily enough they pretty much cover all my expenses. Definitely not true about having to be on dialysis for 3 years before being able to get a transplant, someone might be confusing that with the amount of time some people spend on the list waiting for a donor. 

[jbeany]

Yes, there is kind of a cut off on Medicare at 3 YEARS for transplant patients - but it depends on all kinds of factors, and it only holds true if you have no other medical reasons why you can't work, and it also depends on age, and blah, blah, blah.  You need to get the real info Medicare for your medical condition, age, etc., so don't panic quite yet.  Medicaid is all about income, so it may or may not continue for long after the 3 years. 

Retail cost on transplant meds can be anywhere from $900 to $5000 a month, depending on what you are on.  There are programs for people who can't afford them, but yes, if you can manage any kind of job with prescription coverage in that 3 years, of course you are going to be better off.  Who isn't better off with great insurance? 

See if you can even get listed before you panic, here.  Make sure you are healthy enough to get on the list, and being overly stressed won't help that!  The hospitals make sure you have some way to continue getting meds before they will even list you anyhow.  The first question I was asked when I got "the call" that there was a possible match was not about my current health, my distance from the hospital, or any other sensible thing you would think would matter in terms of getting me and the kidney in the same place, and occupying the same space.  Nope.  First question was if I still had all my insurance.

[Marina]

OMG Casper,  who  shared this   info  with you???  It's  not  only  nonesense, it's  also  NOT   TRUE!!!
Call a  TX  center  and  ask  to  speak to  a social  worker  or  a  TX  financial  rep,  and  get  the  story  straight.
My  co-worker's  wife  had  a TX  two  yrs  ago,  she's  been   getting  SSI  for  over  4yrs.  Of  course  she's  not  working  either. 
Don't  believe  everything you  hear  unless  it's  a  reliable  source  (Dialysis  social  worker  or  a  TX  social  worker)

  The first question I was asked when I got "the call" that there was a possible match was not about my current health, my distance from the hospital, or any other sensible thing you would think would matter in terms of getting me and the kidney in the same place, and occupying the same space.  Nope.  First question was if I still had all my insurance.

I  recently  called  my   TX  center to  ask  if  I was  up  to date  on  my  tests.
They  told me  there  were a  couple  notes  on file  from the  Neph.  I.   I needed  an  echo stress  test in  Oct '10, and 2.   I  was  still  a  candidate  for  transplant, provided  I  still had  medical  insurance. Not  sure  which  is more  important  to them,  but my  guess is   the second note  is.

[LT514]

HI Casper,

Nope, you don't have to start working in three months. Three years is more like it. Then there is the Trial Work Period. You will be eligible for Medicare, which takes care of transplant meds for three years...longer if you have a disability. (9 YEARS if you have a disability!)

I've had three transplants. It depends on your situation. And you can keep fighting if you believe they are wrong. That's what I am doing! 

I def recommend transplant!!! In a second!

Good luck!

[casper2636]

It's comforting to hear your replies, but I still worry. I have a history of anorexia nervousa and am 5'8" and only weighing 96lbs. Will this cut me out? It's not that I'm afraid of gaining weight anymore, it's that I'm afraid of breaking the renal diet! I don't won't to add more harm to the damage I've already done to my kidneys. Plus, I've been allergic to the epogen, and have been getting blood transfusions every month for the last year. They just started me on Aaranesp, so hopefuly this will work. I can't wait to go back to work, but all I have is Medicare and I'm so afraid this will stop,and that no company will put me on there medical care program...can this happen?

[okarol]

You should be eligible for Medicare as long as you are on dialysis.

[casper2636]

I thought once you started working, transplant or not, that they reduced, or took away your medicare. I worked the first summer that I got medicare and they took it away. I was only working 30 hours per week and was on D. It was only a $10 an hour job riding professional race horses. What was up with that?

[jbeany]

Are you sure it was Medicare they took away and not SS disability?  If you have reported income, the disability payments go down accordingly.  Medicare for D coverage should not be affected by income or savings.  Or are you confusing Medicare with Medicaid?  If you had Medicaid, that would have been taken away if you had an income, as you only qualify for that if you don't have income or savings.  Medicaid pays for what Medicare doesn't, and can also pay for part of Medicare.

[Marina]

You  can  still work  and  get  MEDICAID,  well........depending on how  much you're  making  that is.

[lola]

My husband works 40hrs a week is on D and gets Medicare part A and B, our private ins is dropping down as his 2nd ins in 2 months, so YES you can work and get medicare. FYI we are not even paying for Medicare someone else is since he still has to keep our private ins for the kids and myself, our social worker got us in touch with AKF and they are paying.

[okarol]

Are you sure it was Medicare they took away and not SS disability?  If you have reported income, the disability payments go down accordingly.  Medicare for D coverage should not be affected by income or savings.  Or are you confusing Medicare with Medicaid?  If you had Medicaid, that would have been taken away if you had an income, as you only qualify for that if you don't have income or savings.  Medicaid pays for what Medicare doesn't, and can also pay for part of Medicare.

That sounds correct, you lose the Social Security disability if you make over a threshold dollar amount, I have to find what the number is, I have it somewhere. Income does not affect your Medicare ligibility.

[FindingNeverland]

"How your earnings affect your SSI payments

The amount of your SSI payments is based on how much other income you have. When your other income goes up, your SSI payments usually go down. So when you earn more than the SSI limit, your payments will stop for those months. But, your payments will automatically start again for any month your income drops to less than the SSI limits. Just tell us if your earnings are reduced, or if you stop working.

If your only income besides SSI is the money you make from your job, then we do not count the first $85 of your monthly earnings. We deduct from your SSI payments 50 cents of every dollar you earn after the $85 deduction.

Example: You work and earn $1,000 in a month. You receive no other income besides your ­earnings and your SSI
$1,000
– $85
$915 divided by 2 = $457.50

We would deduct $457.50 from your SSI ­payment.

You may be eligible for a “plan to achieve self-support” which allows you to use money and resources for a specific work goal. These funds do not count when we figure out how your current income and resources affect your benefit amount."

Courtesy of http://www.ssa.gov

[casper2636]

I guess I did mistake my Medicaid and my Medicare, but even still, Medicare is saying if I went back to work I'd be making to much to qualify. I have no savings or ownings of value and am really confused on what they are putting their basis on. My Medicare is what I live on and my rent is dirt cheap only because I live with my family. A transplant sounds great, now that you all have set me straight, but as for the economy, I'm terrorized to be able to find a job and get help with medicine after the hoped upon transplant. Has anyone gotten a transplant and got stuck in that way? Is it possible? And can I be denied if I have no way to afford the meds after the three years?

[kellyt]

Transplant is what qualifies you for Medicare (for 36 months anyway).  It doesn't matter what you make.      That's never been an issue for me.  I receive a statement from Medicare every three months and I mail them $300+ dollars.  In return they pick up my entire yearly deductible and most all my out -of-pocket expenses.  I'm very thankful and I'm terrified of losing them in Nov 2011!!!
I know dialysis qualify too, but I don't the know the specifics of that.  Sorry. 
Good Luck.

[RightSide]

Just recently , I've been hearing horror stories about after one gets a transplant. I'm hearing that you've got three months after to find a job and that they stop medical assistance after that and it's up to you to pay for your anti rejection drugs.

I certainly hope that's not the case,

because I know plenty of healthy people who haven't been able to find a job in less than 3 months in this bad economy we've got in the U.S..

In fact, this year, the median duration of unemployment rose to 34 weeks--nearly 8 months.

http://i52.tinypic.com/25zmgrd.jpg

[cariad]

I guess I did mistake my Medicaid and my Medicare, but even still, Medicare is saying if I went back to work I'd be making to much to qualify. I have no savings or ownings of value and am really confused on what they are putting their basis on. My Medicare is what I live on and my rent is dirt cheap only because I live with my family. A transplant sounds great, now that you all have set me straight, but as for the economy, I'm terrorized to be able to find a job and get help with medicine after the hoped upon transplant. Has anyone gotten a transplant and got stuck in that way? Is it possible? And can I be denied if I have no way to afford the meds after the three years?

Hi casper,

I just began working between 30 and 40 hours a week, and had a long talk with Social Security about this.  (that is what you are living on, not Medicare). I would suggest phoning Social Security. If you get a knowledgeable person (as I did) then you can ask about all of the particulars in your situation.

Medicare is insurance, and since you are on it for a type of disability (ESRD) income makes absolutely no difference. You will have it for 3 years post-transplant. Medicaid is income based.

You can make up to $1000 per month without losing your SSDI (disability income). Once you hit $1000, you have to make that much for at least 9 months during any 3 year period before they will stop your SSDI. However, after a transplant, they assume you are no longer disabled, so if that were to turn out to not be the case, you would have to argue with them about it.

If you have Medicare part B, then the two major immunosuppressants will be totally free under that program for one year. Sadly, it does not matter if you cannot afford them, this does not go into anyone's decision about whether or not to extend benefits. The current system is set up (inadvertently) to motivate people to stay on dialysis, as you will not lose your Medicare so long as you are on dialysis. It's fiscally irresponsible since long term dialysis costs so much more than a transplant does.

Do not be afraid of transplant! Not for this reason. Different states have different programs to help - check into your states Medicaid requirements, and if you find you cannot afford meds, call the companies direct or talk to your doctors about options. If you have no prescription plan, perhaps you need to get onto Medicare part D as well. Have you had your eval? Also, remember that there are new health care laws coming, in fact, some have already started. Read about The Affordable Health Care Act to see how things will change in 2014 (and have already started to change for those with pre-existing conditions). http://www.healthcare.gov/law/provisions/preexisting/index.html

Hope this helps!

[thegrammalady]

if you are under 65 you qualify for medicare because you are on dialysis. it doesn't matter if you work or not. ssdi or social security disability is different and there is an income level. in fact there are several levels. because i don't work and my disibility amount is under a certain level social security pays for things they would not pay for if i worked, like my medicare part b premiums.  (oh where is spellcheck when you really need it?)