The Cost of Survival??

[Scarlet]

OK let me start this off by stying that I am not trying to be offensive to anyone or any Country, I am genuinely curious.

First part of the question is: How much will it cost you, in the country that you live in to have transplant surgery, and can you get help to pay for it. 

Second part of the question is: Once you have the transplant what financial aids are available to you then.

OK, now the reason that I ask.  My husband had a fantastic opportunity t work in the US and he was forced to turn it down because of my health. We could not afford/ or get medical insurance as I have stage 4 PKD and had 4th stage colon cancer when I was 30. 

In Canada if you need to leave your employment due to D you can qualify for Canadian Pension Plan disability benefits. If you are so lucky to have a transplant, which our government pays for, one year after transplant, if all is going well your CPP disability benefits stop, as you are no longer considered disabled. 

What then, are you really well enough to go back to work?  Will anyone hire you? Can I afford to live?? I do not want money or lack thereof to be the reason I would have to say no to a transplant.....

It just got me to thinking how does the rest of the world work? Can we afford to be healthy again once this has taken over our lives??

[jeannea]

Short answer is no. Things will never be the same once this has taken over your life. I've been through kidney disease and transplant while still working. Now my transplant failed and I'm not able to work. I'm in the US and trying to deal with my medical insurance ending and Medicare (the federal government program) starting. I keep getting denied for benefits and the people in the social security office lie to me and give me a different answer every time I ask the same question. It's really tough for everyone. The insurance thing is a real mess (not trying to start a political discussion).

[MooseMom]

I'm sorry, but the truth is that if you have ESRD and are in the US, you are royally screwed.  If you have private medical insurance, they kick you off after 30 months because you are not good for their profit margin.  Then you're forced onto Medicare which basically means that the American taxpayer is paying for your survival.  If you are still able to work despite your health issues, then at least you can console yourself with the notion that you are still contributing to society and that you are paying your own way and are exercising "personal responsibility."  If you are unable to work, then you are at the mercy of the pervailing belief that you are getting "entitlements" and are taking away from "real people".

I am not sure why anyone would get a transplant if, after a certain period of time, they were still not able to work (unless the kidney is failing or there are other issues).  I would assume that people go through the trauma of surgery so that they CAN work/live a normal life as they see fit.  I guess you can ask the same question of someone who has just had, say, major cardiovascular surgery or some other big procedure.  Would anyone hire THAT person?  I know that American law prohibits asking certain health questions during the hiring procedure, so if you've had a transplant and are applying for a job, I don't think the issue would even come up (well, it's not supposed to!).

[jbeany]

I'm in the US and on Medicare.  My transplant cost me nothing.  But, the day you have the transplant starts the ticking clock for the 3 year count down.  After 3 years, unless you are receiving it for another reason, the Medicare coverage ends.  This means no help with the immunosuppressants.  At that time, you really, really need private insurance.  I'm back at school now, hoping that I graduate and get a decent job before my 3 year alarm goes off.  I'm also hoping that I can manage to hang on to the transplant long enough to get a tiny little house and get it paid off, too.  If I do have to go back on disability and welfare then, at least I won't have to try to pay rent - and they won't make me sell the house to get aid.  Oddly enough, it makes no sense for me to keep any money in savings.  If I have funds saved, I have to spend through them before I can get help.  If I've put them all into paying off the mortgage, though, I can get all kinds of help.  So I'll be setting up my finances so I owe no debt whatsoever, but also have nearly zero savings. It's a weird system, but it's what I've got, so I'm trying to work with it.

As for getting hired with a transplant, I admit I'm relying on the average person's uninformed belief that a transplant is a cure.  It's impossible to hide it when the professors and fellow students at school who are aware of it are also the network I'll be using to get a job.  But really, if they hire me and my health fails, it's not like I'll be the only employee they have ever had who needed to quit for some reason.

[Scarlet]

One of the issues that I was considering in the "will anyone hire me afterwards" is the fact that I am 42 soon to be 43 and an executive assistant at an investment house and I do not know if anyone WOULD want to take me on if I had been out of the work force for a few - several years?? 

Don't get me wrong, I work for a FAANTASTIC company right now.  When I told my boss that my kidneys were declining MUCH faster and sooner then any of the doctors had ever thought, the first thing she said was "tell me what you need from me"   

It is really strange, I have worked all my life and only once ever claimed any kind of disability and that was when I had cancer treatments, but yet I still feel like everyone will judge me if I go on disability insurance......what is wrong with us that we feel that way??

[The Lone IT from HM]

Coming to the US from anywhere would be tough if you have a medical problem.  Going to Europe would be OK, we know or know of several who left here to go to France because of medical problem they could pay for here.

[MooseMom]

It is really strange, I have worked all my life and only once ever claimed any kind of disability and that was when I had cancer treatments, but yet I still feel like everyone will judge me if I go on disability insurance......what is wrong with us that we feel that way??

I really do believe that we have all bought into this idea that if we can't take care of ourselves without government assistance, then we are somehow letting society down.  We cross the line from being "rugged individualists" to "welfare queens".  If we receive some kind of benefit, well that must surely mean we have taken something away from the more worthy, "responsible" people.  Too many people hear the word "disability" and make it synonymous with "laziness and fraud".

Just my take...

[Scarlet]

I agree MM!  There is a lady (LW) that I work with, that is currently off on disability for a different illness, that when she first applied for our COMPANY SPONSOURED disability insurance they denied her. 

When LW challenged the decision with more letters from her doctors she was told that the insurance company quite often denies the first claim if it is for anything other then Cancer.  I was so shocked and freaked out, as I will most likely be leaving the company the same way. 

Then over the next 3-4 months the insurance company hounded her like crazy, at one point the rep asked her who was doing her laundry if she was in such bad shape.  L told her that she did the laundry as her husband was undergoing his 4th skin cancer treatments and there was no one else!  The most stunning statement was made by the insurance rep at that point I just about fell out of my chair when LW told me.  The rep stated that if LW could do spend her day relaxing and doing laundry then she certainly is well enough to come back to work or if she was not well enough when did LW not hire a house keeper to help out?!?!  Are you freaking kidding me, they are trying not to lose their house!!!  LW ended up with more stress because of the way that she was being treated then when she started out. 

I refuse to beg for benefits that I have paid into!!!   

[Tracy]

I agree MooseMom.  and Scarlet.  I am 42 and an assistant for a high school principal.  They have been so gracious to me for all my doc appts.  I did have a transplant and a removal all in Feb of last year.  $300,000 on private insurance.  It only cost me $1500.  But, now I am on the list again and hoping for a double transplant again.  I worry that I am going to have to go on disability.  I am engaged and don't want to let my fiance down either.  It is all very scary.  I appreciate this thread.

[MooseMom]

It is important to remember that insurance companies are for-profit corporations.  Now, there is nothing wrong with making profit, but the problems comes from the fact that we do not choose to go on dialysis like we might choose to purchase a new pair of shoes.  Not only that, but we usually do not have the luxury of shopping around for the best dialysis deals.  There is no "buy one treatment, get one free".  Free market principles don't really apply to medical care unless we as a society decide that anyone who gets sick or hurt is just out of luck.  So, a corporation is going to look to maximize income and minimize outlay.  An insurance company is going to try to increase premiums while decreasing the claims they pay.  So they will do anything they can to deny a claim.  Some years ago when I first moved back to the US, I was not yet working nor was I yet married, so I bought a one year health care policy.  I ended up getting an infection that required a 5 day hospital stay, and the insurance company literally made up reasons not to pay the claims.  They literally told bald-faced lies, and I had to sue them.  I won, and they were required to pay all claims plus pay the maximum in punative damages.  To protect yourself, keep meticulous records and research their appeals system.

The other way to protect yourself (and this is really crucial) is to not let yourself buy into the myth that you are a scourge on society, that your disability is anything more than a physical obstacle.  It is not a value judgment, so you must not let other people judge you.  The people that judge you harshly are those who are lucky enough never to have needed dialysis or cancer treatment or any help from anybody ever, and it is rare for anyone to get through their entire lives without an illness or an accident impeding their way.  We are all fighting for our lives, and it is scary.  Far from being needy, lazy imbeciles, we are driven to make the most of our lives while facing some of the biggest obstacles known to man.  Don't let anyone EVER rob you of the sense of accomplishment you should feel for just getting through the day.  Most of us will find that our colleagues, friends and families are supportive; it is usually the relative strangers who judge the most harshly, and these are the very people who really don't matter so much.

[RightSide]

I'm sorry, but the truth is that if you have ESRD and are in the US, you are royally screwed.  If you have private medical insurance, they kick you off after 30 months because you are not good for their profit margin. ...

I am not sure why anyone would get a transplant if, after a certain period of time, they were still not able to work (unless the kidney is failing or there are other issues).  I would assume that people go through the trauma of surgery so that they CAN work/live a normal life as they see fit. 

I believe that one of the provisions of the new Federal health care reform law is to eliminate the lifetime caps on coverage, which is the main reason why folks on dialysis might find their policies canceled eventually.

As to why someone who doesn't work would still want a transplant, it's because average life expectancy is shortened considerably by dialysis; and because some conditions, like dialysis-related amyloidosis, are likely to catch up with you eventually even if you have regular dialysis.

Almost no one wants to die sooner just to save some money.

[RightSide]

I agree MM!  There is a lady (LW) that I work with, that is currently off on disability for a different illness, that when she first applied for our COMPANY SPONSOURED disability insurance they denied her. 

Me too.

I had a long-term disability insurance (LTD) policy, paid by my employer.

When I started dialysis, I figured it was time to file a claim on my LTD policy. After all, Social Security considers me disabled, right?

My claim was rejected.

The reason:  Unlike Social Security, the private LTD insurer said that I wasn't disabled enough.  They had asked me if I could still feed myself, dress myself, and go to the bathroom by myself.  I had honestly answered "yes." 

"Gotcha!  You're not really disabled, RightSide!  Claim denied!"

Evidently, a number of these private LTD policies define "disabled" as "unable to care for oneself."

[jbeany]

For Social Security Disability, if you think it counts as welfare, look back at your old paychecks.  You paid for it, darn it.  It's insurance, just like any other.  If you have house insurance, you pay and pay and pay and don't collect unless something goes wrong.  Same for SSD.  Remember, how much you are entitled to per month is based on how much you paid in.  Just because we've had the misfortune to actually need it doesn't make us lazy! 

[Riki]

In Canada, you have pay in at least 5 years before you can qualify for a CPP disability pension.  I hadn't worked that long when I started dialysis this time, and was actually unemployed for my first year.  I got a job in a call centre in 2005, and due to a clerical error, I did not get in on the company insurance plan.  I worked there for 3 years, and barely got the 5 years in before I ran out of steam.  Because it goes by what you pay in, I don't get much, less than $600 a month.  If I had to pay a rent, I'd be screwed.  My mom loves me enough that she doesn't charge me.

[MooseMom]

RightSide, I'm sorry...I think my post might have been unclear.  Under our private insurance policy (through my husband's employer), if you are on dialysis, the policy will pay for the first 30 months of treatment.  Then, Medicare will take over as my primary insurer with private insurance picking up the excess 20%.  I don't believe that this has anything to do with any lifetime caps.  My current insurance actually does not have a lifetime cap, but their policy regarding ESRD is as I described above.  I think this is fairly standard procedure.  I am not aware of any private insurance policy that will cover dialysis indefinitely, which is why ESRD patients are covered by Medicare even before they reach retirement age.

As for working after transplant, I apologize again if I was unclear.  What I meant to say was that people who want to have a transplant are willing to go through all of the hoops transplant entails so that they have a chance to regain a normal life which would include the ability to work if possible.  Part of having a better quality of life is being able to return to work, or at least have the CHANCE to do so if that's what is appropriate.  And of course it is a better treatment option than long-term dialysis for most, though not all, people.

As for the definition of disability, that's a tough one.  Such definitions will almost always work in the company's favor and not in yours.

[okarol]

Evidently, a number of these private LTD policies define "disabled" as "unable to care for oneself."

Doesn't the fact that you cannot pee without the aid of life-support qualify?
My husband would have fought that denial of benefits to the bloody end. LOL

[RightSide]

Evidently, a number of these private LTD policies define "disabled" as "unable to care for oneself."

Doesn't the fact that you cannot pee without the aid of life-support qualify?
My husband would have fought that denial of benefits to the bloody end. LOL

Unfortunately, I would have to be honest about that too.  My kidneys still retain just enough residual kidney function to produce at least some urine:

"Gotcha!  Claim denied!  Try again!"

[Bruno]

I really hesitate to involve myself in this thread because what I have to say won't help, but I'm going to persist because it will give you the basis for a comparison. I'm from Australia and consider this...I had open heart surgery 6 years ago and it did not cost me one cent. This year I went into dialysis because my kidneys failed and was offered training so that I could do dialysis at home. Now I'm at home with my own machine and all the supplies I need. All without paying one cent.
Our disability schemes have no cut out mechanism.
I think, for what it's worth, and watching what is said on IHS, that the USA health system has limitations that that often produce less than the best outcomes.

[brandi1leigh]

I agree MM!  There is a lady (LW) that I work with, that is currently off on disability for a different illness, that when she first applied for our COMPANY SPONSOURED disability insurance they denied her. 

Me too.

I had a long-term disability insurance (LTD) policy, paid by my employer.

When I started dialysis, I figured it was time to file a claim on my LTD policy. After all, Social Security considers me disabled, right?

My claim was rejected.

The reason:  Unlike Social Security, the private LTD insurer said that I wasn't disabled enough.  They had asked me if I could still feed myself, dress myself, and go to the bathroom by myself.  I had honestly answered "yes." 

"Gotcha!  You're not really disabled, RightSide!  Claim denied!"

Evidently, a number of these private LTD policies define "disabled" as "unable to care for oneself."

I've been lucky so far. I had disability insurance through my employer and it was approved...for now. I have a two year clause that says I get checks if I am unable to perform my job. After two years, the standard changes to able to perform any job.
This is especially important because I am/was a Texas teacher and in my school district we don't pay into social security, so I am not eligible for SS benefits of any kind. I'm still not sure what I'm going to do when my disability runs out.

[MooseMom]

I think, for what it's worth, and watching what is said on IHS, that the USA health system has limitations that that often produce less than the best outcomes.

Actually, statistics bear this out.  It's true, especially in the dialysis field.

[Ken Shelmerdine]

What happened to Obama's social healthcare proposals. Are they/will they take place?

[The Lone IT from HM]

Some are online as of just a few months ago.  But with the last election, and the lies that people were putting out, we will see how the plans holds up.

[MooseMom]

What happened to Obama's social healthcare proposals. Are they/will they take place?

Doesn't look like any kind of public option will be available.  The bits that have already come into play (like being able to keep your kids on your insurance until they are 26) are going to be very hard to "defund", I think, because people actually like those bits.  What looks to be the next salvo has been put forward for consideration by Texas, which is thinking about pulling out of Medicaid.  Each state has the right to implement health plans as they see fit, and some more conservative states are seriously looking to do the same as Texas is thinking about.  The downside to that is that if a state pulls out of Medicaid, they also lose the funds the federal government puts up.  But then again, if people want to start reducing the national debt, then perhaps more states will pull out of federally-matched programs.

[dyann]

Ok I have to say I feel lucky I am on Disability my company offered long term for their directors, so I receive 60 % of my pay then u do have to apply for social security as well , then whatever they pay my LTD pays the difference.  I was approved for SS benifits within 2 months.  very surprised that one of you stated that u keep getting turned down. I was told that ESRF is usually never denied from SS do to the severity of the illness. but I did have a company help me they did all the foot work the name is Allsup.  but I am receiving LTD and SS benifits now. I do have admit that I get embarrassed when I tell people I am on disability,  I have always worked and felt like people took advantage of the welfare and stuff and here I am having to use it.  is a mind set I have to change. I sometimes feel like a loser because of being on it.  but I have to do whats right for me and my children so u do what you have to do.  as far as work I too worry about getting a job after all I am 46 47 in december and who knows how much longer before my transplant,  but what I do know  is I amgood at what I do