need to know about the cost

[idahospud]

I just herd that medacer will only pay 80% of the cost for a live donor . So is that right or not? And what do peppol do to pay the other 20% of the cost ? I'm not there yet but wont to be ready and all that good stuff . I was tolled the Pt's cost after insurance was around 60,0000 . I am versus as to if this is right or dot ? thanks ahead of time  Carol

[Rerun]

Yes, that is true.... sometimes more if there are any complications.  If you have other health care insurance then they will pay the 20%.  Usually you don't even get listed if you can't pay for the transplant and afford the drugs to keep the kidney.  Another thing you should know is Medicare only pays for 3 years of anti-rejection drugs although people are trying to get that extended.  Those are about 40,000 a year depending what you are on.

Some people hold events to raise money.... like Spaghetti Feeds and Car Washes.

No!  They have you by the balls!  Either stay on dialysis so they get paid by Medicare, or get a transplant so you can WORK the rest of your life to pay for the drugs etc.....

                                                     Best of luck!     

[idahospud]

thanks rerun for the scoop but can i tell you just how much that rilly sucks !!!! Its a know win .  is gitting a codaver kidney as much red tape and shit? I do know that the Wait for a codaver is 7+ years it fells like theres on win here thanks again Carol

[Rerun]

I don't know if you qualify for Medicaid?  I don't, so don't know what they can do.  I know a lot of people have transplants and they ALL can't be rich.  Their must be other programs.  I hope someone else will post here that has more information.

It does SUCK for me because even with my secondary health care insurance... because I'm on disability.... if I get a transplant then I'm considered CURED and am kicked off disability after 1 year.  Then I'm supposed to go get a job that provides FULL benefits that possibly has a pre-existing clause so they would take a kidney transplant patient.  The federal government is where I worked and they are the best for transplant people because they have great insurance, but at 50 do you think I'll get hired?  I just can't take the chance, so I'm on dialysis the rest of my life.

That is ok, because I had my transplant and it lasted 17 years so I had a short time of a good life.

[pelagia]

I found a list of organization that may provide funding to help with the costs of transplantation.  These links work:

National Transplant Assistance Fund ~ 1-800-642-8399 
http://www.transplantfund.org
This organization helps patients and families raise money within their community to fund transplants
and the recovery from transplants.  NTAF also offers some grants.

Children’s Organ Transplant Association (COTA) ~ 1-800-366-COTA
http://www.cota.org
This organization offers assistance in raising funds for children and youth in need of a transplant.   
 
Transplant Living ~ 1-888-894-6361 ~ Offers a Financial Resources Directory
http://www.transplantliving.org/beforethetransplant/finance/directory.aspx
 

[st789]

Not an easy decision.  Yeap, you have a good run Rerun with your transplanted kidney.

[boxman55]

I don't know if you qualify for Medicaid?  I don't, so don't know what they can do.  I know a lot of people have transplants and they ALL can't be rich.  Their must be other programs.  I hope someone else will post here that has more information.

It does SUCK for me because even with my secondary health care insurance... because I'm on disability.... if I get a transplant then I'm considered CURED and am kicked off disability after 1 year.  Then I'm supposed to go get a job that provides FULL benefits that possibly has a pre-existing clause so they would take a kidney transplant patient.  The federal government is where I worked and they are the best for transplant people because they have great insurance, but at 50 do you think I'll get hired?  I just can't take the chance, so I'm on dialysis the rest of my life.

That is ok, because I had my transplant and it lasted 17 years so I had a short time of a good life.

I thought about this too. If I get a transplant and the Goverment then determines that I am cured, will I have a chance of being hired at 54 with no right leg and a transplant. Do you take that chance or stay with dialysis. Maybe I should do a poll...Boxman

[monrein]

It does SUCK for me because even with my secondary health care insurance... because I'm on disability.... if I get a transplant then I'm considered CURED and am kicked off disability after 1 year.  Then I'm supposed to go get a job that provides FULL benefits that possibly has a pre-existing clause so they would take a kidney transplant patient.  The federal government is where I worked and they are the best for transplant people because they have great insurance, but at 50 do you think I'll get hired?  I just can't take the chance, so I'm on dialysis the rest of my life.

That is ok, because I had my transplant and it lasted 17 years so I had a short time of a good life.

I find this to be a tragic situation.  50 is not old and transplantation is cheaper in the long run (assuming it works of course) than dialysis.  There are people who can't have transplants for medical reasons but to want one and not be able to have one because of the insurance issues strikes me as sad and depressing.  Our health care system wants us to have transplants so that we will cost the system less.  We also seem to grasp the idea that most (there will always Munchausen syndrome weirdos I suppose) sick people do not choose to be ill and need treatment.  I for one, and I know many who feel the same way, would much rather be healthy and working hard to pay my high taxes than spend my days on dialysis waiting for a transplant.  I'd be thrilled to have my money going towards someone else's treatment, whether for cancer or dialysis.  I'm also glad I don't have to be organizing spaghetti suppers or any other kind of begfest in order to get my unsolicited medical needs met.  Health care that has people like Rerun or Boxman fall through the cracks just strikes me as not quite right.

[paul.karen]

Our health care system wants us to have transplants so that we will cost the system less.

I so disagree with this statement..


If this were true then i feel such things to get people off cigarettes like chantrex, the patch other pills ect ect would be covered under insurance plans.  Stop the habit before it causes life altering issues such as asthma, lung disease and many other ailments.  But my feelings are they wont cover such drugs due to the fact it would keep people out of hospitals and they in fact may loose money in the long run.  Unless someone can tell me another reason an insurance company wouldnt cover such items as to get people to stop smoking.

This is solely my opinion

[boxman55]

First off, I am not sure what side of the discussion you are on P&K. The reason this is foremost on my mind is I have my annual meeting with the transplant surgeon on Thursday to discuss my continued eligibility to be listed. It is not that I won't go see him but again in my mind I am dammed if I do have a transplant and dammed if I don't. What do you do?...Boxman

[monrein]

Our health care system wants us to have transplants so that we will cost the system less.

I so disagree with this statement..


If this were true then i feel such things to get people off cigarettes like chantrex, the patch other pills ect ect would be covered under insurance plans.  Stop the habit before it causes life altering issues such as asthma, lung disease and many other ailments.  But my feelings are they wont cover such drugs due to the fact it would keep people out of hospitals and they in fact may loose money in the long run.  Unless someone can tell me another reason an insurance company wouldnt cover such items as to get people to stop smoking.

This is solely my opinion

I live in Canada and our system is very different than yours in the US.  We have "free" clinics, "free" flu shots, we subsidize medications for people who can't afford them and we also spend a fair bit on education and prevention of illness models.   Of course, we all know that nothing is free, not even lunch, so I should really say that we pay for these things with taxes, just like education, roads and librairies.   My living donor who lives in Florida will be reimbursed for expenses incurred during donation up to a maximum of $5,500, including air fare and hotel accommodation.  We will all save money and I will have much more of a life if we can get me off dialysis.
Even our seat belt laws and motorcycle helmet laws have something to do with our publicly funded health care system because if you crash and are injured we all pay for it so you technically lose the freedom to injure yourself expensively.  This all makes sense to me and although I'm a dual citizen of the US and Canada I'm happy I chose to live here and have never lived in the States, although all of my family do.  This does not mean that I don't appreciate many things about the US, I do, but I do not like the for-profit model of health care.  I find it nuts.

[idahospud]

I think a poll is a good thing Boxman I went to the DR. today and he thinks its time for a fistula and to go see the transplant teem that was part of why i started this post. Then i read some of the post and feel so bad for Boxman and Rerun along with all the others in this do think are . I do appreciate all the information i have got . Are health care sistom needs a lot of help. Carol

[G-Ma]

Boxman, Rerun and others.  Age, ins, etc are also the reason I chose not to pursue a transplant, now I'm finding out if I take a trip to visit family or just for fun I can be kicked off disability because if I'm well enough to travel I'm well enough to work is exactly what I was told.  I was told I have to stay in my physical area all the time.  Talk about prison.

[Chris]

Boxman, You have diabetes right?
I think I read that somewhere, but not 100% sure. Anyway, have you tried for disability from Social Security? I am pretty sure you would qualify with dialysis and loss of a leg. I was given Disability due to blindness in one eye and being on dialysis. I don't have a yearly review either, eeven after transplant. I not trying to sway you towards transplant, just hoping you looked at otherservices the gov't offered. I'm not sure if idahospud would qualify either since I do not know the background. So idahospud if you have other medical issues, SSDI may benefit you.

[paul.karen]

Sorry for the confusion Boxman.

I am all for anyone getting a transplant if that is what they seek. And the sooner the better.

I just dont think the medical community does anything to save the system money or to keep charges down.
Thus my little rant about not giving smokers medicine to stop them from smoking. 
My insurance will pay for scans-chemo-tests of all kinds if i were to get cancer.  Which costs thousands of dollars or more.  But wont give me pills to prevent the smoking sensation and maybe help me quit which would save them money.


Yes it was of topic sorry...........

A poll would be good i think.
It is a tough decision to make.  One i never really thought of before.
Depending on ones physical condition would help make that choice i guess?

[boxman55]

Thanks P&K

Chris, yes I have diabetes and I get disibility monthly based not on diabetes, amputation, vision loss in one eye, but for ESRD. I also have Medicare. The rules of Medicare in my mind do not make the decision to have a transplant easy. Mainly because after 3 years you are on your own for the daily rejection drugs and because the Goverment feels you are cured after a transplant, the disibility payments stop. Who is going to hire me knowing my conditions and do I want to throw myself out to the ditch waiting for the hire to come? ...Boxman

[paris]

Idohaspud, when you go through the transplant evaluation, you will meet with a financial co-ordinator.  I am listed at two centers and both co-ordinators have been very helpful.  They look into everything and try to help find solutions for the costs.   Some transplant centers are teaching hospitals and absorb some costs.  I felt better after they went over everything with me.

Boxman, good idea about a poll.  I wonder the same thing.  Is it better not to get the transplant so you can stay on disability? At a certain age and physical condition, maybe saying no to a transplant is a good idea.   No one should have to make that decision. There are certainly odd rules for kidney disease. 

[Chris]

Boxman, you did get Medicare Part D right?

Anyway, I still have Medicare and Disability after 3 years which worried me at the time also they way I understood it and was told by a rep. Apparently they were wrong. With Medicare Part B my immunos are paid, Part D covers my other meds. And I'm sure you wouldn't loose Medicare or Disability if you went that route. Here the NKF puts on seminars each year about transplants that informs you about pre transplant and post transplant patients. It goes over different topics including Social Security issues and Medicare..

The troubl is finding the right person to give you correct information over the phone, because the person on the other end has no idea what your talking about.

[pelagia]

Boxman - I have a vague recollection of the Social Security person we met when Stephen went on dialysis telling my husband that "disability is almost automatic when you are on dialysis and some people end up staying on after transplant."  Sounds like it's worth a call, or an appointment with Social Security.  Or maybe the social workers at the transplant clinic can tell you.

[boxman55]

Yes Chris I have medicare A&B and part D thru Humana my secondary insurance (the 20%) is thru AARP United Healthcare

I need to research this more as you mentioned pelagia because it is very important to know all the facts so you can make a decision that will effect your life, medically and your living situation financially...Boxman

[Rerun]

I have asked my Nephrologist if he can guarantee me disability after a transplant and he said "no."  I have bad vision, but I've always had bad vision, so essentially I'd be cured with a transplant.  My worry would be trying to find a job with full benefits.  I would not have quit my job except I needed to move home where I had more help with dialysis and the wait list was so long.  If I could have just had the transplant THEN I could have just kept on working. 

Plus I have a 96% PRA.  I would never get a match.  All the arrows for me point to NO Transplant.  OR if I was married to a rich husband that would be different also.  Again NO.