transplants

[anonymous]

I would appreciate any help I could get on how to finance lung transplant. My son is 32 years old and on disability. He is not even on the transplant list at the present time because he has no insurance and his disability does not go into effect for several more months. He has a phone call in to Medicaid. But how do CFers get lung transplants if they have no insurance? Does Medicaid or Medicare help pay for such things? CIDC does not cover that evidently. We just do not know what to do.

Mother of cfer.

 

[anonymous]

On disability I thought Medicare kicked in and many hospitals will work with Medicare. You can also try raising funds through the National Foundation for Transplants (located in TN). I know some state Medicaid will cover the cost. I live in Idaho and they recently paid for a little 4 year old (not CF) to get a several organ TX. You can be listed before you have the funds to cover the actual TX.

CF 54 TX cepacia

 

[anonymous]

his medicare should come in to effect after his 24th month on disability. In the mean time, he can still be placed on a transplant list without funds to pay for it at this time. Have you looked into the possibility of getting him onto insurance through you our your spouse? Other than that, there is the lungs for life foundation, the milan foundation, you can start doing your own fundraisers, have you tried the state medicaid yet?

 

[anonymous]

To the previous post, you can't be put on the list until you've been evaluated & you can't be evaluated until you can put up the cash or if you have insurance in place that will cover the evaluation. You're right, they could raise funds for the evaluation & hope that the transplant isn't necessary until Medicare kicks in. Medicare will not cover anything after the tx unless they paid for the transplant in the first place.
Like someone mentioned, try your SSI office to see if you can get State medicaid or even see if your state has a "crippled children" type program available until the Medicare is in effect.

 

[anonymous]

Thanks all for your information. My son is applying for crippled childrens again, but it is pending. CIDC does not cover transplants. Thanks again. Pam.

 

[anonymous]

Move to a state that covers the testing and TX through medicade, perhaps Calif. If he is in jail in Calif. they will cover all cost including a TX at Stanford. The head of the corrections department told ABC news a 2 years ago, that "no amount of money or care is too much to spend on a Calif. prisoner". At the time a man in need of a heart TX was thinking of going down to try and get in prison by robbing a store and waiting for the police.

 

[anonymous]

Sorry, that is not the kind of help that I am looking for. CF is hard enough to live with everyday without there being any other problems in the person's way. I have to tell you, I am a bit offended at your reply. But I guess it take's all kinds.

My family knows that life is in God's hand anyway and if God provides a way then, well we will respond. Otherwise we live each day, one day at a time, doing all the things that we have learned from research, friends, doctors, etc.

Mother of a 32 y/o CFr.

 

[anonymous]

Pam,
Don't let that last post bother you, someone just hasn't found a constructive way to epxress their frustrations about life.

A few questions,
When did your son's disability go into effect, month and year?
Have you done research on the DSHS program in your state?
What state do you live in? I'll see what I can find.
Does he have a CF doctor that he sees regularly?
I hope I am not confusing him with another person on this site, but was he married and recenlty divorced?
If so, what have the courts decided about his wife providing spousal support and medical coverage-If I am remembering the right person
it can be court ordered, especially if he hasn't been working for a while
Have you looked into you, or your spouses insurance and what type of coverage they offer? some carry an unbrella for disabled children.

Good luck pam and something will work out for you, I believe it!

Julie

 

[anonymous]

To 32 year old mother

First of all, moving to another state to access the funds to save your life is a reality for many in this country. What can I say if life is not worth moving to access the needed help for those not weathy enought to afford the life saving chance. I moved accross the country to have a TX (2,600 miles).

Second, that states will transplant someone in jail (fellons) and allow someone with a genetic disease without the fund to be left out in the cold. I simply reported the facts and feel free to research the story and indeed some went to jail to live. Sad, yet hardly my idea. You asked for options. Perhaps if CF's raise a political furror in Calif. other will get the fair treatment they are due. It is not my idea to give preferance to fellons over good citizens that happen to have CF.

Third, go to the CF Roundtable publication. Information is in this publication that may be of help. This is an adult publication for CF's, based out of Gresham, Oregon. Medical coverage, fund raising, etc. are discussed with those that have found ways to help with expenses.

Fourth, call Beth Sufian, Esq. in Texas. She is a CF and an attorney that works for disability and Medicare coverage and options. She writes an article (Ask the Attorney) in the CF Roundtable. An attorney may have solutions if they work in the field and understand CF.

We are talking about trying to stay alive when time is of the essance and funds are limited.

 

[anonymous]

Fifth, he is 32 years old. Does he have a girlfriend and have they considered getting married. If she has medical coverage through an employer, it could be life saving and personally satifying.

 

[anonymous]

Pam, I have some more questions for you, but would feel more comfortable talking to you privately via email, if you are willing to do so.
my email address is division902@hotmail.com.

Julie (wife to mark, 24 w/CF)

 

[supermanfan]

The one thing I know is that many people come to California while waiting for a transplant. California has a probram called GHPP Genetically Handicapped Peoples Program. This program is great with helping with any medical bills. My Kaiser policy didn't cover oxygen, and GHPP did, so I paid nothing for oxygen. Kaiser then paid for the complete transplant.

But my point is... don't rule out moving. You can always move back. I don't know where you live, but if moving will save your son, it's well worth it.