New To This Site

[susanfriedman52]

  Hi Everyone!  I am new to this site and wanted to introduce myself, and let you know, I have a 19 yr. old daughter (Jillian) that had a kidney transplant in January 2009.  This has been a real journey for our family (we didn't know Jillian was dying from kidney failure, until it was almost too late). After the kidney transplant, Jillian was diagnosed with a very rare disorder called Joubert-Nephronophthisis (the doctors removed one of her "bad" kidneys to make the diagnosis). This disorder is a neurological one that can affect different organs in the body. Jilllian got the kidney-eye version of this, but she doesn't meet full criteria for one version of the disorder (she had genetic testing for one gene).  She still has it, but the genetics people are trying to find out, which genes are involved in our daughter's case.  The scientists have isolated 10 genes for this disorder, and still really don't know enough about it.  This disease is autosomal ressessive, which means my husband and I gave it to Jillian, as we are both carriers. Only 1 in 500,000 people have this, and so, we have NO SUPPORT where we live (S.W. Florida area).  We would love to be able to hook up with other families in our area, to find some sort of support, but it just isn't possible.  Jillian also has Autism, which makes this even more difficult to deal with. Since the transplant, Jillian has been on Medicare, to pay for her drugs. We just found out that, Medicare is coming to an end in January 2012. After a kidney transplant (for those of you who don't know), you are entitled to 3 years of Medicare if you have a diagnosis of End Stage Renal Failure.  Because Jillian is only 19 yrs. old, she is not "entitled" to more than 3 yrs. of Medicare coverage (because she is under the age of 65).  We have no idea how we are going to pay for any of her anti-rejection meds, once the Medicare ends.  Apparently, our Government has voted down a bill, that was presented as far back as 2007, for Medicare coverage for anyone that has a kidney transplant. Only those 65 and over, who have had a transplant, are entitled to Medicare permanently.  They are the ONLY ones, that the Goverment will pay medication coverages for. This is so unfair and it's become a terrible problem in this country. If anyone else has experienced this, please write back and let us know what you did, it would be appreciated.  For more information please contact the following website: http://capwiz.com/kidney/utr/2/?a=15157126&i1234&c=  Leave a message for your local legislators regarding this Medicare issue, it's important.  Thank You!

EDITED:  Fixed Smiley - Rerun, Moderator

[Meinuk]

Hi Susan!

Welcome to IHD.  I am so sorry that you have had such a rough time of it with your daughter's kidneys - IHD is a great place for support.

I have to advise you to look at that Lobbying with the NKF carefully.  They are lobbying for immunosuppresive medication, (good for us and the drug companies) but how will your daughter pay for Dr.'s visits, and lab tests, ultrasounds, biopsies and other medication (blood pressure or anything else that is NOT immunosuppresive - Valcyte? (that is $70.00 per pill))

I am sorry to be such a downer, but we need TOTAL health reform that includeds Universal Coverage.  This Immunosuppresive Bill will still leave you bankrupt.  (but your Prograf and Cell Cept will be paid for)

[okarol]

 
Welcome and best wishes to you and your daughter. We have had similar issues and you may find helpful info in this thread http://ihatedialysis.com/forum/index.php?topic=4555.0 How to pay for life-long immunosuppressants.
Finding support groups was always a challenge when our teenage daughter was diagnosed with CKD. That's what led me to seek out help on the internet and I am so grateful for this forum, it has taught me a lot.
I hope you share and read and I know you'll find good support here!

okarol/admin

[monrein]

  to IHD.  I'm very sorry that you're dealing with these financial issues on top of the medical ones that are already so draining.  This is a great place for info and support.

[willowtreewren]

 

I wish things were easier for you, Susan. But this is a great place for emotional support and information!

Aleta

[Rerun]

Hi Susan, and welcome to IHD.  I'm so glad you found us.   

I just want to remind everyone that dialysis is also paid for by Medicare for all of us under 65.  AND 3 years worth of medication for transplants.  ALSO, that other transplant kids, like liver and heart, don't get help by Medicare.  Be THANKFUL !  Give a mouse a cookie....

Yes, we need COST reform so all these things don't bankrupt us.  AND maybe Social Medicine so that all transplants are helped.  But, until then, we are taking away from our elderly.

Sorry...........  Just had to say that.  That is what this site is all about.  Say what you have to say.

You will learn lots on this site and get lots of support.  (maybe not from me)   

Rerun, Moderator           

[Meinuk]

 

I for one can attest that Rerun gives a lot of support!!!

[galvo]

G'day, Susan, and .

[MooseMom]

Hi Susan.  Am I right in assuming that you have no other insurance, ie private insurance via an employer, that could provide coverage for your daughter?

Does Florida have any sort of state insurance program for kids?  Have you contacted your representative from your district in Florida to see if there is any financial assistance available?

What an awful problem.  This sort of thing makes me ashamed of our country.

My son is autistic, so I know what an added burden that is.

I think you will find a lot of support here at I hate Dialysis.  We all have kidney problems in common, caused by all sorts of diseases and maladies.  Is your daughter physically better with the transplant?  Is she doing well?  Is the new kidney functioning well?