Financial Issues with ESLD/Transplant list??

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Apr 2009
Total Posts : 8
   Posted 4/21/2009 1:39 PM (GMT -7)   
I come here often and read, but never post. My husband is 56 yr old ESLD, he is being evaluated for Transplant, and should be listed soon. He has health insurance at his job, although he is currently on Short Term Disability. We have applied for SS Disability per his doctors advice. I work and have my own health insurance--my premiums for adding a spouse are not affordable. We are just starting to have financial issues come up with the co pay's and his 20% etc etc--He is in and out of hospital now for paracentesis, peritonitis, encephalopathy, renal failure etc--My question is how do you manage all of this, if you are the "working poor"--basically you work so you don't qualify for programs and you don't make enough money to pay never ending medical bills. I am 11 years younger then my husband and have to support myself no matter what happens to my husband, I have to keep myself insured and healthy so I can take care of my husband, and I have to keep my job to pay our bills. I am sure this isn't anything that anybody else here doesn't have to deal with--but I am at the end of my rope--my friends I work with are asking me if I have seen a lawyer about a divorce to try and help my husband get more help and to keep me from being responsible for monumental medical bills?? I can't imagine doing that. Any advice here? We have met with the Financial Coordinator at the Transplant Unit--we are doing everything that she suggested and still have these worries.
Thank you

Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 4/21/2009 4:38 PM (GMT -7)   

Jenny, welcome to the forum!  I am glad that you decided to post.  My suggestion would be to see if the transplant center your husband is going to has a charity program to help cover expenses.  Is he currently covered by insurance?  If so, they may have a program that will cover anything insurance doesn't pay.  That is my situation at Mayo.  Otherwise, you can work out a payment plan.

If your husband is able to be approved for SSD, he will have to wait 2 yrs. to be covered by Medicare.  Right now, with your income included, he probably doesn't qualify for SSI...but when he applies for SSD he will automatically be evaluated for SSI, as that is a more immediate type of assistance.   People are suggesting divorce due to your income probably making him ineligible for some things.  However, in most evaluations it is the number of people in the household and the total income that is considered.  In other words, it would probably do no good to divorce if you still live together.

I will leave it to others who have gone down the transplant road to offer suggestions and share their experiences.  You may even need to have a fundraiser or two for him.

You will find a lot of support here, so come back often!

Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Regular Member

Date Joined May 2008
Total Posts : 61
   Posted 4/21/2009 7:00 PM (GMT -7)   
Hello Jenny! I can't give you answers probably, but I sure can sympathize. My friend, Mary, had been working sporadically the last 10 years and had actually stopped working about 5 years ago. So she had no health insurance and didn't own anything to speak of. This made her eligible for quite a bit of assistance. She got SSD pretty quick now that she's in ESLD. She applied about 10 years ago and was turned down. At that time she found out she had Hep C and it explained her fatigue issues, etc.

Anyway, since last July, she was given several appointments and many months passed but still she was not getting listed and it seemed she was getting the run around. Long story short, I went to the last visit with her and had my facts and figures. What usually was a total 20 minute visit of social workers, case managers, the hepatologist, etc. turned into over an hour of getting some answers and finally she was listed March 27. The reason I am telling you this is that if you have NO insurance and little or no income you may be told that medicaid will cover a transplant. However, deep in my gut I feel that if she'd had insurance, she would not have been as easily shoved aside every 3 or 4 months that they scheduled her to be seen and then reviewed for listing. I believe that with much of the current economic picture in mind that maybe medicaid wasn't able to guarantee payment for her transplant. She was not a squeaky wheel. It's still a long shot for her, but she IS on the list for now.

I don't know what you should do, but looking for answers is an important step. I hope others can give you more insight. Hang in there. We are all traveling this crooked path in our own ways. If you've been reading the forum, you already know there's a lot of help and support here.

Best friend is in ESLD, has HepC and cirrhosis. 

Veteran Member

Date Joined Aug 2008
Total Posts : 613
   Posted 4/21/2009 8:20 PM (GMT -7)   


Welcome to the forum! My husband has HepC/cirrhosis and also the good gene/bad gene for alpha 1 anti-trypson deficiency. I tell you this to let you know that we are going down that road. My husband is on the list, but I can tell you it's a rough road wading through all the medical, etc....

Here's what I can share with you. Most of the time, if you have health insurance, the transplant center will file with the insurance you currently have. The financial department at the transplant center can help you and will direct you with getting fund raisers set up, etc to help offset some of the medical bills themselves. With regard to the medications he will need after the transplant, there are patient assistance programs out there that will help you get the medications. These patient assistance programs are through the pharmaceutical companies themselves. Another thought, is if the transplant center gets him in some clinical trial medications (which are done for rejection meds), they can help you there, too.

With regard to social security....absolutely have him apply for SSD. He may get denied the first time (which is the typical thing they do), but appeal every time!! If you have a social worker at the hospital/ transplant center you are working with, they can actually help you get all of it filed and get through the red tape. Once he is approved for SSD, in some states it automatically will qualify him for Medicaid and in some cases medicare. What I am not sure of is if he already has health insurance, whetherr it will just offset, or what. But, if he is deemed disabled, he probably will not be able to work anyway, so he would qualify for full benefits.

We had a social worker get our filing done, and it really seemed to go so much smoother than when we applied the first time, and he got approved. Once wee got approved, wee did qualify for a VERY small amount of SSI due to the fact that my income was so low. His medicaid benefits pay 100% for everrything (which is a HUGE blessing).

Now, my brother in law also had a liver transplant 18 years ago (and still doing fantastic) and from what I understand, he had alot of fundraisers and had medicaid as well to offset costs.

I Hope I have not confused you any more, just wanted to give a little insight and hopefully some pointers. I would definitely speak with a social worker, because that will be your biggest ally through all this......
You hang in there!

Regular Member

Date Joined May 2008
Total Posts : 61
   Posted 4/22/2009 8:30 PM (GMT -7)   

Thanks for sharing that info! It helped me understand a little better how some of this works.

Best friend is in ESLD, has HepC and cirrhosis. 

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 18, 2017 1:40 PM (GMT -7)
There are a total of 2,906,812 posts in 319,001 threads.
View Active Threads

Who's Online
This forum has 158342 registered members. Please welcome our newest member, Typingservice2017.
385 Guest(s), 8 Registered Member(s) are currently online.  Details
NicHostetler, Lapis_29, Kent M., Smara, NKinney, gabybee, CatLady18, dbell