red tape

[vivisfab]

So I started pd in late October...I have been trying to get on the transplant list with no success. I have been discouraged, have a social worker at the clinic that does nothing but give me numbers for me to call. I got turned down the first time b/c they said i needed part d. I get part d and then they said they turned me down b/c my supplementary insurance was paid for by the nkf. I told them once my transplant went through, my family would cover that insurance. The lady from lifelink at the hospital told me that if my boyfriend had health insurance, my best bet would be to marry him. Very compassionate and professional, right? When I complained, I was told that I would be contacted by a supervisor. That was last week! i feel like my future and life are in these people's hands. Has anyone else encountered these problems or am I the only lucky one?

[alohacandy]

Aloha Red Tape,
I just read your post and was wondering how things have been going for you.  Have you looked into getting listed at any other transplant hospitals than the one you contacted?  I know that some people have told me that the transplant hospitals want to know upfront what their plans are for financing their insurance and medications post transplant.  This is a legitimate concern because they want to make sure that you are prepared to get the medications that are needed to take care of the kidney and that you will have ongoing insurance coverage once Medicare stops.  Unfortunately, some staff members are not as tactful as others when they working with patients...or as we say here in Hawaii....they have no aloha. 
Keep us posted as to how things are going!

[FineWhine]

Yeah, red tape doesn't get easier does it. I am so frustrated with my transplant hosp that I am looking elsewhere. When my husband lost his job and we were paying for COBRA which took most of the unemployment checks every month, it was scary. Called the financial office to ask for help; they said they could do a payment plan. So we did. But the didn't tell us we had to do a new plan for each bill! Plus, they would get paid by insurance, send us the remainder and before we even got the mail, we'd get a computerized dunning call! They said if I wanted help, I'd have to move to Mass, since NH doesn't have any help. Not gonna happen.

My local neph asked me to use the hospital nearer and they really were better than Boston for the AV Fistula. Almost like a spa treatment, really. But still have to find a transplant hosp. How are you doing?

[RightSide]

The lady from lifelink at the hospital told me that if my boyfriend had health insurance, my best bet would be to marry him. Very compassionate and professional, right? When I complained, I was told that I would be contacted by a supervisor. That was last week! i feel like my future and life are in these people's hands. Has anyone else encountered these problems or am I the only lucky one?

You're definitely not the only one who's had THAT problem!   

http://www.youtube.com/watch?v=XCw_UoRhTUk

[alohacandy]

Interesting YouTube!    Funny thing is...back in the late 70s, I remember a lot of my ex hubby's Navy pilot friends would marry so that they could get the off base housing allowance and their "wife" would get the medical benefits.  The wives were usually young college girls.  I think the govt. put a stop to the sham marriages finally because there were so many of them. 

I'm a social worker at 3 FMC clinics and have also worked through the years in acute care, rehab and home health.  I get frustrated hearing my patients' stories and advocate as much as I can for them as well as suggest multiple listings.  We just have one transplant hospital in Hawaii and the waiting lists are long here so it is beneficial for people to get on more than one list if they can. 

[texasstyle]

awww... I'm sorry you're going through this. I hope things can get straightened out soon

[Jie]

It is not a bad suggestion for marrying the boyfriend. Even better the soon-to-be HB can donate a kidney...

[bette1]

The transplant units don't really come out and say this directly, but they want to make sure that you have the ability to pay for your transplant long term before they put you on this list.  I have a guy who is in his 40"s at my old unit who is in really good shape, but can't get listed for a transplant because he isn't a citizen, and cannot get medicare.  I feel bad that he has no choice because he doesn't have money.

If you get a transplant you will have to have good insurance for the rest of your life to pay for the anti-rejection drugs and medical care.  I have had kidney failure since I was 19, and my husband and I have had to make so many life and career decisions based on insurance.  Right now he is working in a job outside of his field because the company has really good insurance.

I'm really hoping that Obama's health care reform will really help.  People really don't realize how expensive it is to be sick.

Sorry for going off on a tangent

[pdpatty]

That is what they told me,I had to show I could afford the meds.

Yet,there is a man at the center who is looking at his second transplant and he told my husband that Medicare paid for his meds the first time. I don't believe that.He probably meant to say Medicade.

Those on Medicade in our area seem to be making out like bandits. At the center ,there is a woman on dialysis,her husband and adult(age 40) son ,all on Medicade. They even paid for the old man's dentures. I am on Medicare and don't get any help with dental,eyeglasses or special shoes for my very deformed feet. All comes out of pocket. I have to pay for supplimental insurance and partD  and still get some needed meds denied.

No use for me to even wishing for a transplant anymore because they removed a pre melanomia spot off my back and froze a precancerous spot off my ear.

[vivisfab]

Hey guys, thanks for your support. As of now, almost 3 mos. after writing this post, I had an orientation with the people at lifelink. After much paperwork and family support, I am entering the testing phase. I also am getting tested with Shands in Gainesville. Very overwhelmed and excited but that is a different post...RightSide, how did you ever find that video? I haven't laughed like that in ages!!! I'm putting that on my facebook page.