I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: cariad on December 22, 2009, 07:22:15 PM
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My transplant coordinator phoned today. He never phones, so this was newsworthy in and of itself. He said that the surgeon is going to be getting in touch with us in early January to set a date. I guess the hold on the clinical trial has, at last, been lifted. We were originally told "about two weeks".... in early October.
We have so much to do, no money to do it with, and our insurance (COBRA) expires soon. I am stressed, but hoping that all will come together in time. My husband has already informed his boss that he had better get health coverage in place pronto. The only reason my husband took this job instead of the job he was offered in the UK is so that we could do this trial, and the owner has known for a year that we require health insurance. (My husband's colleague has already been forced into bankruptcy because his wife is dying of cancer and this company dropped their health coverage. That man is also spiraling into severe alcoholism - it's very sad. :()
I am very ill and told my coordinator today that I need a date, because I am probably going to request dialysis next month, and I need to make crucial decisions on how I will go about getting the treatment. I can hardly walk anymore - I can really feel how much I need to do something soon. The earliest they could do the transplant at this point would be February, so if they give me that date, I may try to hold off on dialysis. It's going to be a nail biter regardless.
Just wanted to share. I am excited behind all the fear and stress.
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Cariad, that is I'm hoping good news that it could happen in February, but for sure good news that some one from Northwestern called you back on their own for once.
As for insurance that is always a concern even with Medicare and other types of insurance. I have no input yet about that.
You never know, things may work out in the nick of time.
Good Luck
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Oh, Cariad,
I am so sorry that you are feeling so bum. But this is good news. Get that boss off his a$$. You need that insurance YESTERDAY! :boxing;
I've been thinking of you. Wish I could help.
Aleta
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Thanks so much, you two! We have until end of February on the insurance, but we lied to the boss/owner and told him our COBRA expired end of the year. :shy; Oh yes, we will stop at nothing to get this settled NOW.
for sure good news that some one from Northwestern called you back on their own for once.
It is miraculous, isn't it, Chris....
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Well if the health plan does pass, he will have to get healh insurance for employees if that part hasn't changed.
You might qualify for Medicaid since your husband hasn't been paid yet. I would look into that further too.
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If you become disabled while on COBRA they are required to offer the COBRA extension, at least that's what happened to my husband (his was a permanent back injury.) Also, being diagnosed with ESRD also makes you eligible for Medicare, but check with your Social Security office.
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If you become disabled while on COBRA they are required to offer the COBRA extension, at least that's what happened to my husband (his was a permanent back injury.) Also, being diagnosed with ESRD also makes you eligible for Medicare, but check with your Social Security office.
Thanks for the thought, Karol. Unfortunately, I did not read the fine print sent with the COBRA bill, since we have that on autopay we never look at it. According to the COBRA administrators, I had to ask for the extension within 60 days of receiving the official notification that I was disabled. That was back in March, I believe. At that point, we had a year to get new insurance through Gwyn's work, and for some reason I did not think to request the extension because I assumed I could deal with that if and when we actually needed to extend. It is a huge regret of mine. I am usually poised and ready to pounce on these issues, but I blew the COBRA extension. We could appeal to my husband's former employers for a bit of human decency, but since we are suing them for their appalling lack of humanity, we know where that will lead. How can you not love a system that wants to penalize me and my family with bankruptcy for missing such a common-sense deadline! :sarcasm;
I have a few options if the owner cannot pull himself together: The state of Wisconsin has a chronic disease program (for a random assortment of serious diseases). The huge problem I have with this is that they will ask for the money back eventually - not from me, not from my husband, but from my children. The thought of that fills me with a uniquely intense rage. And I doubt they would cover a supposedly experimental procedure in the state of Illinois. My other option is to go the HIPAA route, but because I qualify for Medicare, there is a six-month pre-existing condition clause. I told them that in the world of renal failure, they may as well make it 100 years. Their response was "I'm so sorry, ma'am."
Finally, my husband is considered self-employed. He has a connection to an insurance guy who could talk us through getting group insurance for my husband's "business" but he would need to employ me (so that his "company" has at least two employees) and there are tax issues everywhere with that. We would also need to be able to afford it (unlikely).
The best and, in my opinion, only option is to get the insurance that this owner has been promising for a year now.
I will try calling my local SS office for advice, but when I called the national number, the guy told me "We don't get involved in that." I never know if the individuals who answer the phone know what they're talking about. My local contact seemed quite competent, so I will see if I can find his number. Thanks for the suggestion! :)
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Cariad, check with your local NKF (National Kidney Foundation) to see if they know of anything that can help. Here in Illinois the NKF puts on a day long seminar regarding transplants (not just kidney) and one of the speakers each year discusses insurance issues and knows some ways to help with Medicaid. Although it maybe limited to Illinois, just never asked. I should still have her business card aroundd if you want to ask her questions.
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Chris, I would absolutely love any leads you could give me. If you do find her number, please send me a PM or email. I will definitely follow up with her. I will also see what I can find for NKF contacts for Wisconsin.
Thank you, thank you for the suggestions!!!
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Any updates on the transplant, Cariad? Now that Christmas is put to rest and we are almost in the New Year, I hope your sights can be set on smooth sailing toward that February event!
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I'll look for that card tomorrow, was a busy day today and fell asleep after pain med. I know where to look, it's in my closet in the bag they gave me for transplant material. If not, I wont see her till April or may when they have the seminar again.
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Thanks for asking, Aleta. I have been waiting anxiously for a call since Monday morning. Yesterday the research coordinator phoned and said that the surgeon and another coordinator will try to call me today, and if they don't manage, to try them tomorrow (Friday). As it is already evening CST, I guess I will be ringing them tomorrow.
I think the title 'coordinator' is meant to be ironic at this hospital....
I did have an appointment with my GP today. He is the nicest doctor. He offered some ideas on how to deal with COBRA expiring, and we talked a great deal about the trial. When he asked if Gwyn was getting nervous, I said honestly that I didn't think so, because neither one of us really believes this is going to happen. Anyway, my GP said he knows this is going to work for me, because there is no doubt the theory is sound, they just have to fine tune the method.
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I'm glad to hear about the COBRA, Cariad. And your GP, too. :2thumbsup;
Since he is sure it is going to work out, I, too feel better. :clap;
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oh my, this disease is a real roller coaster ride?!!!
:stressed;
I hope you can get your medical aid sorted out so that you can just worry about one thing at a time. (I know the feeling)
I still don't get it.? ACCESS TO HEALTHCARE -should be a basic human right.
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I don't get it either, Des. Of course it should be a basic human right, not survival of the richest. Thanks so much for the good wishes. I am sending some right back to you for your situation. :grouphug;
Ironically, when I had my first transplant, my parents were so grateful to the transplant center that my father donated a large sum of money in my name to that hospital for transplant research. Now, 34 years later, I need to avail myself of some of the benefits of transplant research, and I am in real danger of not getting that opportunity for lack of funds.
For all the problems I have with my father - and there are many - he was a business owner in the state of California for most of my life, and he always provided healthcare to employees, even when he was losing money horribly. In fact, I know he voted for the law that forced business owners like himself in CA to provide this insurance. He is not a hypocrite that way. If he knew about our insurance issues, he would vomit.
Still waiting on a call from the surgeon. Apparently, he needs to talk to me himself, so it cannot be passed off to an assistant. I have my cell phone with me, turned up to max ring volume, so we'll see....