I don't know what to do

[Kitty Cat]

A couple months ago, I found out that I may be out of a job in April 2011 after 10 yrs. (company being sold) I won't know until closer to Christmas if the new place will have a spot for me or not. (not looking good)

That being said, it has been so stressful because I am the insurance carrier for my husband. I spoke to the social worker at dialysis last week to give them a heads up that I MAY be losing my job and I want to plan ahead, such as, what can I do to help him because of his constant hospital visits. I thought I was doing something good, but I guess not. I don't know what happened, but somehow a diluted story made it through to transplant and the end result is my husband has been removed from the transplant list. I truly wanted to plan ahead instead of getting hit between the eyes if the time comes. I wanted to know what I could do alternately, how on earth did this get so messed up?

Now I don't know how to fix this and seriously regret saying anything and asking any questions. I told the social worker so many times that nothing is written in stone, but I guess she heard what she wanted.

I'm  panicked now, he's absolutely furious and I've apologized profusely but he also knows that this wasn't the reason I wanted to talk to them. I spoke to him in advance and he agreed.

Does anybody have any ideas to help me try and fix this? I'm at a complete loss.

[lola]

can he get Medicare??? If he's on D then he should get it, also there is help to pay for it.. Some social workers are worthless and Otto has had a few who almost made him miss the chance at Medicare. Also I am SHOCKED they dropped him from the transplant list and I would be talking to someone ASAP as he still has Insurance!!!! Good luck.....xoxoxox oh and one last thing if there not helping you at the center call headquarters, we now have a "buddie" and she makes it very clear to the center they better ALL be doing there job for Otto

[Sax-O-Trix]

If he is on dialysis, sign him up for Medicare and the prescription plan.  It's my understanding that Medicare will pay for a transplant and since he is already on dialysis, it should be relatively easy to get Medcare.  It seems we kidney folks lucked out somehow with Medicare coverage, kidney failure is one of the very few reason you can get Medicare while still under retirement age.  I was just listed with UNOS and also have a potential live donor, and it seems the number one thing everyone is interested in is my insurance coverage...

[MooseMom]

That he has been dropped from the transplant list is appalling.  That really makes me sick to my stomach.  Like the other posters have said, look into what Medicare can do for you.

[Kitty Cat]

Thank you for the help, he has medicare, here when you lose kidney function, it's mandatory but to have a transplant you need to have a second form of insurance to back it up and prove that you can pay for the "after transplant" meds.  The first transplant he had in 2005 we had to prove he had a 2nd insurance and he reminded me that I had to have a letter from my company stating that my insurance would assist in paying for transplant surgery.

My husband is going to call them today to find out what their problem is. If we have to, his 2 doctors will have to get involved as well. I'm absolutely stunned over all of this!

This whole not knowing if I have a job much longer is stressful enough (not to mention disgusting) but to have this thrown on top only because I was trying to get assistance set up in advance makes me want to never reach out for help again.

[Poppylicious]

Gosh Kitty.  That is awful, and wrong on so many levels.  I really hope it gets sorted.

And I also hope that if you do end up being made redundant you find another position really quickly.  To have that hanging over your head on top of everything else is horrid.

Many *huggles* ...

[Sax-O-Trix]

Jeeze...  I learn something new here everyday.  I didn't realize that you have to have secondary insurance if you are on Medicare in order to get a transplant.  That could be a huge problem.  I don't know how they could knock him off the list premptively (is that even a word?) when you may or may not lose your job six months from now.  Most people these days have to worry about whether or not they will have a job/insurance in six months.

[murf]

Being from OZ, I simply just don't understand. Why would they take anyone off the transplant list if you lose your job. Could someone please explain?

[Poppylicious]

Being from OZ, I simply just don't understand. Why would they take anyone off the transplant list if you lose your job. Could someone please explain?

I don't really understand either (being from the UK).  What's even worse is that the job hasn't actually yet been lost. 

[paris]

I don't think any of us understand this.   If that is the case, how does anyone over 65 on social security get a transplant.  A friend got a liver transplant at 65 and then a kidney/pancreas at 67. He was retired with Medicare as his insurance.   There is no second treatment for liver failure; they have to be transplanted.     I think we are all upset about this and I would love to know the answers.     Kitty Cat, I hope a good solution is found quickly.   

[cloud393]

Where do you live?  I live in Ohio , medicare is my only insurance and I'm on the list.  I don't understand.

[okarol]

Does he have Part A, B and D on Medicare?
If you get laid off you should qualify for a COBRA extension, which means you'll be paying for the secondary insurance (ours is pretty expensive) but at least you'll have it til you get a new job. In our case, they had to continue the COBRA because my husband (he was the employee) and my daughter both became disabled while on COBRA. There's also a provision that lowers the COBRA fee - more here http://www.dol.gov/ebsa/faqs/faq-cobra-premiumreductionEE.html

[Kitty Cat]

I"m sorry I've been away for so long. My hubby hasn't been feeling well, so I've been spending all my extra time with him. Looks like another surgery in the near future.

I don't understand either. We were told that we have to prove (with 2nd insurance) that we can afford the after transplant meds and that without me having that insurance he can't have a transplant. They won't call us back, I'm now on vaca for a few days, I'm going to get ahold of them even if it means driving there myself.

I've lost a lot of sleep over this. I don't understand why they would just listen to a social worker who obviously could care less instead of asking if it was true that we didn't have the insurance. I can get a letter from human resources in the blink of an eye stating that I have never lost my insurance. He has the medicare and for one moment I don't believe all the people having transplants in the unit have 2 insurances!

No answer yet about the job, keeping my fingers crossed and hoping for the best. I really don't expect to hear anything until after the new year, then I'll need to get my ducks in a row.

I've crossed the bridge to anger of all this, things are difficult enough without adding something so utterly stupid to the mix. One question would have resolved the issue, but no, let's listen to the social worker, she's the know all of the world.

I'm sorry for venting, I'm a bit on edge, but in the few days I'm home, I WILL have this resolved one way or another.

[del]

You go girl!!   

[Kitty Cat]

Good News!!

He has not been removed from the transplant list, he is inactive because of all the surgeries he has had. They said it does something to the antibodies so he's been pushed off a little. I can deal with this.
It's not as permanent. I wish somebody had said this in the beginning!

Nobody has been able to give me any information about the insurance things. I will get the chance to speak to his surgeon in another week, he was scheduled yesterday for yet another fistula revision.

Thank you all for the help and suggestions, I am still looking into all of it. I want to be prepared for anything.

One step at a time.....

[Jelena]

Kitty Cat, I was in a similar situation just recently, and it helps a lot to talk to a GOOD health insurance agent (sometimes social workers are not very helpful... that is, depending on the worker). As a small organization, at my job we lost eligibility for group health insurance coverage, and had to sign up for individual policies. As I was carrying my husband on my insurance policy, needless to say, I totally freaked out! However, being on BCBS all these years, and at the time when my husband got diagnosed, we were able to get him on Medicare Advantage, which is some combination of BCBS and Medicare. It seems as good as what he had, and much, much cheaper! The agent also told me that EVEN if he were not eligible for that, he probably would have been able to sing up for some state insurance plan that is available here in NC. So, my husband still has second insurance and we are relieved. Hope this helps! And I am so happy he wasn't actually removed from the list. That would have been just ridiculous.

[Kitty Cat]

Jelena,

Thank you. My employer is switching to BCBS in Jan 11, until the business is sold. But I am trying to look into alternates just in case I lose my job.

I absolutely won't discuss anything else with the social worker, I know the dialysis center was trying to help us as well, they are fantastic to work with and maybe got things corrected. In the beginning they acknowledged he was removed, so I'm fairly certain they helped get things straightened out.

Thank you so very much for the help. I'm so worried about the loss of income if it comes to that, I'm keeping my eyes open for a new job, however since I've been here for 10 yrs, it's tough to think of starting all over again.

[Kitty Cat]

Well....on Thursday we were told that our area was being dismantled and our positions were being terminated this coming spring. We aren't the only ones, everybody is in shock not quite sure what to do.

My husband sat down with dialysis yesterday and told them what was coming. They are trying to help us find a way to cover the 20% that medicare won't cover for his treatments. In the meantime, I am watching (as I have been since this started in August) and will aggressively be hunting for a new job after the holidays.

Keep your fingers crossed. This is a whole new area that I've never been in before. Keeping my fingers crossed that he doesn't end up in the hospital once my job ends! Until I have new insurance. Now that I know he isn't active on the transplant list, I know he's not going to be called overnight for a transplant. This gives me a little breathing room.

[looneytunes]

As I sit here reading this I ponder the state of things in this country.  Jobs going away left and right.  It makes me sick to think of all the folks who used to have health insurance that no longer do because their job went away.  Perhaps if we all refuse to buy anything not made in this country, the jobs would come back.  Kitty Cat, I wish you the best in finding a new job and hoping this situation will resolve quickly for you.  I know the stress has to be tough. 

[Kitty Cat]

Thank you looneytunes. I appreciate that.

My concerns and fears aren't about what I'm going to do, it is about what happens if? My husband is constantly in and out of the hospital for emergency things. I don't expect that to change. For instance, this past Tuesday he was supposed to have surgery, things fell apart and he had it a week earlier.

When I get a new job, I can't have FMLA for the first year. What do I do? If he gets rushed to the ER, do I just get up and leave (that is exactly what I would do) and potentially lose my job? It's a risk I'd have to take.

I know when a window closes a door opens, the best I'm hoping for is a new job with people who understand my life and will work with me.

[okarol]

I don't think any of us understand this.   If that is the case, how does anyone over 65 on social security get a transplant.  A friend got a liver transplant at 65 and then a kidney/pancreas at 67. He was retired with Medicare as his insurance.   There is no second treatment for liver failure; they have to be transplanted.     I think we are all upset about this and I would love to know the answers.     Kitty Cat, I hope a good solution is found quickly.   

If you are over 64 the Medicare is permanent, so there's not the problem of running out of coverage when the 3 year limit on immunosuppression meds run out.

I remember that Staffenberg suggested that we move Jenna to France so she would not have to worry about the payments long term for health care. I thought he was kidding, but he was serious. I see why.

[okarol]

We have been on a COBRA extension for 12 years since my husband became disabled. Did you ask about it?

If you no longer have insurance (and your income drops) you may be eligible for Medicaid in your state. Medicaid is health insurance that helps many people who can't afford medical care pay for some or all of their medical bills. http://www.cms.gov/MedicaidEligibility/

If your husband had transfusions during his surgeries then that could possibly be the reason for his being on inactive. They'd need a new blood sample over a couple months.
 

[boswife]

WoW Okarol, besides the great info on the medical stuff, you could very well be right on the possibility of needing blood samples to be updated.  Sometimes "timing" throws us into one track thinking, but that would certainly be something to check out.

[rsudock]

Kitty so sorry to hear about all your worries and stress right now!! That social worker needs an a** kicking...glad he is only inactive on the list. That happen to me as well I was on the list but inactive as I had to have spleen removed. So his wait time is being counted just no kidneys will be offered.

Since you will be losing your job will they be offering you COBRA? The national kidney foundation will help you pay for your cobra premiums so you can keep your private insurance...of course your social worker should have known about this but she/he doesn't seem very with it.

Hope the hubs is feeling better soon!

xo,
R

[Kitty Cat]

Thank you all so very much!! You truly don't know how much I appreciate the help. Still a bit in shock over everything that has happened as you can probably guess.

okarol, my husband is 51 and you are correct. He has had numerous problems and transfusions were involved. Plus I think because he had cancer when the kidneys were removed over a year ago that may have done something also. I am going to look in to the medicaid as well as having hubby ask the head dialysis nurse about COBRA tomorrow (the financial assistance) thank you so much also rsudock. I don't know what will be happening, I've been told we will continue our every other week meetings, so I will be able to ask about this when they come back next week.

You've all made this so much easier for me to accept and work through, never having experienced this before, I have no idea what I should be asking or how, but you are all once again here for me. I know not to talk to the social worker ever again, however, the woman in charge of the dialysis center has stepped forward and is trying to help us.

I think it would have been easier if I didn't like my job, but it's the first one I have ever had where I feel like I make a difference and I LOVE helping people. Not ready to leave but I'm sure there's an opportunity for me that I can't imagine yet. Even my boss told me if I can find something where I can help people, I could excel. Getting references from the top people won't be any kind of issue. It's starting over.

I thank every single one of you from the bottom of my heart, if you can think of anything I'm missing, please let me know. I appreciate how you are all here to help every single time whether I finally explode over family situations, panic over surgeries or even lurk and read. This truly is my second family. I thank you humbly from the bottom of my heart....