Aches & Pains Not From LAM/TSC

When this posts it will mark the anniversary of a scary moment where I thought my  transplant listing would be completely derailed.

On the 8th, a year ago, I was in a very serious car accident that could have ended my life.  I remember that time because I fought so hard to recover & it was excruciatingly difficult.  I was hit head on by a reckless driver as I was going to exercise.

In one hospital for 4 days, only to turn around a few hours later and have to check in at another for a week, then a week in a nursing home. (Those prior links highlight some past related blog posts about my experiences.)

It took a week to cough up the airbag dust I had inhaled & about a month for my rib to feel like it was healing.

I did my best to avoid it, but there just was no avoiding it.

I didn’t lose consciousness during which I don’t know if that was good or bad, but luckily, did not have too many traumatic night terrors or flashbacks from it.  I do sometimes get a little nervous when cars turn or appear to come from similar angles or a high rate of speed. I guess that’s natural & probably expected given the circumstances.

This year is different because I’m listed & today after some nervous moments I made an appointment to have a consult for dual listing with Johns Hopkins. (Again I’m drafting this post early to post later just for time-saving & energy conservation purposes.)

It will happen in November, while that doesn’t seem that far away (about a month until the appointment), it does seem uncanny that it is relatively soon.

Last year, I decided not to list until after the holidays because I needed a mental break and we all wanted to be sure I was healed over enough.

Then the January snowstorm hit which pushed me back a month, which brought me to March of this year when I finally did list.  But believe me, it feels much longer.

I had a momentary blood pressure increase last week because I received a call from the coordinator at Johns Hopkins saying my insurance would only approve a consult & nothing else. That essentially I couldn’t dual list.

I was LIVID to say the least.

I tried to prepare for battle intelligently & rationally even though I was seeing red.  I figured that there might be some misunderstanding but knew Johns Hopkins wouldn’t tell me that unless SOMEONE at my insurance company had said that to them, incorrect or not.

I also from my job at my employer had seen this scenario play out both ways so I wasn’t entirely sure WHO to believe at first.

Yet, I knew the first thing I had to do was gather my thoughts & call my case manager to have her review the call notes as to who said what to who.

Luckily, as usual she had anticipated me calling & verified that Hopkins had been given incorrect information & that she had already addressed it, verified the actual benefit & then relayed that back.

She verified it with the transplant claims& benefits unit which processes the claims before relaying the corrections back to avoid further miscommunication & gave me the number in case along with the correct information.  She said I was not being blocked. It was just the insurance would need a letter of medical necessity for documentation purposes (which is standard) just to be sure they’d know why any additional tests might be run if they were needed after the consult before they could approve anything additional & that it wouldn’t be denied. They just needed it for documentation to process the claims.

She was very reassuring & understood quite well WHY I was so upset.

We had a really good conversation & I know her well enough with some past situations where she verified a few things & told me they weren’t approved after I had been told initially they were. She didn’t try to hide that fact, I had been given bad or incorrect information the first time, just verified that the other information I had received was incorrect & she had re-verified the correct information before relaying it to me.  She was just straight about it. It’s frustrating to have something not be covered but better to know that upfront before deciding on a service rather than being surprised with it later being denied but not knowing why.

She has a family member with lung disease it turns out, so she understands how upsetting these situations are.   I appreciated her candor.

I explained to her what had happened with the University of Maryland & like when I complained about my former oxygen supplier cutting me off, she told me she really did appreciate me telling her when things go wrong because then if they get similar complaints about providers they have calls & other people to corroborate those complaints.

I also know sometimes too that provider relations do track these things too just in case to be sure there’s no breach of contractual agreements or obligations within the network.  That’s insurance speak for making sure that they are meeting a minimum standard of service (not getting too many severe or continued complaints or offices not providing or refusing services without a reason).

I do know in certain situations when I reported problems with the way some of my callers were treated by their offices (when I was working in health insurance) if it was an egregious compliant or we kept getting repeated complaints, the provider relations department did make calls to offices about them firmly asking them to stop the inappropriate behavior because it was considered a breach of their contract.

Still,  in the end I am glad I don’t have to fight.

I know I would have on principle if it would have been necessary and come down to it. But so relieved I don’t have to.

I talk about these things in my blog because it’s important if something doesn’t sound right to make a phone call to your insurance & verify not just with an agent but also with a supervisor or an assigned case manager (if you have one) if something doesn’t sound right to your ears.

I know not all illnesses get case management & not all case managers are effective, but every so often you do get one that really does empathize & does what they can to straighten out an issue & make life with insurance a bit easier, especially in situations like this.

Had I been told my dual listing wasn’t covered, my next step would have been to find out how to appeal & then go to my doctor & social worker to help me put together my appeal.

My doctor at my center is supportive of me dual listing now that’s it’s taking longer than the window they gave me to get transplanted.

If your center or your insurance isn’t being straight about dual listing,  don’t give up on it.  Just find a way to get a second opinion or get through the right person that help.

If it comes down to it  & it’s an insurance related issue, sometimes the media, as well as state & US representatives, insurance boards & commissions can also put a bit of pressure on to get your appeal a little extra “teeth.” This is one such instance where you should pull out the stops but only after you verify what benefits you do or don’t have & what you need.

If the center is fighting you, try to seek out someone else you know in a similar position who likes their center & the care they are receiving.   I know not everyone has an easy means of this or a support network, but if you do,  squawk to someone.

It might help you strategize in finding a good fit for a dual listing.

I’m talking about this because I know it was extremely frustrating for me & I know my rights from working inside the system, but what about those who don’t?

They need help & a starting point of where to begin, too.

I can’t say what the final outcome will be if someone does have to appeal, but this is one battle someone should pick to take to the wall.

Dual listing isn’t a luxury with the wait times & the transplant list, sometimes it becomes a necessity because it brings about more options.

More options are always a good thing.

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One thought on “Aches & Pains Not From LAM/TSC

  1. Nikki, this is one of your best in terms of straightforward advice pertaining to insurance company denials. I hope more of your blog followers will pass it along (and possibly re-blog). KW4U!

    Liked by 1 person

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