Wednesday, September 07, 2011

Following Up.

Today was KayTar's follow up with her mitochondrial specialist. It wouldn't be a visit to that particular clinic without a little insurance drama, so at check in they told me AGAIN that they don't take our insurance and I explained AGAIN that the doctor is in network for our insurance and we have seen her successfully before and our insurance has paid for it. She called billing and said that we would have to pay for the visit out of pocket and then file for is never awesome to hear you are going to have to pay 300-400 dollars our of pocket as a surprise, but we didn't want to back out of the visit at that point, so I agreed. I have no doubt my insurance will pay as I've called them about 15 times about this situation and they always, always insist the doctor is IN NETWORK and needs no further authorization. It is a very frustrating situation, but hey...a few years ago we didn't even have insurance to get frustrated about, so I know it could be much worse than this. And the truth is that insurance is more than willing to pay, the clinic just doesn't seem to want to do the legwork.

On to the actual follow-up part of the appointment...R came with us again, in case KayTar needed a little attention while I was talking to the doctor, but it was unnecessary (but fun to have her company, as always) as KayTar was completely entertained with the two brain models that were in our room, along with a clear plexiglass head to put them in. She pretended to do brain transplants for most of the visit. At one point she changed from a brain surgeon into a zombie and cut the brain into "brain pie" and served it up to us from the head/bowl. So many fun things to do with brains! She really, really wants her own model brains (and tuning fork) now. As for the medical part of the visit, KayTar's labs came back within normal limits and her MRI was read as normal, too. I'm somewhat confused about the MRI as she has had 2 previous MRIs that were abnormal. I'm not complaining about a normal brain, but I'm not really sure how it went from abnormal to normal. She hadn't looked over her previous films (she didn't realize she had them), so she couldn't really explain it to me. She did say that certain metabolic diseases can present with brain abnormalities that later normalize. Also, two vials of KayTar's blood from last time was lost, so we had to re-draw labs for the acyl-carnitine panel and glycosylated tranferrin panels. KayTar was not a fan of the lab work, BUT the tech got it in one stick, so I was pretty pleased. The doctor said she is not going to diagnose her with mitochondrial disease because in looking through KayTar's medical files, she thinks that KayTar may have a treatable metabolic disease and she isn't ready to stop looking at this point. After mitochondrial disease is diagnosed, the search is off and we're not there yet. I nodded my head and said, "Yeah, okay." and she said, "Wow, you took that better than I thought." I guess some people come in there really looking for a diagnosis and take it hard when it isn't there right away....or maybe she is secretly reading my blog (yeah, right) and knows how much I want an answer for all of this. Yes, I'm looking for a diagnosis, I practically dream about it...BUT I want the right diagnosis when all is said and done. We started seeing this doctor because we were told she is the kind of doctor who cares about finding the right answer, whether it is mito or something else, and thinks a diagnosis is important. In our experience, many doctors don't feel this way, so I'm glad that she is committed to helping us figure it out, regardless of what the ultimate outcome is. She is referring us to a metabolic geneticist that she works with regularly and after we see her, the two of them will formulate a plan will likely include another fasting study which is my absolute least favorite test of all time. I wonder if *I* can be sedated for this one. ;)

After the appointment, M (who is my savior in this clinic, she has been so patient and helpful through all of this which allowed me to keep my sanity!) came in and said we didn't have to pay up front, because she told billing they had to bill my insurance, because we already have proof they will pay. She told them that they either need to get their doctors pulled out of our plan so we can apply for out-of-network care or just agree to bill the insurance. Yay! But then I came home to a message about KayTar's pulmonology visit next week at the same facility...they said if we don't self-pay up front for the visit, they won't see us. The same goes for further appointments with the doctor we saw today. Since the metabolic geneticist we are being referred to also works out of this office, I'm sure the same goes for her. AGH! It took over an hour to get KayTar's pulmonology visit scheduled because the schedulers were insistent that they do not take our I know the same will happen when I call to get her in with the geneticist. All of these doctors are in our provider directory, but that office just doesn't want to deal with our insurance because the clinic is not contracted with our plan. So now we are looking at possibly switching plans to see if we can get both our hospitals and all of KayTar's medical team covered, which span the two different hospitals and affiliations with two different medical schools...but I'm a little scared to switch based on a provider directory, as I've learned just how WRONG they can be! All of KayTar's doctors are listed in our current directory, but we are still having major issues with it. It doesn't really seem right that if insurance is willing to pay, the clinic can still keep us from being seen, but it seems there is little that I can do about it. I guess I should look at it as a learning experience, because by the time I am on the provider side of the medical billing process, I'm going to know more than I ever wanted to know about things like this!


leah said...

I really love honest doctors who push for an accurate diagnosis (even for those of us who really, really want a "comprehensive" diagnosis). Nolan fits one syndrome almost perfectly (from facial features to symptoms) except for one cardinal (and necessary) feature - I have to talk to his ophthalmologist tomorrow to verify that he doesn't have vitreous changes in his eyes... it would be SO nice to have an answer, but we'd really rather it be the RIGHT one!

Wishing you luck with the metabolic geneticist!

Anonymous said...

Can you call the insurance commpany and have them call the office manager (with you on the line) and explain to them this is an in-network visit and will be covered and they need to stop harrassing you? Or talk to the office manager or the doctor? I had this happen to me and the insurance company called the office manager and explained the situation, sent them a copy of my benefits and I never had another problem. I was on the phone the entire time! Just something to think about?

Glad to hear this MD is going to keep looking. Why settle on a diagnosis just to have one? Unless it's the right one and it doesn't sound like mitro is; and that's good.

Any talk about the negative GES results?

How are classes going? When do you get too start applying to medical schools?


~aj~ said...

What a nightmare all that insurance mess is. Surely they will get it all figured out sooner or later...just wish it didn't have to be a headache for you in the meantime.

Hoping that 2nd fast can maybe somehow be avoided. I know that was so, so hard. But hooray for going to a doctor that is committed to truly trying to understand KayTar's body and all that is going on. Such a blessing!

I love that she was entertained playing with a brain (especially the zombie part). I used to have a couple of sheep brains in my apt in college for studying purposes. Good times. :)

Gizabeth Shyder said...

Brains and zombies are a nice distraction from any unpleasant experience.

alejna said...

That business about the billing and insurance makes my head explode! I'm sorry you have to deal with that over and over again. Ugh.

But I am glad that you have such a thorough doctor on the case. She sounds great. I hope that you get to find the right answer.

Also, I just loved reading about KayTar playing with the brains. Thanks for the entertainment!

InTheFastLane said...

I am so glad you have insurance, first of all, even if sometimes (often?) it is a pain to deal with.

And secondly, the search for an hard. I am glad there are people who are willing to keep looking.

Katie said...

Thank heavens the insurance thing worked out!

Love Kaytar's zombie/brain surgeon approach.