advice needed

amber682

New member
    This takes some explanation, so here goes.
I recently moved from RI to CT, so my son's state med coverage
changed. The cf clinic told me they were still going to see vincent
instead of changing clinics. When choosing the health plan (I had
four choices), I chose according to who would let me go out of
state (back to RI) for clinic visits. The clinic said they would
accept payment from this plan. Two months into it, I get a letter
from the state saying I need prior authorization to go out of state
for healthcare, or they will not pay. The clinic fills out the
necessary forms, but is denied (I get the letter this past
tuesday). I ask if I should appeal or just switch to the CT clinic,
and am told by the clinic to appeal. They want to continue with
Vinny's care, and I would like to stay there. Also, the RI clinic
is 30 min. away, the CT one is 1 hr and 10 min. away. It's actually
closer to go to RI, since I live right on the border.<br>
    Anyway, now that you're caught up, we go to
clinic today because in the middle of all this Vin has a
pretty bad cough/wheeze that won't clear up after a month on
meds, but he isn't culturing anything. The doc thinks this
cough/wheeze may be asthma. He gave me an inhaler for Vin, and
if he's not doing better by Monday, its probably not asthma and we
will be admitted to the hospital that our doc has privileges at, in
RI. He also says Vin may need a bronchoscopy while there. On top of
that, he says he can not give me the letter stating that it is
'medically necessary' to continue Vin's care (that's what I would
need for an appeal), so I will probably have to switch
clinics.<br>
    All this is enough to make me cry at the
visit because I don't know whats up with my baby and he has enough
problems with having cf and I don't want him to have asthma on
top of it, and I am scared to go the hospital again after seeing
how much weight he lost at last years hospitalization with RSV,
plus he caught staph and rotavirus while there, and I don't
want to leave our clinic. And these last two clinic visits that we
had because he's sick may not even be covered by insurance
because its out of state, and I don't know if they'll pay for a two
week hospital stay either. But the doc told me not to switch while
we're in the middle of trying to figure out whats wrong and treat
it. This could end up costing me so much money that I definately
don't have because the insurance people keep telling me I
don't have prior authorization to go, but the doc has me come in
twice for sick visits, and now maybe the hospital too. I can't wait
for the bills to start rolling in.<br>
    <i>I'm sorry I'm rambling on and on but I
needed to vent.</i> I'm anxious about Vin and now worried about
when these bills start coming in, the insurance is going to deny it
and the dr told me I needed to come in and he may tell me I need to
go to the hospital so what choice did I have, he needed to be
seen.<br>
    Besides all of this, we got a flat tire on
the way to the clinic and were an hour late. What a day! I hope I
didn't bore you all, I'm just super worried. Vin hasn't had a
hospitalization yet, just when he had RSV and was dx with cf.
<i>What should I expect at the hospital? And anyone have any
advice on dealing with state med insurance?</i>
    
 

icefisherman

New member
First off feel free to vent, this site is great for that, and lots of us can relate.

Second, insurance and state coverage is a pain in the butt. If your clinic has a social worker, i would let them know what's going on and see if they can help you. otherwise the state will just take advantage of you. Also maybe it would be possible to have your tests and lab work done in CT and just us the RI site for your regular cf visits. Most places will do the fees off from a sliding scale, and might help you that way. I know the frustractions of all of this. It's really not fair that we have to break the bank to stay healthy.
I probably didn't help any, but i know how you feel.
Stay well, and I hope they get your sons problems straitened out.
Ben
 

amber682

New member
Thank you! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I actually spoke with the social worker today and she
said she couldn't help much because shes new and I should just tell
them its closer to go to RI. They don't care if its closer, they
want "medically necessary". She was nice and said
she was sorry she couldn't help but i thought she was useless. I'll
talk to her again when I get a bill.  I could just switch
clinics, but the dr said not in the middle of trying to figure out
whats causing all of this coughing and wheezing. I'll just have to
deal with that now, and the bills later I guess. I need to stop
thinking about it for now and get some sleep, maybe feel better in
the a.m.<img src="i/expressions/moon.gif" border="0"> 
 

coltsfan715

New member
I would call the docs office and talk to someone because at the moment it IS medically necesary for you to continue your sons care at that office. He is currently sick and you mentioned the doc said himself not to change offices while you are trying to figure out what is wrong. Even if it is only temporary that way you can at least make sure that the current issues you are having will be covered by insurance. If the doc won't do it I say try calling the office in CT and making an appt as soon as possible. I know the doc you see said not too, but if he isn't willing to write the note you need to get coverage, so you can go to the office/center in RI then he has no right to say you have to stay there.

I know that may seem extreme, but you need to go where your son can get care - as well as somewhere that is not going to bankrupt you to get that care. Personally if I were in the situation with my health that is what I would do - even though I would not want to switch offices at all.

Good Luck I hope it works out soon.
Lindsey
 

amber682

New member
Thanks for helping me out. I have to call the doc on monday anyway
to see if he wants to admit vinny to the hospital. Hopefully we can
clear all this up then. Fingers crossed for no hospital!
 

bmombtoo

New member
I can't help cause I'm new is a really lame excuse.......she should
have a supervisor or something. Since she is new she could learn a
lot by working on this. I've been new before too....but I always
look for someone to help me along.<br>
Sorry you are having such a rough time.
 

letefk

New member
I think you are really very wise to be concerned about cost. My doc always says "you can't let cost drive your decisions about medical care," but the fact is that I can't take care of my kids if I don't think about how I can afford to keep them getting the care they need.

First, when you talk to the doctor on Monday, be VERY clear that you simply cannot afford to pay the hospital and clinic care out of pocket. The procedures mentioned and a prolonged stay could cost you 16 to 25,000, depending on what they are talking about (IV antibiotics? What meds? How long? etc). Now, there are often payment options and other things hospitals can do, but the point is insurance should be paying for this, NOT YOU. You are darned right to raise a red flag over this.

My clinic has been great about going to bat for me when it comes to insurance issues, and I am CERTAIN that if I was in this situation and they really did not think that I could qualify for an appeal, they would immediately be on the phone with the other clinic and would work with those doctors to get me care. Or they would find some way to give me a reasonable grounds for getting it covered. But I have also learned that I have to sometimes be far more aggressive and pushy than is my nature to get what I need. If you can't switch now, for medical reasons, then it is medically necessary that you stay with your current clinic.

One thing that I can say, though, is that asthma and CF really often go hand and hand. This is not a new issue, just more information on the course of Vinny's CF. It sounds like they suspect illness induced asthma; my girls have that. Once you know that, you can control it, and reduce the changes of ending back in the hospital. I am a little surprised he gave you an inhaler; our clinic has always preferred nebulizers. They swear they are better at getting the meds in the lungs. Perhaps that is a doctor preference, though.

I really hope Vinny responds to the treatment. Having to worry about the insurance on top of all this is just cruel (but too usual) punishment.
 

jonandlindsay

New member
Amber -

I am so sorry to hear about your frustrations. That whole bit about the social worker being new and not knowing anything is unacceptable. It is her job to help you with things like this. Does your clinic have an Office Administrator or Clinic Supervisor (they call them different things)? This is a person who does a lot of the coordinating and paperwork of the clinic. If your's does, I would contact this person and discuss the situation with them. They may be able to help you get to the bottom of everything, or at least find someone that really can help you. Like others have said, if your doctor is saying not to go to the other clinic before figuring out this issue, then he is really saying it is medically neccessary to treat you there. If he still will not help with insurance, and a hospital stay is required, I would advise talking to your insurance company to find a hospital that will be covered, and if neccessary, go through the clinic in CT and the doctors there.

I totally understand about things just piling up.... all you're trying to do is keep your baby healthy and do the best for him that you can... and deal with doctors, insurance companies and money issues. I often feel like crying about insurance issues, myself..... and then on top of all that you're expected to deal with regular life things like flat tires. Ugh...

As far as a possible hospital stay, I read something on the forum a little while ago that said to take as many of your own things as possible (nebulizer equipment, percussors, and foods you know Vinnie likes), be pushy and make sure the hospital has thoroughly cleaned the room prior to your arrival, and insist that ANYONE that comes into the room washes their hands really really well.

Good luck with everything and please keep us updated. I'll be thinking of you.

~ Lindsay
Mom to Ella 2 yrs., with CF
 

letefk

New member
Lindsey has great advice. I heartily second her suggestions about hospital stays, although our hospital would not let us use our own meds for some things. Our clinic was great about coaching us before our daughter's hospitalization. Definitely be aggressive about handwashing. There will be sanitizer in your room, and we got into the habit of also sanitizing all of our hands after handing any hospital toys, after physical therapy, before and after eating, etc. We were also very cautious about playrooms and other children's activities. She only went to the playroom when it was empty and we aggressively handwashed after. She wore a mask, too. We put one on her stuffed bunny rabbit, and after that, she thought they were the coolest thing and did not mind. (It helps that she is older; 4 and half at the time). We left any space where other children were, especially if we heard coughing or saw quarentine signs on any rooms.

Also, be sure you have the schedule of medications, especially if Vinny is put on IV antibiotics. Remind and even nag if iv bags are not replaced within a reasonable range of time or if respiratory is not there in time to do treatments (if they let you do the treatments yourself, this is not an issue; they let me take over after a few days, when they saw I knew what I was doing).

Hopefully, none of this will be necessary at this point. I know it sounds overwhelming (it did to me), but you will manage. The amazing thing is that everyone on this site does, even when we feel like everything is falling apart. Hang in there!
 

amber682

New member
thank you all so much. It looks like Vinny may be admitted monday,
but u all have put me a little more at ease. Its nice to know you
all understand!
 

amber682

New member
Just wanted to let you all know it's all been figured out. I did
switch clinics and we avoided the hospital stay for now. I actually
just explained it all in the post about toys in the hospital. The
new clinic seems great and I'm glad I won't be stuck with a huge
bill if the docs do decide to put my son in the hospital. For
now me and my hubby are happy with the new clinic and hopeful that
these 4 prescriptions the new clinic gave Vinny will clear up his
cough/wheeze so we won't have to go to the hospital.<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

kayleesgrandma

New member
I 'm glad things turned out for you and Vinny. Have been reading this with interest, and felt your frustration with the *#@$ system! You should not have had to go thru all of that, and worry about your baby too. I'm glad things worked out.
 
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