an update on me (LONG)

iVillage Member
Registered: 03-11-2006
an update on me (LONG)
Fri, 08-27-2010 - 12:47am

hi ladies,

it's been awhile since i've checked in, so let me catch you all up to speed.

we did an IVF cycle in june that was a BFN. it was our first since noah, and our third of four total that our insurance covers. since february, my arthritis (which i've lived with for 30 years) has been getting progressively worse, and may, june and july were probably the worst months of my adult life, arthritis wise. hands down, the worst flare up i can remember since i was maybe eight years old.

anyways, so IVF failed, RA was out of control, and i have just felt all over the place. after my IVF failed, i called to switch rheumatologists, which i've been thinking about doing for sometime. the new doc wanted to run a bunch of new blood work and gave me some shot that she said would give me relief a few days and last a few weeks. well, it didn't work. on top of that, the office called a few days later and said my hemoglobin and hemocrit were low and i was very anemic.

now mind you, i'm always kind of borderline anemic, because i have hererditary blood disorder that causes anemia. but the doc was concerned that i may have internal bleeding, and ordered me to stop one of the meds i was taking and re-do the blood work in two weeks. i stopped the med, and continued feeling sh*tty (never really stopped).

right around this time, we have our open enrollment mtg at work. now - i work for a non-profit that is basically funded by state grants, aside from any donations we take in (which isn't much). if you aren't aware, the state of illinois is the definition of a hot mess, and my program is basically getting a 14% cut in funding this year, which amounts to more than $200,000. so we're not in very good shape, and therefore, insurance costs are going up significantly. they are raising co-pays to $40, dropping their portion from 70% to 65%, and offering a second PPO option in addition to the PPO i'm currently on. the new PPO isn't an option for me, because the pediatrician does not take it. the HMO is not an option because th RE does not take it. so, in order to keep all of the 10 or so doctors between me and noah, we stick with the current PPO, which is great, but the family cost is going from $500/month to $740/month. i am basically working to pay for insurance now...

in the meantime, i'd been researching reproductive immunology(RI), because of my history of RA and fertility problems and whatnot, and decided to make an appt with dr carolyn coulam in chicago for a consultation. now, i LOVE love love my RE and everyone at the office, and really don't want to switch doctors, but want to explore all my options. from what i've read, dr coulam is one of THE gurus of RI and i really want to do what she suggests, and what she suggests is a battery of immunological testing. however, they only work with this ONE lab, that does not take insurance, and you have to pay the fees up front and then try to negotiate with insurance. well, the testing costs $1350, and my out-of-pocket deductible is $1000, so insurance *might* pay 30% of the remaining $350, which is $105. and the blood work might now even provide any new information!! so now i have to figure out how to justify spending $1200 for bloodwork that might be meaningless...

and we're at a weird place with our IVF insurance coverage, and i feel like i need to save my pennies and dollars for the very real possiblity of having to pay for cycles beyond the one we have left. i know i have no right complaining about paying for cycles, since i know i'm among the minority who have insurance coverage, but we are NOT in the financial position to pay for IVF. if IL didn't have the fertility coverage mandate, i don't know where we'd be.

i'm having a hard time knowing what to do next. i am finally feeling better, RA wise, but only because i'm taking steroids right now. i want to move forward with my cycle. i want another baby so bad it hurts. i am dealing with the anemia - saw the hemotologist today and he thinks the low hemoglobin was related to my RA flare and not due to internal bleeding or iron deficiency (as another doctor suggested).

so that's that. thanks for letting me vent. any thoughts, advice or ideas are welcome. :)


TTC #2
TTC #2
Avatar for witzz
iVillage Member
Registered: 08-16-2004
Fri, 08-27-2010 - 4:16pm

Hi Mindy,

I don't have any advice for you, because you're already doing everything I can think of! So sorry to hear about your intense RA flare-up, and the BFN. It also sucks that you have all of the additional health care costs thrown in. I'm keeping my fingers and toes crossed for you, that you will have a second child, and soon!

The only thing I wanted to add is that we also wanted a second child, though not as badly as you do... and it didn't work out for us. At this point, we are focusing on the family we have, though not without the ambivalence. Meanwhile, my brother adopted a child and has another adoption in progress, so I've seen how that process goes as well. Just giving you a view from the other side of some decision points that I hope you will not have to face!!

Best wishes,

Mom to Lucy, 4.5

iVillage Member
Registered: 09-21-2001
Fri, 08-27-2010 - 9:28pm


I am so sorry that you are having a tough time with your RA and with the insurance mess.



Signature 2010

iVillage Member
Registered: 09-12-2003
Fri, 09-03-2010 - 6:42pm

sorry about the BFN and the RA flare up and insurance nightmare. We live in MA where fertility is SUPPOSED to be mandated but its still not a guarentee. DH company that we get the insurance through because mine is SUPER expensive is self insured so they can bipass mandated coverage and if we took mine we can't afford monthly expenses. Luckily they didn't drop IVF until after we got pregnant with Liam but it definately hindered us having number 2. We were lucky and got a suprise.

They are bracing us at work for a BIG increase, DH work already TRIPLED after MA went to universal healt, my work was locked into a rate but only last year and in a similar situation we are a non profit that USED to guarentee student loans until Obama shut down the stafford loan program so we are pretty much treading water hoping for a gov't contract or even subcontract and until that riding the tale of what was left in our portfolio...yah the last 2 years have been pretty sucky but guess I am lucky still have a job...


iVillage Member
Registered: 09-22-2009
Sat, 09-04-2010 - 1:59pm

Hi Mindy-

I just wanted to chime in about something with your insurance. We have had NIGHTMARE insurance through my husband for the past couple of years. It was based out of the midwest so we didn't have almost anyone who took it out here, so we have been in a position to try and find the best coverage for us.

You mentioned about not being able to take the the current PPO or HMO because your ped doesn't take it and your RE doesn't take it. Just a thought--if you are basically working to pay insurance, you may want to look at either of the more affordable options and see what you would have to pay out of network to see just those providers. For example, our providers are 90% in-network and 70% out of network. When you figure in the PPO discount that both give, it ended up being a (mostly) $20 or difference between visits for our OB/RE or even less (under $10) for our ped. So, just because they are out of network doesn't mean that they aren't covered; just that you have to pay a bit more out of pocket. So, if you are weighing the costs of what you will automatically pay in just coverage you might want to think about that and go with the old one. Just a thought (again, I don't know how yours works).

I am sorry your RA has been flaring up so often. I hope that the new doctor can find ways to help you with it and at the same time, give you ideas for getting pregnant wit AI disease. When is your appointment?? Sounds like a tough decision for the bloodwork aspect of it; I would go to the new doc and ask about the benefits of having it. What are they really looking for doing all of this?? That way, you can make an educated decision about if you want to move forward. $1000 out of pocket is a lot of money.

(((sigh))) its never easy for us, is it? I hope your RA stops flaring up so much and your relief continues. KUP on everything, OK?


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