My Story

The chronicle of the journey from infertility, to miscarriage, to finally raising twin girls born in June 2012.

Saturday, May 28, 2011

Shopping around

Had a major breakdown yesterday.  Wailing, crying, couldn't stop for over an hour.  I partially blame the Lupron, but there are some other factors.

Ever since my IVF clinic merged with a larger clinic, I've been noticing little signs and hints that they are now more about profit than they are about medical care.  A few of the growing pains are totally forgivable, when two businesses merge, there's definitely going to be some changes in how you handle the day to day stuff.  And I've been annoyed by those growing pains, but I understand some of them.  But here are a few of the changes I've had to deal with:

Call center - it's almost impossible to call and get through to a person.  When you do get through to a person, it's obviously a call center monkey who has no clue as to what you're talking about and therefore no clue as to who to forward you to.

The old email system is taken away - So you can't really contact a doctor with questions directly.

Personnel change - When I came back to the clinic, my favorite no-nonsense nurse had resigned.  I suspect she saw the bullshit on the wall and got out.  I'll tell you something, if I find her working at another clinic, I'm going to that clinic no matter what!  And the financial counselor left shortly after the merge as well.

Financial changes - They no longer have plans for those of us who are good candidates for IVF.  They used to have plans where you could pay upfront for an entire IVF round at a discounted rate.  We prepurchased that plan just before the deadline of it being phased out in order to guarantee that if this FET doesn't work, we can do the fresh round for a discount.  But the plans that they offer now are only for several rounds of IVF, and once you have a live birth, the contract is null and void.  So you can prepurchase three rounds, but if the first one works, you can't get a refund or use the extra rounds later.  In other words, they get as much money as they can out of you, up front, based on fear, and you can't get any of it back if those fears don't come true.

They only want the good patients - They now appear to be attempting to screen out any patient that might have complications.  They now require a mammogram and pap smear before proceeding.  Excuse me, but if I were to find something potentially cancerous in my body, the first thing I would want to do would be to harvest and freeze as many eggs as possible before going into chemo treatment.  But ya know, that's just me.  But of course, they won't move forward if anything is found.  Further evidence of this as I tell you about my appointment yesterday.

There were a few really awful things about my appointment yesterday.

We had a brief chat about the weight issue and how it affects whether or not they'll do a fresh round of IVF if this FET fails.  The clinic is still in meetings to determine the BMI cut off point (I'm just a little bit above one of the numbers they are contemplating, but quite a bit over one of the other numbers).  He tells me about the fears of the anesthesia technicians of working on a larger person, it requires more of the drug, harder to balance enough drug but not too much to do damage, etc, and he's talking about people who might gain another 50 or 60lbs during the pregnancy so the potential end weight has to be taken into account.

And then he said something, offhand, that just floored me.  "Well, saying we won't help you get pregnant is a great motivator to lose weight!".


As if fat people aren't despised enough in this society, but now you're going to hold my ability to become a mother hostage until I lose weight?  Fuck you assholes!  One of the primary side effects of having PCOS (one of the main reasons people seek fertility treatment) is weight gain and extreme difficulty in taking weight off.

And a year ago, when I was 15lbs heavier, that same doctor told me that 6 months of youth was more important to success than losing 30lbs.  Because we had that conversation a year ago.  I specifically asked him, would we be smarter to spend the next 6 months losing weight before we attempt this, or would it be smarter to have eggs that are 6 months younger but from a fatter woman.  One year ago, the younger eggs were more important.  But now that I'm a year older, suddenly it's more important to lose weight???

Ya wanna know what I think this is?  Yes, there are more pregnancy complications when you're heavier.  And since I didn't get to a live birth, I feel like I'm being punished for messing up their success rate numbers.  Successful IVF, but no live birth.  I'm no longer one their success stories.

Just to reiterate - my miscarriage had nothing to do with my weight.  What happened to me was like getting hit by a car.  It happens sometimes, but there's no reason to think it will happen again and really had nothing to do with my body's ability to carry a child to term.  My girls were healthy until the infection got to them.

So, that little comment made me hate them.

But here was the other thing that happened - K and I currently have a cold.  Just a standard cold.  I don't have a fever, just a cough and full nose.  So the doctor said maybe we should stop this attempt since I'm not in optimal health.  But we reminded him that we aren't transferring for another three weeks and I'll certainly be over this by then.  It's already been with me for a week, it should clear up over the next week.  So I'll have been healthy for a solid 2 weeks or so by the time we implant.  He seemed confused by this.  And kind of muttered "why are we waiting so long?".  The nurse then reminded him, that the clinic now does a 6 week protocol for FET's.  "Oh that's right, ok, so this should be fine."

Excuse me?  YOU'RE my doctor dude and you didn't know this?  You're not the person that determined that this was the proper way to treat me?  My treatment did NOT originate from YOU?

I have a REAL problem with that.  So he goes on to try to assure me as to why this is perfectly fine.  That the protocols are established by tons of research and yes, each clinic comes to a slightly different conclusion as to how to go about things but that the conclusions are based on all sorts of information and research and blah blah blah.

I don't give a shit.  I don't want my doctor to be a bystander in what's happening with me!  I want my care to be determined by a human being who has looked over all of my personal test results, and has determined the best protocols specifically for ME.  This just proved to me that my care is being assigned by a bunch of strangers who've come up with a bunch of statistics on a piece of paper.

But fine, we're moving forward with this attempt.

And then after the appointment, they tell me I have to check out and hand me a folder to hand to the checkout person.  I stand in a random hallway outside of her office while she's checking out someone else, another couple comes to hang out with us, we're all stacking up in this hallway (they have a front desk, why aren't we stacking up there?) and a pregnant technician is walking through our little cluster from time to time as she goes about her business.  It's finally my turn and I had the woman my folder and she asks me if I need to schedule an appointment.  How the fuck should I know?  You people are supposed to know this shit and be informing ME of what needs to happen next! 

Argh!  So we storm out because I'm so pissed and frustrated.

A couple of hours later, my nurse (the nurse that I've been with since my original attempt so I've gotten to know her pretty well) calls me to let me know what the next steps are.  She's been stuck listening to my frustrations all along, and I give her another earful.  But this time, I tell her that clearly the doctor himself doesn't understand what my issue is.  That's it's just been proven that he's not the person in charge of my care.  And apparently they had a talk about that very thing that day.  I guess shortly after I left.  But I tell her straight up that if not for the fact that I'm already in the process of all of this and feel completely trapped, I would never choose to be a patient there.  They have me trapped so I have no choice but to continue to use them, but I really don't want to.  She listens patiently, but of course there isn't much that she can say.

So at the end of the conversation, she tells me that I need to schedule 2 appointments and she'll transfer me over to the appointment people.  I make her to tell me exactly what my appointments are for so I can write them down despite the fact that she says "Oh I've already talked to them, they know what's going on and just need to get the time on the books".  And then she transfers me.  And I have the following conversation with the person who is supposedly expecting me.

Hi, I need to schedule an Estrodial on June 4th.

What’s an Estrodial?

I don’t know but I’m supposed to schedule one.

Well I don’t know what that is either so I'm not sure exactly how to schedule it.


The day passes and in the evening, I think back to what that doctor said to me.  How refusing to help someone get pregnant is a great motivator to get them to lose weight.  And I start crying.  Uncontrollably.  This clinic has merged with the largest clinic in the area, I don't think I have any choices.  I start panicking.  Does this mean I might have to go to India to get someone to do this for me?  Frak, for the price it would cost to do that, I could just get liposuction to get under the weight and then they'll both help me AND I'll be thinner.  I mean, I seriously started freaking out last night.
And again, I'm being punished.  Punished for having a miscarriage.  Punished for being fat.  And I'm being judged.  My parental worthiness is being judged by a bunch of assholes with success rate statistics.

Hmmmmm, I take it I'm not the first person annoyed by this changeover?  And they talk about assisting people with the financing because they don't want money to be a deterrent to parenthood.  And that they take older patients because they want to help people, they aren't concerned with falsely inflating their success rate numbers but rather they focus on helping people who need help.

K walks in while I'm still somewhat hysterical and I show him that there's another clinic in the area.  He does his best to calm me down but I'm getting hit with wave after wave of upset.

Once I'm finally in a place where I'm able to carry on a conversation, we talk about what happened at my appointment (he was there for the whole appointment btw).  And he finally gets it.  He finally sees what I've been seeing for months.  That they are now more concerned with their profits and the numbers they can use for advertising than they are with medically assisting people.  They have gone from medical facility to for profit business.  He finally validated my fears rather than trying to convince me that they are unfounded.

I emailed the new clinic with my entire ivf history, asked if they will do egg retrievals for a big girl, if the costs are comparable to the money we spent on the prepurchased plan (we can still get a refund and apply it elsewhere), and how many hoops I would have to jump through to become a patient at their clinic.  We don't want to go through the energy and expense of doing all of the same initial testing that we've already been through, but if those medical records can be transferred and we already know what medicines work for me and which ones don't.  If they'll trust that history and simply move forward from where we are rather than insisting that we go backwards 30 steps, then if I'm not pregnant from this FET in July, we are probably going to transfer to this new clinic.

I emailed them on Friday night of Memorial Day weekend so I don't expect to hear anything back until Tuesday or Wednesday.  But it would take a lot of pressure off of this FET attempt to know what I'll have another chance if this fails.

The last 6 months have sucked so bad.  And now I'm feeling guilty about not using those months to diet and get my weight down.  But really, when have I had a chance to add the stress of dieting on top of the stress I've been having?  I've been mourning my two babies, a skin cancer scare for me, a stomach cancer scare for K, a brain tumor scare (which we still aren't certain isn't there), 3 weeks of hormones only to stop the attempt, and now I'm about 3 weeks into another hormone regimen.  Seriously, when have I had a chance to diet?  And now I'm living under the threat that if this attempt fails, I'm going to have to live on lettuce and the treadmill for at least 2 months before they'll give me another opportunity to get pregnant.  That's A LOT of pressure!

So I'm really hoping to hear back from this other clinic saying they'll help me.  That would really relieve the pressure, which will give this attempt a better chance of succeeding, and I'll feel better about working with different people if this attempt fails.

I'll be emailing my OB next.  See if he's heard anything good or bad about this other clinic.

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