October 09, 2008

WTF?? Or am I Just a Complete Idiot?

Alright, folks, I need your honest opinion. I'm six years into this mess, I'm tired, I'm BEYOND furious, and I'm not sure if I've just lost all perspective, or if this is typically how an IVF cycle goes and I was just incredibly lucky to have a smooth cycle the first time we did this two years ago.

So I need you to tell me if I should be shrieking hysterically at my IVF nurse or if I should sit down, shut up and just do as I'm told. Which, apparently, may involve me getting poked with a needle every few days from now until 2025 or until one of my ovaries decides to hack up an egg, whichever comes first.

The original plan for this cycle was a month of birth control pills, lupron, and low-dose stims. Because I have Factor V Leiden, the RE wanted me on Lovenox while starting with the BCPs to reduce the risk of a stroke. However, he wanted a hematologist to prescribe it rather than him since I'm out of state and he doesn't frequently use it in his patients.

Unfortunately, Hematologist was less than cooperative in returning phone calls, etc. So after two weeks of RE's Nurse trying to reach Hematologist to discuss this, it escalated from "we still have plenty of time" to "CD 1 is going to show up any moment now and I still don't know who in the hell is prescribing the Lovenox."

RE's Nurse went to RE and said, "What do you want to do if we can't get Hematologist on the phone?" RE responded by looking at my chart and proclaiming that we could do the cycle without the BCPs.

So RE's Nurse sends me an e-mail that very noncholantly mentions "and, oh, by the way, we've decided to skip the BCPs, so don't worry - we still have three weeks to work out this Lovenox issue."

I don't respond well to my protocol being noncholantly revised without any warning or explanation as to why. So I had a very nice heart to heart with RE's Nurse trying to understand why, suddenly, the BCPs were unnecessary and why, if the BCPs are unnecessary, they were included in my protocol in the first place. (They were also used during my first cycle two years ago with a different RE, so this is the protocol I'm used to.)

I explained that I was concerned that eliminating the BCPs would make it difficult to know the timing of this cycle, and that without knowing the timing of this cycle it would be difficult to handle little details like, oh, I don't know, plane reservations, hotel reservations, arranging time off work.

She assured me that that would not be the case. ASSURED me. Told me that all we needed was for CD1 to show up, and then she would be able to put together my calendar, and we would be off and running. We would have a plan.

I like plans. Plans are important to me. Granted, things never actually work out exactly the way they're planned. But still, I function best with a plan.

So CD1 shows up a few days after that reassuring conversation with her. (That was three weeks ago.) On CD4, I receive my calendar from her. On the Oct. 15 and 16 dates, there are the words "expect period" written across them. What the hell? RE and RE's Nurse know that I have PCOS. They know that I don't have regular cycles. So I sent a very noncholant, very sweet note that said (and I quote) "What on EARTH makes RE think that I'm going to have CD1 on 10/15 or 10/16 when my cycles range anywhere from 2 weeks to 10 weeks?" And "My understanding from our conversation on the phone was that I just needed to have CD1 show up (which it did four days ago) and then we would be able to lock in dates, so that I could lock in flight reservations, hotel reservations, etc. So exactly how confident are you in these dates, because I'm planning to make flight reservations tonight."

I got back an e-mail that said, "Oh, I'm so sorry, I must not have been very clear. Those dates are only estimates, assuming a 28-day cycle. If CD1 shows up much earlier or much later than 10/15, we'll have to completely redo the calendar, so don't make any reservations until your next CD1."

Pardon me, because I rarely curse in front of other people, but WHAT THE FUCK? She specifically told me that all I needed was CD1, and then I would have a calendar. And now that I got CD1, and I have a calendar, it's basically useless and I need to wait until the NEXT CD1??

Ok, that was problem #1. Problem #2 came up today.

Today, my calendar was marked for me to get a P4 level drawn and then start Lupron tonight, assuming the P4 results were okay. Now, I thought it was a bit bizarre that I was doing a P4 draw on CD21 when we're basing this entire calendar on some sort of assumed, fictituous 28-day cycle that my ovaries are not prone to follow, and what the heck happens if I start Lupron now but CD1 doesn't show up next week on the date that RE pulled out of his ass?

But being the good little patient that I am, I drag myself out of bed even earlier than usual this morning and head down to the lab to get poked.

A nurse (not my assigned RE Nurse) calls me almost at the end of the day to inquire about what time I got the labs drawn, because they still hadn't received results. Then she spent 5 minutes ranting about how the labs never send the results STAT like they're supposed to, and how it's a pain to have to track them down all the time, etc. Pardon me for having the audacity to live out of state, where it's not convenient for me to just pop into their office so they can run the labs onsite.

Then, still in her annoyed tone, she proceeds to tell me that she was still waiting for the lab results to be faxed, but the lab had told her the result was 0.6. "Don't worry," she said, "I'm sure it's a mistake." (Apparently the result is supposed to be over 5.) I said, "No, that sounds about right. Why would you expect it to be over 5?"

"If you've ovulated, it should be over 5," she explained in a tone that implied a 5-year-old should know this. And I do, but given that I. RARELY. OVULATE. ON. MY. OWN, why the hell would we expect that this time my ovaries would decide to just fall into line and start spewing eggs like crazy on CD 14?

When I pointed that out to her, she said, "Well, how long are your cycles normally?" Gee, thanks for taking a moment to look at my file before picking up the phone.

"Um, anywhere from 2 weeks to 10 weeks." A long pause, and then she says, "Oh. This could be a problem."


So apparently I needed not only CD1 to show up again, but I needed to actually ovulate. I'm not exactly sure why, because last time I was on BCPs, so I didn't have to deal with this.

She had no answer for me as to what the hell we do next, other than go back in a couple of days to draw it again. "Hopefully your P4 will be rising by then," she said. HA. Don't hold your breath.

I was so angry, I was crying as I was talking to her. I have a radioactive iodine thyroid test scheduled for Nov. 10 and 11. I told her I want a phone call tomorrow with VERY. SPECIFIC. ANSWERS. to two questions:

1) What EXACTLY is going to be done so that I can cycle and have a retrieval before Nov. 10?
2) What date EXACTLY should I buy plane tickets to arrive at the clinic for the cycle?

I've calmed down some, which translates into now I'm not crying as I'm writing this, but my poor innocent little laptop keyboard is still getting a pounding.

Ok, so for the one or two of you who manage to make it through what is possibly the world's longest furiously hysterical venting rant:

Is this normally how an IVF cycle begins?

And, am I out of my mind for wanting to have an actual, real date I can circle on the calendar and write in the words "IVF cycle starts today"??


MamaSoon said...

Argh! What a major major F-up! In my cancelled cycle with said clinic, I found the nurses to be less than helpful and it became incumbent on me to drive my care there. They have a plan for themselves and do NOT work for you. They are a factory with good results but you have to still be your biggest champion. And now both you and I know that. We've learned our lesson and can approach it again. I am a huge planner too. However, i've put it in my mind that the next time I go there, I'll be getting tix and hotel only days before I leave. It will add lots of stress but I've vowed to keep in mind that this is just a blip and once I am passed that moment things will even out again. Doing a cycle from out of state can be very difficult. I too will be doing my next cycle with said clinic without birth controls. And it will be up to my body when things happen. Granted, PCOS throws a huge fucking money wrench in the plan.

Ok, now why would they NEED you to ovulate to move forward? Someone on BCPs doesn't ovulate. So I don't get that part. Also, why do they NEED to talk to the hematologist directly? Why can't you see a hematologist, get a script for lovenox, and just tell them 'ya got it covered'? I saw my hematologist independently of the RE. Actually, to simplify, I think I said my local old RE recommended this.

And do you get any telltale signs when you actually do ovulate??? Like the eggwhite mucus or anything? Or a temp increase? Just in case body does participate this month...

You asked for honest opinions and mine is that you need to make peace with the idea that if you cycle with them, you will be stuck waiting, waiting, waiting and then QUICK GET TIX AND HOTELS! Do yourself the favor of not resisting what you cannot change.

You are a trooper. They messed up by treating you as a generic patient without considering your particularities. Now you know this and you can be ready when you call to question the choice and ask them to defend why that works for someone with Factor V or PCOS or who is out of state. Sigh. This wasn't very professional of them. They are above all a business. It is soooo obvious. My old RE was so sweet and his staff rocks. But he couldn't get me pregnant. So now I am ready to tackle these meanies for my golden egg.

Grad3 said...

I vote for WTF???

As a fellow PCOS'er (but not an IVF'er) BCP is how we help CONTROL our cycles. Of course we don't ovulate on our own, it's on our indicators of PCOS. And you can kiss CD14 out the window, try CD 33 (if you're lucky!!)Is the nurse new to the fertility world?

I have Factor V as well (one trait) so I was a "therapeutic" dose of Lovenox (aka- 40 units) and I don't see why your RE won't prescribe it.

I also didn't get my labs drawn on site but the RE's office would always call and tell that it was stat- does your office not do this? I know they are out of state but stat is stat.

The IVF protocol that you first described sounded right (at least from the research that I have done). I get on BC even if they tell you once again not to take them. Seems that the nurses may not be the brightest lights in the closets.

I think that mamasoon may be right about accepting the waiting until the last minute if you stay with them- which it sounds like you are wanting too.

You aren't an idiot by any means- you are paying an awful lot of money to try and have a child. You want and DESERVE quality care and information.

GL hun and I hope that your next CD1 is right around the corner. ~Big Supportive Hugs~

Silver said...

Hi there, I came across your blog while Googling "intralipids" because I'm trying to make a decision (before tomorrow) about IVIG. Our situations seem similar - I'm 39 (so a bit older than you), have PCOS and insulin resistance (am pre-diabetic and on Metformin), I'm heterozygous for FVL and have subfertility and recurrent losses (6 very early ones to date). I'm hypo- rather than hyper-thyroid and on thyroxine. Like you, we've also been at this for almost 6 years now. I've tried Clomid, IUI and straight IVF - all a resounding failure, with the 6 losses all coming from natural pregnancies, bizarrely. We're in the UK and in the middle of a last, "chuck everything at it" IVF cycle - Met, aspirin, steroids, IVIG, array CGH on my eggs, ICSI, clexane, progesterone and oestrogen for luteal support. As much as anything else, we want answers (sure, a baby would be nice!), and to get to the end of this and feel like we've done all we can. I just wanted to wish you luck and to say that if you ever wanted to compare notes on our combination of medical wierdnesses, I'm up for it.