October 30, 2008

Help - A Medication/Packing Question

For once, my body has cooperated. I finished the Provera last Friday, and CD1 showed up yesterday. That means we purchased plane tickets last night, stims start on Sunday, and we're jetting off to the clinic on Tuesday night (Election night) so that we'll be there for the first stim u/s on Wednesday.

Now, for a stupid question: How do I transport the stim drugs, which require refrigeration? I don't want to send them ahead, because I would be nervous about something happening to them. But how do I keep them refrigerated for 2 hours at the airport, a 2-hour flight and then the 2 or 3 hours while we collect our luggage, get our rental car and get to the hotel?

When the meds were shipped, they came in cold packs, but I don't know if those are reusable. (And, come to think of it, I don't know if R kept them or tossed them in the trash.) Last time we did this, we drove to the other clinic, because it was much closer. Because of that, we were able to just stick them in a cooler in the trunk of the car.

There's probably an easy answer staring me in the face, but frankly, I'm too tired to see it.

October 26, 2008

Poking Along, Literally

Ok, so that title is bad attempt at being punny...sorry to make you endure it, but it's the best I could come up with.

The Lupron shots are going fine; stim shots start next weekend.

So far the side effects are the most challenging thing. In the past, I've never had an issue with Lupron, but this time around I'm getting headaches. I'm also on an anti-depressant that makes me very, very sleepy, to the degree that if I know I'm not going to be able to get at least 7 hours of sleep, I skip the dose that night because it wouldn't be safe for me to drive the next morning if I took it. But the dexamethasone is giving me insomnia. So now I lay in bed, so sleepy that I can barely even open my eyes, yet every 10 minutes or so I wake up, toss and turn, then fall back asleep for a few more minutes. Somehow, R is managing to sleep through all of that. Oh, well, one of us getting a decent night's sleep is better than nothing...

Now I'm heading upstairs to start planning how to pack for this upcoming cycle. Because this time around is a different clinic and we are not driving, I'm not going to be able to pack everything like I did last time. (Imagine your parents' station wagon, crammed to the top of the windows and with luggage roped to the roof, for a week-long road trip with 5 kids - that's what our car looked like.)

Unless I plan to take up the overhead bin space for me and 9 of my closest seat mates on the flight, I'm going to have to pare down the list a bit...

October 21, 2008

Breathing In, Breathing Out, Beginning Injections

I know my last post was one big, long, hysterical shriek. You'll be glad to know I've calmed down quite a bit, and we're moving forward with our cycle.

I was able to talk with RE last week. He explained that he tested for something called anti-Mullerian hormone, and my level was lower than expected, so he thought it would be okay to skip the birth control pills. (He believes there's still an increased risk of blood clots even if I'm taking Lovenox, though other doctors seem to disagree. But then again, when does anyone in the medical community agree about anything? But I digress...)

I've never heard of AMH before, but apparently it gives an indication of how severe one's case of PCOS is. And if RE's nurse had explained that to me a month ago when I first raised my concerns, I probably would have been (at least slightly) less hysterical about all of this.

RE made it clear that he was not happy being questioned, but I'm not the type to move forward without being comfortable with something, so I guess we're both going to have to learn to give and take a bit.

Speaking of not being comfortable moving forward, I've decided that I'm not on board with the radioactive iodine that is involved in the thyroid scan and uptake test. Apparently radioactive iodine (RI) has a half life of 11 days. I spoke with a radiologist today who said it would be fine to do a transfer three months after the test, but if the test causes them to recommend that I take the full dose of RI to kill off my thyroid, I'd have to wait an entire year before trying to get pregnant. And my family physician and RE both said they've had patients who have required 2 or 3 doses of the full RI treatment before it worked.

R and I talked about it tonight, and I just don't feel okay with the idea of putting any sort of radioactivity in my body. We've gone through hell these last 6 years, and now that we've found a possible answer to some of our losses, I don't want to take the risk of causing damage by ingesting the RI. So I'm going to call my family physician tomorrow and set up an appointment to talk with her about skipping the scan and whether she would be willing to take the approach of just treating it with medication (which may require some trial and error to get the dosage right) or having surgery to remove the thyroid and then start Synthroid for hypothyrodisim (which is a lot easier to control with medication than hyperthyroidism is.)

Someday, I keep telling myself, all of this medical drama will end. But in the meantime, I'm off to give myself the first injection (Lupron) of this cycle - here's hoping R and I don't get the dosage wrong, which has happened before.

One last thing: Thank you to those of you who commented - I appreciate the honesty and support. I will be catching up with all of you soon, hopefully within the next few days. (I want to get the shot done and get to bed before midnight tonight, so I'd better get offline now...)

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"??

October 05, 2008

Turns Out, I Can Blame the Hyperthyroidism

This week, my doctor's office hooked me up to a bunch of wires and then took my blood pressure again to determine what's causing it. It's a test called ICG.

I didn't even know a test existed that could tell you what is causing high blood pressure, but I love the ICG test - my results were "stellar" (to borrow a word from the physician assistant), which means that I don't have any of the conditions that cause primary hypertension. In other words, my doctor is confident that my high blood pressure is 100% caused by my hyperthyroidism, and that when we get that under control, the high blood pressure will go away.

So, yea! I may have issues - lots of issues - but at least the high blood pressure isn't really one of them.

It took a little while for that to sink in before it dawned on me what this means. I assumed the hyperthyroidism was something new, but the high blood pressure isn't. And if the high blood pressure truly is being caused by the hyperthyroidism, that means the hyperthyroidism isn't new, either.

I've had high blood pressure for a few years, but my family physician and my ob have always dismissed it with comments of "oh, you're just stressed," or "you probably walked back to the exam room too quickly from the waiting room" or "I know you're concerned about miscarriage, but you really need to try to calm down."

Okay, yes, I KNOW how insane all of those excuses sound. But I didn't want to believe I had high blood pressure, and they didn't seem to think it was a major concern, so I just chose to ignore it. I don't know exactly when it started, but it's been at least two years, probably more like three.

Hyperthyroidism can cause miscarriage. If my blood pressure has been high for three years, if I've had hyperthyroidism that whole time, I've had it for at least 4 of the 5 pregnancies that ended in miscarriage.

So when I got home from the doctor's appointment, I decided to look through my lab work from my old family physician. It turns out I've had low TSH readings (one of the classic signs of hyperthyroidism) since as far back as 2001. 7 years! Granted, there have been times since then when my TSH has tested normal - it was about 50/50 normal readings and abnormally low readings.

My guess is he assumed since my T3 and T4 levels were normal, that I didn't have it. But my mom had hyperthyroidism when she was 21, and he's been her doctor for the last 25 years as well as mine, so I would have thought that he'd say, "Gee, she has a family history of her mom having it when she was in her 20s, now she's showing signs of it in her 20s, maybe we should watch this closely." Even now, my T3 and T4 readings are still normal, but my doctor is confident in the diagnosis.

For whatever reason, I never closely examined those records. I can't believe I overlooked them. I mean, given all the time I've spent poring over web sites, dealing with all the infertility diagnoses, how could I miss something as basic as this? For 7 years?? But then again, maybe it's exactly because I've been dealing with all the infertility stuff that I didn't have the time or energy to pay much attention to non-infertility (or so I thought) test results.

I've checked with a few docs, and they all seem to think it's okay to do the retrieval now, but I definitely have to have the hyperthyroidism under control before we do a transfer. So we're going to go forward with the cycle this month, and then I'll do the nuclear medicine study next month and we'll figure out how to tackle the hyperthyroidism from there.

So in a very unexpected, bizarre way, I actually have more hope for this coming cycle now, because maybe the hyperthyroidism is part of the answer. It just would have been nice if we had gotten this answer several years ago.