Pregnant but still infertile

I haven't been writing much because I have not had a whole lot to say. Mostly, being pregnant is a happy experience, but there's not a lot more to say. I'm done with my betas, my first ultrasound is not for a few more days, and I've had a few days of nausea but nothing serious. Honestly, the most significant part of being pregnant is just remembering that moment when we saw the positive test, and feeling the tears that still come to my eyes.

However, there are some moments that jump into my face and make me remember that hello, I am pregnant. And hello, I am not a normal carefree pregnant lady. Here are a couple of examples:

1. Medications. I am still using progesterone twice a day, and switching my four estrogen patches every three days. I still take my baby aspirin each morning. I am exhausted all the time. I don't know if that's normal first trimester tiredness, or if it's the mega dose of progesterone and estrogen that I am giving myself morning and night. In any case, it ain't cheap. BUT I had a small moment of victory when my insurance actually sent me this:

Yes, this is more expensive than gold.

For those of you who have not spent a fair amount of your life savings on infertility treatment and medications, these four boxes represent only a 30 day supply (and I've been on this stuff for 4.5 weeks already, and will remain on it for 3.5 weeks more). And are you sitting down? This one month supply costs $900. Yes, NINE HUNDRED DOLLARS. Till now, I have been paying for it out of pocket, but after many phone calls to my hated insurance company's pharmacy, they are now covering it with a $60 co-pay. Since pregnancy is covered, they have to. But they certainly dragged their feet, making me shell out several hundred dollars more while I waited. Anyway, it felt like a huge victory when they finally sent this to me. I actually have two refills that I hope I won't need, and I plan to fill those suckers and either keep them for my future self or share them with women in my support group who don't have insurance coverage for fertility either. But overall, the point is, it sucks that this medication costs so much, and that insurance doesn't have to cover infertility. You can have any number of self-caused medical conditions that insurance pays thousands of dollars for, but infertility? Nope. WHY? It makes no sense, and is so deeply unfair and unjust.

2. A good friend of mine (normal friend, not infertility group friend) just found out today that she is pregnant. I am absolutely thrilled for her- she'd been trying for a few months with no luck, and was beginning to worry. But I was shocked that she is just 5 weeks pregnant and wants to go to pregnancy yoga classes, and has already told a ton of neighbors, and is so carefree and gleeful. I mean, I guess that is normal? But coming from an infertility perspective, pregnancy is joyful, but it's NOT a sure thing. I have known too many women with miscarriages and complications to just tell the world and not even consider the first trimester a time for caution. What must it feel like to have such a trusting, carefree attitude towards your body? Not to have to pump it full of chemicals, not have three betas and an ultrasound all before 7 weeks? They don't even want to see her till she hits 10 weeks, assuming that she is all fine and no care is needed. It all sounds so foreign to me. All I can hope is that infertility will make me value my pregnancy and child more than I would ordinarily? Is that even a reasonable thought? Don't most mothers love their children, and can you really rank such a thing? I don't think so, and this is probably a topic for a longer, more thoughtful blog post. But anyway, it's hard to see her unabashed celebrations, and remember that I am still "high risk" and still being monitored closely and still taking tons of medications just to keep myself pregnant.

To sum this up, I'm not saying pregnancy after infertility had been particularly hard or traumatic for me. It's just that I notice these things more and think about them quite often. It's hard to realize how precious a thread an IVF pregnancy hangs on, and though I have no reason to worry, it's hard not to with all the appointments and blood tests and the early ultrasound. I hope I can gradually feel more like a normal pregnant person, and that being pregnant the same time as my friend is a happy experience, and not overwhelming in its contrasts. Someday, if all goes well, I'll have a baby, and that's what really matters, not how hard it was to get him or her here with us.

Trigger Day!

I haven't updated in awhile, not sure why. I've been emailing with friends to share my progress, and keeping track of it all in my little blue book (which Dr. M asked me about yesterday, as I was frantically writing down follicle sizes during my ultrasound- he probably thinks I am a totally neurotic weirdo). Here is my little blue book that goes everywhere with me nowadays:

And here is one page from inside, with my estradiol readings from all three of my IVF cycles:

Now, to sum up the past 4 days: on Friday we went in for an 8:45 appointment, where we saw that my follicles were continuing to grow but I was not showing a whole lot of improvement. I had 4-5 follicles measuring around 10mm. My lining was 6, which is thin but not terrible. I was disappointed, but later we learned my estrogen had doubled- which is a good sign. But it was still low, just 191, and you can see from the chart above that it was much higher my first cycle. 

We went back Sunday, and saw some improvement. My lining had gone up to 7, which is much better. Ideal for implantation is anything over 7, though somewhat higher is even better. As for follicles, they had really improved: I had six ones over 10mm, and two at 8.5mm, and about 4 under. They said I was getting very close. My lead follicle was 15.5*13, with some 13s and 11s. My estrogen came in at 489, which was a big step up from Friday. We were asked to come back again the next day to see about triggering.

So, we came back Monday, and things were looking even better. Lining was at 8.3, and I had a couple of follicles at 18 and 18.5 (lead one at 18.5*13.5), and a total of seven over 10mm, with six of those over 12mm. My estradiol came back at 765- a big jump, considering it was only 24 hours, not 48 hours like the others. 

To sum it all up, we decided to keep me on one more night of meds, but we dropped my Follistim to half what it has been. This morning was my last Ganerelix shot, and tonight I trigger at 7 pm. I go in for retrieval at 7:30 am on Thursday. Transfer will be Sunday.

I'm feeling really positive, much better than at the start of this cycle. This different protocol has led to similar results as my first cycle, but way, way better than my second cycle. Of course we won't know anything definite till retrieval, but I feel hope again. I also feel weepy- but that, of course, is mostly my high estrogen levels. I also want chocolate! And cookies! All the time! But I am trying to control myself  :)

In other news, my 97 year old granny is nearing the end. My mom just sent me this email, which is so sad. I had to put my head down and cry at work for a couple of minutes, but it's also such a sweet email too. My mom is wonderful and I hope I end up making this come true: 

"End of life is a very difficult thing.  I am hoping that the end of my mother's life will coincide with the start of my granchild's life.  Wouldn't that be a fitting gift of the cosmos? Did you know that you were conceived on my 32 birthday?  That is a cosmic gift too.

I am off to sit with granny for a bit now. 

I love you sooo much. you are wonderful.

xxxx ooo mom

Day 5

This morning we went in for my first check-up since starting stims. It's day 5, which means I've had 4 nights of shots already. I'm on 300 Follistim and 150 Menopur. I feel fine so far. A little tired, but not bad. And that could just be that it's winter, and cold, and I've been very busy lately. 

Anyway, the nurse practitioner just called. She started the call with, "Good news!" And she seemed totally fine with it, but my estradiol (also called E2) is only 88. 

It was 13 last week. She said all that matters is that it's risen.

But I feel funny- I mean, it was 99 on day 4 at my old clinic for my first cycle, and then 44 that second time I did IVF. And this is one day later than they tested at that clinic. So this number is higher than my second cycle, but lower than my first. 

Oh well. Nothing I can do but go back on Friday.

I'm pretty calm this time. I just feel resigned. What will happen will happen. I mean, I want to freak out, but I know it won't help.

The next two days are going to feel very, very slow.

I hate you, or the ordeal of ordering medicines

Dealing with expensive IVF medications is awful. My first two cycles, I had to deal with a clinic that stressed me out almost as much as the actual IVF outcomes. Now I like my clinic, but the medication-ordering process has been a comedy of errors. Except  not really a comedy. More like an expensive and stressful disaster.

Basically, my insurance covers very little. They do cover monitoring appointments, at the specialist co-pay of $70 a pop, but they do not cover the IVF procedures or the medications taken in conjunction with IVF. So when it came time to order meds for this cycle, the nurse called them into a mail-order pharmacy for me. But then a woman in my support group with my same insurance told me that our insurance was covering her meds! Since I had already tried my insurance's pharmacy (Medco) a year ago for my IVF meds and been denied for everything except the antibiotic Doxycycline, I hadn't been planning to bother trying again. But when my friend's order will filled for just a few hundred dollars instead of a few thousand, I asked my clinic to call it again- just in case.

Well, as I fully expected, I was denied. I talked to someone at Accredo, which is Medco's specialty pharmacy. Confusing? Yes. I did not fully understand this then, but this is how it works: Medco is my insurance's pharmacy. You can get things cheaper through them than through going to CVS. The catch is that they mail it to you, so it takes longer. However, if it's a specialty (read: super expensive) drug, then they send it to Accredo. But for the consumer, it's seamless. They transfer the call, and you don't really realize you've been sent to a whole new organization.

So when I was told by Accredo that all my drugs were denied coverage, I took that to mean all of them. I mean, I did say "all of them" and she said "yes." So I ordered everything through Alexander's and paid $2000 out of pocket. I got another $600 of drugs from a friend who had leftovers. And that, I thought, was that.

But IVF life is never that simple. This past Friday, Medco called to tell me they were about to ship my meds. Um, what? Yeah, it turns out that Accredo had rejected my order for specialty meds but Medco was willing to fill my order for the non-specialty meds: the Doxycycline, another antibiotic known as the Z-pack, and the estrogen patches I'll take after transfer. They were willing to give me this for $46, rather than the $230 I'd already spent.

I was pissed, needless to say.

The explanation: they told me I'm denied, but I wasn't really. I was only denied the specialty drugs, but she did not clarify that on the phone with me and I thought she meant all of them. And then they wait a week- more than a week- to call me and say they will cover the non-specialty. So now I'm in negotiations with the fertility drugs manager to try to get reimbursed. Of course he's a total jerk and while he's admitted they weren't clear in what they told me during that first phone call, he also spent a long time arguing about how I should appeal every decision. This is stressful enough- I don't need to waste my time and energy fighting over this. And what cause would I have for an appeal? None. They don't cover IVF drugs. It's very clear, in writing, and I accept that. Somehow my friend's were covered, but even my nurse thinks it was just a mistake somehow. Lucky her, but it has no bearing on me at this time, and i have no logical reason for an appeal.

Meanwhile, the same day, I also received the FIVE denial letters in the mail, for the specialty drugs that they won't cover. That is what is in the photo above. FIVE letters, all several pages long, with the appeal process and a bunch of other mumbo jumbo. Really, Medco/Accredo? One letter with a list would surely have been enough. Talk about healthcare inefficiency!

Anyway, I can't waste any more time on this crap. I got my drugs, I paid too much but that's the way it goes. In all likelihood this is my last IVF cycle, and I need to focus on relaxing and staying calm during this one. And so far, I'm doing that.

Not good

Just sent this to my support group friends, and didn't see a need to write anything new for this blog. I think this about sums it up:

As you all know, my day 4 estrogen was only 42. Last cycle, it was 99, and the clinic wants to see it 150 or above. 

We upped my dose from 225 to 375 units of Follistim. That comes to... oh, $350 a night, not including any other drug. Fun.

Well I went in today for another check at 7:30 am and they JUST called back, and I'm still only at 120 estrogen. Not good. I knew it wasn't good when they hadn't called me all day.

They don't want me to come back till Sunday, when we will check again and decide whether to cancel the cycle or not. I only have 8 antral follicles and last time I had 11 at this time. Things are looking pretty bad. Meanwhile, I get to spend another $1000 on the Follistim. I wonder if I lose one of my Attain "tries" even if this is cancelled?

The whole thing totally sucks and there is nothing I can do. Sunday seems a long way off. Happy weekend to me. 

I have nothing positive to say. That's my update. My body hates me.

Day 5: Not a Good Day

Yesterday I got bad news. At 3:45 pm, the nurse FINALLY called me back with my blood work (probably though  not definitely because I sent a worried email to her right before that). Since I started on 225 IU of Follistim, instead of 175 like last cycle, I assumed my estrogen would be higher than 99, which is what it was last time. They like to see it 150 or above.

Well, it wasn't higher. In fact, despite my higher dosage, it was pathetically lower. Only 44. 44! How could that be??? I almost cried on the phone with the nurse, but she was short with me and not helpful. I went to K's house and it was good to see her and to go to the RESOLVE support group, but I was distressed all night long. I cried and yelled at B several times on the phone (he was still out of town; he came home very late last night/early this morning).

After a much interrupted night of sleep, due to B coming in at 5 am, the cat's usual nonsense, and my inability to fall back asleep due to nerves, I couldn't take it anymore at 1 pm and finally emailed Dr. F. He reassured me by writing: "Thank you for your message.  I am sorry that the test result yesterday upset you so.  Yes, it was a bit lower than expected, based on your pattern of response not so long ago, but certainly there also are fluctuations and variations from cycle to cycle.  Please understand that the whole purpose of the day 4 estrogen level is to afford us an early opportunity to intervene and adjust where necessary to optimize your overall response to stimulation.  Needless to say, I will look forward to seeing what your visit reveals tomorrow, but I honestly believe that the likelihood of recommending a cycle cancellation tomorrow is very small.  I fully expect your estrogen level to rise significantly and will be quite surprised if it does not. 

I hope that this information is helpful to you.  I look forward to seeing the outcome of your visit tomorrow." [my emphasis added]

So I calmed down after that. I just keep repeating to myself, "the likelihood of recommending a cycle cancellation tomorrow is very small." That has to be my mantra if I am going to get any sleep tonight and not have a total stomach ache when I get up in the morning. Luckily, my appointment is at 7:30 am, so I don't have long to wait.

In other news, K's beta doubled! She is really pregnant! I am so happy and relieved for her. This IVF thing really does work for some people....

Ultrasound #1: Moving Ahead

This morning was my first ultrasound since starting the IVF meds. I've had five nights of the shots so far. I'm currently taking 225 units of Follistim, 75 of Menopur, and 5 units of Lupron. I was only on 150 of Follistim but that changed two nights ago, when my e levels were low on Tuesday's blood test.

Today went pretty well! My ultrasounds showed six decently sized follicles on the right ovary, and one on the left. That's the side I had the cyst and the endometriosis on, and I guess that ovary is still unhappy. Anyway, the six on the right side are pretty good, all ranging from 9-11 mm. There are two largest, 11 mm ones. Is it mm? I am not sure.

Dr. F says that I am not a great responder, although I am not doing poorly either. Overall he seemed quite pleased with where I am. After all, we only need one great egg (though I'd like to have more to freeze).

Right now, we're on track for only three to four more nights of stims, and a retrieval next Tuesday or Wednesday (today is Thursday). I am still waiting on my e level from the blood test this morning, but I'll probably not change my meds again. Most likely I will go back on Saturday morning and then we'll know more about a retrieval date, I think.

So, feeling relieved- I was nervous, as usual. I was so worried because of my e level being low last time. I hope it's risen- but most importantly, today I had decent follicles. And I'll only be on the drugs 8-9 days, instead of 12, which also pleases me.

More news later, when I hear back from the nurse about the estrogen level.

UPDATE: my estrogen jumped from 99 on Tuesday to 362 today! The nurse sounded very pleased. We go back in another two days, Saturday, for more blood work and another ultrasound. Feeling great!

Big Medication Mess-Up

We had a pretty rough time yesterday.

First, at work I learned that my estrogen levels were too low. We bumped up my dosage of the Follistim, and I had to re-fill my prescription. Another $508, thankyouverymuch. Thanks, estrogen that didn't rise the way it was supposed to.

Then, I went to the dentist to have a small cavity filled, and learned it's actually going to need a root canal. Wonderful. And I can't get it done for two more weeks. Luckily I am not in pain.

After work, we had trouble with the new Follistim dose. The pen let us dial up to 225 units, even though according to my math there should have only been enough medication for 150 units. This caused me to freak out. I ended up calling a pharmacist, who assured me that if the pen let us dial that much, it was available. It's so weird, but apparently the vials often have overflow. 75 units worth!?!?! The whole pen was only supposed to have 600 units, but it had 675!?!? Bizarre, and utterly mind-boggling. Each vial is $508, by the way. Fun times.

Anyway, once I was calmed down after the pharmacist's reassurance, I got in the car to go to the RESOLVE meeting. And, because nothing could be easy in my life yesterday, the Engine Malfunction light went on. Screw it. I drove to Cary anyway. I made it there, and home, with pouring down rain to boot. The car is going into the shop tomorrow. Sigh. But it's my sister's car so hopefully my dad will pay for the repairs.

And just when I thought it couldn't continue on this way, I watched someone else at the meeting do their Menopur, and something seemed... different. There was also a weird reaction when I was saying how big the needle was for me. At home, before bed, I consulted the instructions sheet. I learned that we've been doing the injections with the wrong needle! Instead of switching to a 1/2 inch needle, we've been using a 1 1/2 inch needle for the last four nights! No wonder it hurt so much!!! I was really, really upset- like all out, bawling. I'd been doing an intramuscular injection rather than a subcutaneous, and I was terrified that it might have messed up my cycle or my dosage. I was angry at the pharmacy for it's confusing packaging and lack of labelling, UNC for not having a real medication class ("just watch the videos"), myself for missing the instructions, and the nurse for the terribly written instructions. HANDWRITING a 1 1/2 so that it looked like   a 1/2 is really inexcusable.

Well, to finish this up, I talked to the nurse today and she just acted like I'm dumb, which infuriated me. This is REALLY complex for someone with no experience mixing and administering medications, and they really could have made this easier, for the THIRTEEN THOUSAND DOLLARS we're paying for this damn thing. You know?

Anyway, no harm is done, other than my very sore belly. For the next few nights, I've been told to let my tummy recover, and use the thigh for a while.

Tomorrow is my first ultrasound since starting the meds, and more bloodwork. I hope to have good news.

First Night of Shots

So we did the first night of shots, about an hour ago. It was not fun. The Lupron is just little diabetic needles and I find those easy, but these two new shots were a whole 'nother story. 

The Menopur has to be mixed- you have to combine two vials into one, and replace needles, and it all has to be sterile. The Follistim comes in a "pen" which has to be loaded and then "dialed" to the correct amount. The Follistim wasn't too scary but the Menopur had a HUGE needle! The needle hurt, and the liquid burned as it went in. It bled for several minutes afterwards, though just a little bit.

But I survived, and B is doing all the mixing and giving me the shots (except the Lupron, I can keep doing that one). Only 7-11 more nights!

Although none of this is fun, I am so relieved and grateful that we made it to this point. Last time around, when I had to have the surgery, was such a disappointment. I am full of hope that in 3-4 weeks, I could be pregnant.

Off to get ready to go out to dinner with friends now. Looking forward to the evening out.

Medications Class

Yesterday B and I met with the IVF Nurse to talk about injections, medication schedules, and overall IVF logistics. We left after over an hour, feeling very overwhelmed but ready.

My tentative schedule is as follows:

• Sunday, March 4th, 8 am: blood test for progesterone, to see if I have ovulated. If I have, we're ready to start. If not, we have to wait and re-test on March 11th.
• Monday, March 5th: begin nightly Lupron injections, sometime between 5-7 pm each evening.
• Continue Lupron for one to two weeks, till my period comes. Then, anytime that week, go in for bloodwork and baseline ultrasound, to be sure my ovaries are "quiet."
• Saturday, March 17th: continue Lupron, but also add Menopur and Follistim each evening, again 5-7 pm. That adds up to 3 shots a day. B begins doxycycline twice a day.
• Tuesday, March 20th, 7:30 am: go in for first estrogen blood test.
• Thursday, March 22nd, 7:30 am: begin daily blood tests and ultrasounds. Will be told if need to come in every morning or every other morning from now on.
• Continue shots and monitoring for 8-12 days total.
• Monday, March 26th: stop shots and give HCG trigger shot.
• Wednesday, March 28th: egg retrieval, rest that day.
• Saturday, March 31st: transfer day, begin progesterone (or maybe Monday, April 2nd if doing a 5 day transfer of just one embryo).
• Wednesday, March 11th: pregnancy test!

I know all of this is tentative and may fluctuate, and not everyone even makes it to retrieval, but I am excited and nervous to begin. May this next 6 weeks pass quickly and with few problems.

And It Begins

This is just a small subset of my meds: Progesterone for after the transfer, prenatal vitamins, doxycycline for both of us, needles and syringes, alcohol swabs, and a sharps disposal container. All of this was only $22 from my health insurance's specialty pharmacy. But don't worry, in case you thought that was all, I still have the $3000 worth of stims coming next week. Then my whole dining room table will be covered, not just half of it.