i've got bad plumbing

CD4: Outta drug money

2010-02-08T18:12:00.000-08:00

I knew it would happen, but not that it would happen so soon.

I've exhausted my IVF drug benefit. Holy crap. Somehow I've blown $25,000 worth of infertility drugs over the last 3 cycles plus the one that I'm currently in. Really? How can that be? I guess it works out when you figure what a single Gonal-F 900iu pen goes for.

But STILL!!!

So rather than this cycle's meds costing me about $450, it'll be $1050. I was within $1200 of maxing out the benefit but still needed 8 Gonal-F 900iu pens (valued at over $8000, according to the insurance company). They somehow figured that if a patient is within $1200 of their maximum benefit that the patient only needs to pay a portion (they said 30%?) of the remainder. Well somehow that 30% winds up being $791 to me. I don't know how they figure their math but 791 is NOT 30% of 8000. It still is a good deal for me, obviously, so I'm not griping, but I am shocked that this much money has been spent.

Now, by comparison, I've used $7900 of my $50,000 IVF benefit during the same time.

So $25,000 on drugs, and $7900 on 3 IVF cycles.

How can drugs cost 3 times more than the actual procedure?

It just doesn't make sense.

So on my call with the prescription drug carrier, they suggested I call my insurance company and ask if future drugs could be paid for through the major medical portion of my insurance company...that sometimes insurance companies will do this. It seems that I have a benefit for a procedure which requires medications, but no medication coverage. It's a conundrum.

My next call was my insurance company. I explained the situation to them and they said that they needed the "J codes" for my medications before they could tell me whether they'd be covered under major medical. It also might be that the drug money would come out of my remaining $43K benefit. OK. That works for me. I know that I can get meds for 4 cycles with $25,000 and that $7900 will do 3 IVF procedures. That's $33K total. I'm sure I could get 4 or 5 full cycles done for $43K. Maybe I need to negotiate a "frequent flyer" discount card with my RE? Buy 3 IVFs get one free?

I quickly fired off an email to the IVF clinic asking for the J Codes but it's after closing so I'll just have to call in the morning.

The craziness of IVF never seems to end.

------------------

Endnotes: J-Codes are for injectible meds only (not oral). Here are the J-Codes for infertility drugs (all are "Status F", whatever that means) or you could look here.

Gonal-F: S0126
Ganirelex acetate 250mg: S0132
hCG 10K iu: J0725 (Novarel, Ovidrel, Pregnyl, Profasi)
Menopur: J3590
Follistim: J3590
Lupron: J1950

CD3: Bring on the Gonal-F

2010-02-07T16:25:00.000-08:00

It's a typical cycle, although not the same one I did last cycle. 5 days of femara, added in Gonal-F, ending with ganirelex...and a trigger. Tonight's the first night of Gonal-F - I'm doing 450iu this time whereas last cycle (which was dismal) we did 600iu. There's a axiom that "less is more" when it comes to IVF. Hitting your ovaries with big guns of gonadotropins can, and often does, shut them down. So we're back to 450iu, which is what I did with my first IVF back 4 or 5 years ago. (God, it's been that long?)

I was doing a bit of reading last night about when to start lovenox. It's not a huge deal if you start it earlier than you should, but starting it later means that you might form micro clots in your endometrium that can cause failure of the embryo to implant or thrive. I was also reading that lovenox, taken early, can help calm the immune system for folks like me whose immune systems run amuk with elevated APAs. So rather than wait til my stim day 2 (which would be Monday night), I started mine last night (Saturday). A few days earlier can't hurt, and might actually help.

So I finally buckled down and ordered my meds today, due to arrive on Tuesday. I've got plenty of back up drugs to get me til then...actually enough for the entire first week, but one can really never have enough Gonal-F is my thinking.

One thing that is sorta worrying me about this cycle is my lining. I started to bleed, quite a bit, about a week before my last BCP. So the day after my last BCP I let the clinic know that my period had started. I went in the next day for my baseline. This was Friday, two days ago. But despite having bled for a week solid, my lining was still at 11mm. THICK as all hell. Some women would slice off their little pinky for an 11mm lining. But that night the doc started me on my Femara. Since Friday, I haven't bled much more so that lining is probably still up in there. I'm starting stims tonight, first shots in half an hour. So once we start the Gonal-F, my lining isn't going anywhere. I'm worried about putting embryos into a lining that's been hanging around for a good month and a half (I was on BCPs since late December for this cycle).

Anyone know if I should be concerned about this lining situation? The doctor didn't seem concerned and I'm not seeing him again until next Friday. I'm going to fire off an email to him to ask...but if you guys have any ideas, please pipe in.

Peace out.

CD 2: Owwwww

2010-02-05T15:08:00.000-08:00

I went to the clinic today for my baseline U/S and bloodwork. I had a thirty-something millimeter sized ovarian cyst on the left side. We already knew I had a cyst there, but it had grown since the last ultrasound.

So he tried to aspirate me on the table. No anesthesia. But it was just too painful to have forceps, an ultrasound wand, and the needle holder all crammed in there. I was recoiling in pain. He said that he felt we should do this under anesthesia. Yep. I quickly agreed ("Just get that stuff out of me already"). So I went and busied myself for 2 hours while the anesthesiologist showed up for the day's retrievals.

It was a fast procedure but I feel a bit torn up down there. I have clear vaginal tears, both inside and out. They burn. Owww. My skin is thinner down there with age, so tearing happens more often, but this just smarts.

So I'm riding the couch tonight. Got a few movies on the DVR and I'll just drink my nettle tea and cozy down with the cats. I start taking femara today (5mg/night) and on Sunday the Gonal-F starts. Following Friday I do an intralipid infusion after my first monitoring ultrasound and then we inch closer toward retrieval.

But the good news I've saved for last.

The results of my baseline U/S showed 9 antral follicles. 4 on the left (where the cyst was) and 5 on my crappy right ovary that had all the endometrioas (that were removed by needle aspiration/sclerotherapy in December).

9 is amazing for someone my age (45). I think he might have been looking at the same ovary twice though: my ovaries tend to get stuck next to each other behind my uterus. It wouldn't be the first time someone did this.

But even if there are only 4 or 5, it's still not that bad.

My vote's for the 9 though. :-)

CD1: Welcome AF

2010-02-04T11:18:00.000-08:00

Took my last BCP yesterday. I'm supposed to call them when AF comes, but she's been here since last Saturday or Sunday...so that makes today CD1 by my reckoning. (U/S and bloodwork scheduled for tomorrow. Yippee.)

I have an 11-13mm cyst on my left ovary that will need to be aspirated before I start meds. Otherwise we saw 3 follicles on the left. Dr. T said that he saw "maybe" 3 on the right, but I've seen enough ultrasounds to know that they weren't follicles....just his wishful thinking to keep me from throwing in the towel. More reasonably, I think that they might have been remnants of the small endometriomas that he drained in December. They certainly weren't follicles.

I think it's time to call Dr. Persian on the west coast to schedule a lap. I have a hunch that this cycle isn't going anywhere. I haven't even ordered my meds yet, if you can imagine. I'm not being reckless here....I have enough Gonal-F and Ganirelex to get through half the cycle, I just need femara to get started and that is easily available in any pharmacy worth it's salt.

Dr. T advised against a lap, but my right ovary is toast. It's just dead. Nothing's happening there. I had 4 follicles on that ovary month after month until recently....and the last two months, nothing. So what damage is a lap to look at it going to do at this point?

Probably very little.

So here we are, February 3rd. I have $50K in IVF coverage, $25K in infertility meds. I've used up only $7K of the IVF coverage over two cycles (amazingly) and my insurance runs out the last day of July. I don't see that I'll be able to use all of my coverage. I am currently interviewing at a company that has $20K in IVF benefits and no cap on medications. They're listed on the 50 top companies to work for in Conceive Magazine. Fingers crossed that there aren't age limitations for IVF with them and that, after I turn 46 (the cap that most clinics have) I can switch to this new clinic that I discovered where a woman got pregnant with her own eggs at the ripe old age of 49. It's a world record so that should tell you the clinic if you Google it. I'll just refer to him at Dr. Amazing to keep things straight. ;-)

So there's not much hope for my right ovary, but there IS hope that I can keep on trying.

Now, off to call Dr. Persian and get that ball rolling.

Poignant Paragraph

2009-12-19T11:26:00.001-08:00

I picked up a copy of the Winter 2009 Resolve publication for the North East Region. Usually these pamphlets speak on a really top level, noobie level. I don't tend to find much that resonates for me anymore in these materials. I kind of feel like I've "read it all". But, surprisingly, a particular article jumped out at me, "Pregnancy Between Infertility Friends", by Anne F. Malave, PhD, p. 6.

This one paragraph really grabbed me on an emotional level (I hope they don't mind my including a paragraph here):

"The experience of infertility plunges people into contact with the outermost reaches of their humanity. Infertility is a profound crisis that threatens identity, relationships, and continuity. It threatens one's sense of the world, it disturbs beliefs and assumptions, and it belies safety and security. It is an emergency that uses up coping skills, and depletes resources; people start to run on empty as their chronic stress levels move into the area of trauma. Infertility can shut people down emotionally, it necessarily limits and narrows; people are functioning in "emergency mode", a black and white vantage point that oversimplifies for the purpose of survival. This is not the best place to understand the complexities of human interactions, or the perspective of the "other": this is a time to survive, and everything else may feel inessential, a luxury."

I don't think that there is any more clear way of expressing how infertility has made me feel. My beliefs and assumptions about getting pregnant, of being a mother, have been ripped to shreds. There have been times in cycles that NOTHING ELSE MATTERS. My eye is so "on the ball" that I turn totally inward, tunneling into doing everything to cycle.

That article expresses my innards so well. I can't read it without tears.

Aftermath

2009-12-14T11:05:00.000-08:00

I'm still not quite right from an emotional standpoint after this cycle. I vacillate between feeling numb, angry, and extremely sad. It took so much out of me to do this cycle. I was on freaking BCPs for 5 weeks before this cycle...I could have cycled within a cycle for how long it took to get to this cycle. And now I have to wait 4 to 6 weeks to heal from my sclerotherapy before I can go onto another cycle? I spend more time waiting than anything else. I just hope that the sclerotherapy took. I'm still having pain in the right ovary, the one that had the three endometriomas. Maybe it's residual pain from the procedure. I'm going to ask for a follow up U/S at 2 weeks post sclero to verify that the cysts are gone. I'm on deproprovera tabs for two weeks so that my AF will come on time. My ovaries should be nice and quiet the next two weeks. If they're not, I'll know that something's amiss.

I emailed Dr. Italian after my dismal retrieval...I asked if we could please test my hCG levels to see if it the levels that remained would be considered normal for how many hours I was past trigger. I just can't understand why this cycle didn't work. At all. The geek scientist in me wants, NEEDS, to know WHY. I want closure.

So I went to the clinic at 11AM today, precisely 3.5 days after trigger and had them draw my blood. There's a normal range for how much hCG is left in your body after trigger given the known half-life of hCG. This excellent article, "Bioavailability of hCG after intramuscular or subcutaneous injection in obese and non-obese women" demonstrates the declining normal ranges over time.

I had my blood drawn at precisely 84 hours after trigger (3.5 days). The value, if normal, should have been around 100. It was 110.

So the quality of the hCG was fine. The injection site (my upper arm) was fine. What I am thinking at this point (and a number of you readers have echoed this point) is that I triggered way too early.

My lead follicle was 18mm the day before I triggered. It should probably have been more like 22mm, which would have given the stragglers more time to catch up. I guess my question now is why he didn't have me take couple days of of Gonal-F and ganirelex and then come in for another U/S?

Grrrr.

At least it makes sense now. I know what to be angry about and that helps tremendously.

Crash and BurnWith Added Paranormal Kids Flava?

2009-12-12T12:33:00.000-08:00

Retrieval was today.

4 follicles. 1 immature follicle retrieved.

I have nothing. NOTHING! Nothing to fertilize.

How can this be? I had a 18mm follicle two days ago. There is nothing about that follicle that could remotely be considered "immature".

How could this cycle have gone so wrong? I just don't understand it. The only things that were different were that I took resveratrol/pycnogenol and I took my HCG trigger in the arm (rather than the hip).

That the largest follicle wasn't mature (and three didn't detach from the follicle wall) tells me that there must have been something wrong with the HCG trigger. What else could it be?

Anyone know what sorts of things cause follicles to just not mature?

I'm having a very hard time emotionally with this failure. The last one was bad...but to have nothing is just heartbreaking. At least with my first failures, I had my ex to lean on. A shoulder to cry on.

This time 'round, I'm on my own, despite that I have an uninvolved partner who doesn't want further children beyond the three he already has. Hence, the DS. He's being terribly detached, hasn't checked in on me once to see if I am OK physically or emotionally. Not once. He didn't even ask how it went when he picked me up from the clinic. I'm stunned. Shocked. Hurt.

I can't express how utterly alone I feel right now. I'm going to become dehydrated if I don't stop crying soon.

On the bright side (AS IF there could be one today), the sclerotherapy on my ovaries was a successful procedure. So the anesthesia went to a good use. Dr. Italian removed 3 endometriomas on my right ovary and 1 on my left. He said that the one on my left gave him a bit of trouble and that he had to "break it up" to get it out. Ick, ick, ick. I don't even want to know what that truly means in terms of process.

I've been put on best rest for the rest of the day as my empty endometriomas were pumped full of a tetracycline solution and they'll slowly absorb over the next few days. I'm not to be "jostled" by the kids...so no jumping on me, crashing into me, etc. No small feat for these guys to be THAT well behaved. Seriously.

Dr. Italian wrote me a Rx for DepoProvera tablets that I'll take orally for 14 days then my period will start like clockwork the day after Christmas or the day after that. When that happens we'll do a follicle check on CD3, E2 test, and we'll see if things look good enough to start cycle #6.

I asked him about doing an "agonist antagonist conversion protocol" next cycle and he said that we could do it. I'd need to get a progesterone test on CD21 and if it was high enough I'd start lupron.

Scary thing is that I will probably be in Zurich, Switzerland at that time...so how the hell I'll get a progesterone test done remotely, and in a foreign country, is utterly beyond me. I'm sure I can get a test done, it's just that hopefully the test results are in English and in units that Dr. Italian can convert from.

But back to today...and what happened after we left the clinic.

After he picked me up from the clinic we drove back home across the river and headed out for brunch. My treat since he had to sit in wretched traffic in the tunnel to get to me. I explained to the kids the rule about not crashing into me. Out of the blue, the older kid said aloud, "She had an operation and she's never going to have a baby. She can't have any children EVER!!!" (Paraphrasing). He kept going on and on about how I would never have children. Mind you, he's 5. I'd have backslaped him if he was a teenager. I turned to his father, holding back tears as best I could, and asked, "Did you guys have a conversation about this before you came to get me or what?" and he said "NO!". Talk about hitting me with the lowest blow I could have ever had. Ouch. And where the hell did he get such an idea? They have no idea I am trying to get pregnant whatsoever. It's just not talked about at all when they are around. Their dad finally told the older boy to "shut up", sensing that it had me on the verge of total freakout. What the hell got into him, I have no idea.

Even weirder. The little one (also a boy), who is four and I am completely bonded to, wants to be a girl when he "grows up" (because, in his words, "girls are nice"). He has this alter ego named "Sophie" that he likes to assume. He'll put my curtain drawback cords on his head, for hair, (they're silky rope with long silky tassels) and then morph into Sophie. What's sorta strange is that Sophie is the name I'd give to my daughter if I ever had one (actually Sophia, but Sophie for short). I was almost named Sophie by my mother so it has a soft spot in my heart. I told him one day, "If I ever had a little girl, I'd name her Sophie, too!" Then, just last night, at dinner, he turned to me, out of the blue, and said very matter of factly, "Maybe you'll get to be Sophie's mother."

Eerie.

What's with these kids?

Back to my box of kleenex. :-(

Trigger Day

2009-12-10T19:12:00.000-08:00

Yesterday's E2 = 750

Wow, nearly doubled. Lab error or what? Hmm...

There are four follicles. One's ready to go at 18, the other three are all under 15. I forget the values but there's a chance that two MIGHT be big enough at trigger. I sorta doubt the 4th will make it at all.

So 1 for sure. Maybe 2 or 3 if we're lucky. And if we get 4, I'm heading out to buy a lottery ticket.

I had to take the S/O's two kids (4 and 5) to the appointment. Ugh. They behaved horribly...huge mistake. I felt bad for everyone. Whereas the nurses had previously said it was OK to bring them and that they'd watch them while I had my U/S, at some point it was clear that the offer had been revoked and that I'd have to bring them into my exam.

The kids have known me since the day they were born, they walk in on me while I'm going to the bathroom or bathing. They've seen me naked. But having them in there while the blessed dildo cam is out and about was unnerving. Luckily they were positioned behind me in such a way that they could only see the U/S screen. Whew.

All I know is that I'll never do that again. Ever.

Triggering tonight at 11pm with 10,000iu of HCG in the shoulder (oww!!). WTF is up with the shoulder? They said that they've found it absorbs better in the shoulder. Really? Wow.

Sorta feels like a bit of a waste to be moving forward considering how bad it all is, but there's so little time left. Canceling a cycle now, no matter how bad almost feels sacrilegious.

Stim Day 8

2009-12-08T06:30:00.001-08:00

Just got yesterday's lab tests:

Prolactin: 11.4 (down from 14 in October)
E2: 397

I don't remember how to calculate E2. This seems low to me though. :(

Did one shot of ganirelex last night and another this AM per instructions. Still feeling laden with my swelling ovaries, but less so than yesterday.

I so bet I am losing my follicles again.

I'm back at the clinic tomorrow for monitoring U/S #2. I have to take the boyfriend's kids with me this time as they were little terrors at his office yesterday. I hope that the other patients don't hate me for bringing them in.

Stim Day 7Cycle Going Bad

2009-12-07T19:56:00.001-08:00

Today was my first monitoring U/S with Dr. Italian. The results were dismal.

One large 18mm follicle on the left side, two or three smaller (12mm, 9mm, etc). And NOTHING on the right side save for a few endometriomas.

It's bad. Real bad. It's my fucking age and it's also the endometriomas. But it might also be that I'm on 600iu of Gonal-F which is more than I've ever been on so I might be overstimmed. I get my E2 & prolactin results tomorrow. If we're over 3000 on the E2 then we KNOW that I'm overstimmed. Prolactin was at 14 before I started stims. It'll be interesting to see where it is now. I've got an old bottle of bromocriptine in the armoire that I can pull out if necessary.

So he said that I don't really have time to be choosy about cycles at my age (45) and that we should proceed with the cycle. I agree. If it weren't for the fact that I'm doing a sclerotherapy on my ovary during this retrieval, I'd cancel this cycle and try again in January. But doing the sclerotherapy means that I wouldn't have there wouldn't be enough time for my ovaries to heal between now and the January cohort anyways. I'd be looking at a February cycle date. So it's February for the next cycle no matter how we slice it. No pun intended.

So I'm reluctantly moving forward.

I don't expect a damned thing to be retrieved at this rate but what else can I do at this point?

Next time I'll reduce Gonal-F to 450iu on my own as I know that in my case, "less is more". I hate having to self-medicate but it really pisses me off when our RE's don't listen to us. After 5 actual IVF cycles, and many "tries" (ie, cancelled cycles) I KNOW better than any doctor how I am going to respond to the meds. I'll also be asking for hGH.

Last cycle I lost ALL of the follicles on my right ovary when I started taking the ganirelex. I wouldn't be surprised if it happens again and I lose them all this time.

All I know is that I want to pour myself a huge glass of red wine tonight and chalk it up to a failed cycle. It makes me so sad that a few years ago I was churning out 10 and 15 follicles/eggs a cycle.

Now THIS?

Fuck!!!!!

Stim Day 6

2009-12-06T10:27:00.000-08:00

I read a few sources online that say that taking resveratrol and anticoagulants (NSAIDs and maybe things like lovenox, arixtra, etc) can increase the chance for bleeding.

I believe it.

I'm taking 250mg a day of reservatrol and 40mg of lovenox, and unlike previous cycles, I am bruising more than usual.

Tomorrow is my first monitoring ultrasound. I'm quite curious to see how large my follicles are.

Stim Day 5Feeling the Pain

2009-12-05T18:58:00.001-08:00

Today's stim day 5 and my ovaries are aching and feeling laden. I'm still not convinced that 600iu of gonal-f a day is going to have me ready to trigger when I go in for my first monitoring u/s on Monday afternoon. I told the doc that 600iu was a lot for me and he didn't seem concerned at all. He ordered me 5 syringes of 250mg ganirelex, which I'm supposed to take at some point to keep from ovulating, but I suspect that I'll get in one shot on Monday evening and MAYBE, just MAYBE, a second shot on Tuesday.

My money is on my being ready to trigger on Monday and retrieving on Wednesday.

We're proceeding with the sclerotherapy on the endometriomas on my right ovary immediately after retrieval. They'll be taking two 250mg sterile vials of pure powdered tetracycline and rehydrating them with sterile saline (or other) ... they'll drain the blood from my endometriomas, refill with tetracycline solution, and then redrain near completely. Hopefully they'll heal while I'm in my 2ww and the two weeks following that.

I'm feeling terribly bloated and tender and I'm already looking forward to retrieval. It's hard doing two IVFs in rapid succession. I didn't get a chance to lose the weight from the last cycle and I'm just so incredibly uncomfortable. Also making me feel a bit icky is that yesterday I did an intralipid infusion at my hematologist's office which pumped 200ml of intralipids and 500ml of saline into me. Hmmm...no wonder I'm feeling a bit, plump?

Birthday Eve

2009-11-28T16:59:00.000-08:00

AF is taking her time showing up in full force and I am quite happy about this. I was worried that Dr. Italian was going to be doing my baseline way too early and he was right: there's enough hormone in my body to trick things for a while.

Today's my last day at 44 - it's sort of an ominous birthday as many clinics will only let you cycle up til your 46th birthday. So I see it as my last year of trying for a child unless I find a clinic that will let me try with my own eggs.

I'm feeling fabulous after my iron infusions - I can't remember the last time I had so much energy, but this is great. If this doesn't help me get knocked up I'm not sure what will!

Ironies and Iron Levels

2009-11-27T20:38:00.000-08:00

So I've been on BCPs since my last hysteroscopy, roughly five weeks according to my pill packs. I've bled the entire time without cease...and yesterday was my last BCP. Ironically, I stopped bleeding on the last day of my BCPs...and now I can look forward to....more bleeding as my AF starts.

Oy.

On iron levels, my ferritin values came back today.

461

When the doctor emailed me my values, I did a doubletake when I saw the number. 461? Or 46.1 and he forgot the decimal point. I emailed him and asked for clarification.

Nope. 461. High but not dangerously so and my values would fall over time as the Fe+ in the ferritin converted to hemoglobin in my RBCs. He cautioned that I shouldn't be taking any oral iron supplements. Yikes. I took 65mg of elemental iron each of the last two days, sort of panicked that my levels might be high enough! And 50mg for a few days prior to that.

Wow, I started off at 14. This was a huge spike!

So my irons levels are completely topped up. My last hemoglobin (or was it my hematocrit) was at 36.5 or so, just under the normal mark. With luck, I'll surpass 40 with my next blood test. :-) I am feeling quite perky with high energy levels. I've also noticed that my skin looks rosier, tauter. The bags under my eyes are a wee bit lighter but the upper eyelid skin is remarkably better (it was quite thin and crepey just a few weeks ago). I haven't changed my skincare regime but I have been taking shitloads of pycnogenol and resveratrol since early to mid September. Maybe these antioxidants are finally paying off in ways I hadn't expected? Or maybe the increased iron is helping to get more oxygen to my tissues? Who knows. I just look and feel better.

Well, save for the 10 pounds that slid on in the last month or two due to cycle #4's steroids and gonatropins, then 5 weeks of BCPs. And now I'm just about to start more stims and steroids. God. I hope I can get at least a few pounds off before the end of the year.

Key to the next week:

Yesterday: Last BCP
Tomorrow (Sat): Meds arrive
Sunday: I turn 45. F*ck. My last year of IVF begins.
Monday: Baseline U/S and Bloodwork. Start Stims.
Tuesday-Friday: In California
Friday: Intralipid Infusion

I have no idea when my first monitoring U/S is...oy! Don't you just love cycling by the seat of your pants?

Some Preliminary Bloodwork

2009-11-23T15:54:00.000-08:00

Went to see my hematologist today. They took some blood and ran a CBC today and sent out for the ferritin results.

My hematocrit was about 31 before the iron IVs, today it was at 36.6%. Still under the mark. Normal range is 37.7 - 53.7. So I'm still low.

He also did a reticulocyte count which he said indicates how many "baby red blood cells" my body has produced. They can extrapolate from there what my numbers might be.

I asked if I should take orals to supplement and he said it would cause GI problems. I think that he's inclined to give me more IVs should I need them. Good. I'm happy to do them.

Ferritin numbers will be on Wednesday as will my ESR.

"..ferritin [should be] above 70, with an ESR of less than 10mm/hr. If the ESR is above 10 then the ferritin should be above 140." (Source: email correspondence UK hematologist).

Interestingly, a good friend of mine who is also experiencing years of infertility wrote to me today and told me that her ferritin is at 9. NINE. She's having many of the same symptoms as I but she's gotten pregnant a few times, only to lose them in miscarriage each time. She's making an appointment to see a hematologist at Stanford as soon as possible to see if she can get iron infusions done ASAP.

Iron Infusion #5The Day After

2009-11-22T12:03:00.000-08:00

Finished my sequence of 5 iron infusions yesterday. I didn't get the V-Man for my IV but a nice nurse - she rocked - she placed my IV with less pain than a typical blood draw. An hour and a half later I was done.

I haven't really noticed any side effects - maybe a bit of headache, a tiny bit of agitation/edginess. I haven't noticed a huge surge in energy, yet, but I also notice that I don't feel the need to take a nap today. Or yesterday. So my energy must be on the rise.

I finally located one of the authors of the "Ferritin and Infertility" paper that was published in Lancet in 1991. I wrote to him yesterday and he got back to me immediately with a copy of the original article (a 2 pager, actually) plus three other articles. I spent a few hours reading and absorbing all that I could.

Essentially, there were 7 women in his study (n=113) where they were evaluating women with scalp hair shedding who had beginning ferritin levels that ranged from 14 to 40. Ages from 32 to 42. All were put on iron supplements (35mg oral, daily) and vitamin C (200mg) and within 28 weeks (roughly 7 months) their ranges had increased to 36-76 and all were pregnant. 3 of these women already knew that they were infertile and the other 4 were merely having unprotected sex before but didn't get pregnant naturally. While 7 out of 113 doesn't jump out and grab you, their beginning and ending ferritin values and the fact that they got pregnant DOES!

So there is a clear connection between ferritin and infertility. One of the authors wrote that they weren't sure if iron functioned in ovulation or implantation. I would reckon that implantation is the issue as plenty of women are able to undergo IVF and produce large numbers of oocytes and high grade embryos without issue, in spite of their low ferritin values. This much I've been able to see in posts on many different IVF boards. I will stab in the dark and say that I would bet that repeated implantation failure is highly correlated to low ferritin values. I would love to see data on this. I also noticed a mention that immunological issues might also be linked to low ferritin values. A study to look at reproductive immunological issues and iron values would be valuable to the infertility world. Hopefully one will be forthcoming.

Iron Infusion #4

2009-11-20T09:58:00.000-08:00

Fourth iron infusion today. Nothing remarkable happened...just a bit of burning in my right hand where the iron was being dripped into. I'm not feeling hugely energetic or anything. I wonder how long it will be until I can feel some of the side effects of the iron infusion?

I'm still bleeding quite a bit from the BCPs - that hasn't let up and it seems to be getting heavier. I had a call with the RN from my new clinic yesterday to go over my cycle. She said for me to call her when my period starts once I stop taking BCPs on the 27th. I said, "I've been bleeding non stop for 5 weeks. How on earth am I going to know when my period arrives?!" She just didn't get it. So here's the schedule so far:

11-26 take last bcp
11-30 baseline u/s and bloodwork. start meds if all systems go. sperm is supposed to arrive today but I am going to defer delivery until 12-1 just in case the cycle is cancelled.
12-3 intralipid infusion
12-9 or 12-10 probable trigger
12-11 or 12/12 probably retrieval (add in sclerotherapy if I plan on freezing it all
5 day transfer OR freeze it all

I just wrote to Dr. Italian to find out why they are delaying my baseline til CD4. I think that it's an excessively large amount of time to wait and want to make sure that they realize how they're scheduling things. I don't have huge amounts of confidence in the RN I chatted with...another cycle of managing the managers I guess?

Iron Infusion #2

2009-11-18T10:03:00.000-08:00

Today was the 2nd in a series of 5 intravenous iron infusions. They didn't place a port but are instead moving the IV around each day. Today's was in my left hand between my thumb and wrist. It's a nasty area to place an IV but we've got to make use of my veins as we can.

Yesterday I had a weird taste in my mouth while the infusion happened, but no pain. Today, no weird taste, but the IV area burned like hell. They had to slow down the drip, reposition me, and then after 30 minutes they turned it back up without issue.

No leg cramps or other weird symptoms that I've read in other blog posts. Guess I'm lucky so far. Knock on wood.

I asked the V-Man if it was safe to infuse 200mg a day for 5 days in a row and he said that the doctor is up on latest uses of Venofer and that he was sure it was fine. So I'll stop worrying and just complete the treatment.

Two down, three to go.

Iron Infusion #1

2009-11-17T11:58:00.000-08:00

Today was my first iron infusion to get my ferritin levels back up to normal. I drove about 11 minutes to my hematologist's infusion center - I've been here before when I was here for an IVIG infusion. Lots of little old ladies undergoing chemotherapy - some are bitter, some are dealing with it ok. It's a mixed bag. It's just sad for me to see them in their lazyboy chairs with those fluorescent yellow bags dripping into their arms.

There's a male nurse (we'll call him V-Man) who places our IVs and mixes our individual bags of drugs. My bag was about 250ml of dark brown stuff and took about 2 hours to infuse. Very unappetizing. V-Man takes it all in stride and is really quite nice to have around. He said that they'll do a daily infusion each day from now until Saturday and that my doctor's protocol is aggressive and that they'll test my blood on Monday to see where I'm at. I might need a few more bags, but hopefully not. Each bag contains 200mg of iron (venofer brand), so 1g total at the end of the sequence.

After about 4 weeks, all of the Fe+ should combine with apoferritin to form ferritin and this will in turn help my body to create more hemoglobin as it's needed. My hematocrit is at 31, probably lower since I've been bleeding constantly for the last month while I've been on the BCPs (continual "break through bleeding" is what it is). I wish I knew more about the process but I'm reading up on it. I'm looking forward to increased energy levels and, from what I read, I should be seeing my hair grow back in due time. There are some negative side effects: bone cramping, headaches, etc, but they are short lived. The long term effects seem to totally outweigh the negative effects. Fingers crossed. More tomorrow

Low Ferritin Levels and InfertilityCould this be the hidden key to my problem conceiving?

2009-11-14T11:40:00.000-08:00

I had a wild hair to follow up on a bunch of blood tests that were done by the hematologist who did my IVIG infusion. This was about a month ago - precisely the day prior to my embryo transfer. So on Friday I made the trip to his office to see if anything interesting turned up.

It did. And how.

It seems that even though I am just slightly anemic (hematocrit is about 31 or 32, I forget the precise number) my ferritin levels are at 14, which is VERY low.

The doctor asked if I bled a lot with menstruation (I do) or if I had a compulsion to eat ice or other odd things (condition: pica) to which I said "no". He asked if I'd tried iron supplements and I told him that I had and didn't like to take them because of the issue that it causes with my bowels moving slowly (that is to put it politely). He suggested that I do intravenous iron infusions - 5 treatments, each of 200mg, that would restore my iron levels rather immediately.

He said that if I was feeling tired or without energy that it would help me tremendously. I said I definitely wanted to do the treatments and signed up with the front desk to do a benefits check (I'm sure it's covered as they covered my IVIG infusion fee).

So upon arriving home, I check with Dr. Google on the ferritin issue to see if it causes problems with infertility and lo and behold....it does.

Apparently there was an anecdotal study done (think it was published in Lancet) where a number of women with low ferritin and infertilty were given iron in one form or another. A large number of them became pregnant within a short period of time (some sources say one month, others say 28 weeks). I hate to give anything too specific as I cannot find the original study - if I do I'll edit this post and include it and/or a link to it.

I am not hugely knowledgeable about the pathway of iron, ferritin, and hemoglobin - it's been way too many years, but apparently the iron that is transfused is converted in the body into a form that can be taken up by ferriton (storage) and hemoglobin (on RBCs). It takes anywhere from 2 to 4 weeks for the conversion from iron to ferritin/hemoglobin to become complete. So it's quite crucial that I do an infusion as soon as I possibly can in order to be prepared for the IVF cycle that I am just about to embark upon.

While the girl at the front desk said she'd do a benefits check on me and get back to me by Wednesday, I think I will take the risk and infuse on Monday so that I am one step closer to being in good shape for my IVF cycle.

I am stunned that something this huge has eluded my doctors and me. I've been borderline anemic all of my life and no one ever did a blood test to figure out WHY until now. We still don't know the cause of the low ferritin but there are three main reasons for that: heavy menses or internal bleeding; poor diet; or, celiac/Chron's disease.

I've had intestinal biopsies for celiac spruae years ago and that turned up negative...

While I don't eat much meat, I do eat a very varied (mostly organic) diet, take vitamins supplements, etc. I would say my diet is pretty darned good when compared to many. Maybe I'm still lacking? I guess I need to really pay attention and make some changes just in case.

I do have very heavy periods - so maybe this is it? I also donated blood a lot years ago....never thought it would cause harm but apparently you can deplete your iron reserves (ferritin) and then it winds up showing up in you hematocrit or hemoglobin numbers (resulting in anemia). So you can deplete your reserves of (in your ferritin) but still show a quasi-normal hematocrit/hemoglobin. That's why my numbers slipped by for god knows how many years.

So I am going to get my iron infusion on Monday with all due haste. No matter what it takes. I can't believe that something so common as iron could be the reason for my infertility.

It gives me a strange sense of hope that maybe I have a chance of effecting a change that can turn the tables at last.

What was he thinking?

2009-11-10T15:07:00.000-08:00

This is one of those posts that I'm going to be a bit cryptic in.

So I am on this IF forum...which is ran by a rather famous clinic, that has offices in maybe 7 major areas in the US. Each clinic has its own forum which is moderated by a RE that works in that office.

One of the doctors, at one of these clinics, often pushes his book at the infertility patients on this forum. So I ordered it today, because he said it would tell me what sorts of vitamins I should be eating as an infertility patient. Well, today it finally arrived. Imagine my shock and unhappiness as I opened the book only to see page after page of recommendations for women who are already pregnant. No, seriously, the ENTIRE BOOK is for pregnant women, not IF patients. Nothing for us at all. My heart sunk. What was he thinking?

Mind you, most of these patients are infertility patients who have gone through a great deal of heartache, loss, failures, you name it. You don't dare mention you are pregnant without a caveat in your post title.

I felt that this doctor was rather insensitive to push this book at patients who are in the throes of attempting pregnancy. The title:P*rf*ct H@rm@ne B@l@nc# f0r Pr@gn@ncy made me think that it was for women who are TRYING to get pregnant. NOT for those that are already pregnant.

And actually, the reason I wanted this book is that as an immune patient I have a need for extra vitamins, specifically calcium, vitamin D, fish oils, etc. I was hoping to get updated insights on how much I should be taking to get maximum benefits. Unfortunately, he wrote a single PARAGRAPH on immune issues and all he spoke of were -Rh issues. OMFG. Rh issues are genetically passed...immune issues can be but often are not. I felt that the subject of Rh issues shouldn't even be here but in another category entirely. What can I say?

I went and visited the forum today and tried very politely to let the doctor know that I was a bit upset over the type of book that wound up arriving today. I asked him to please warn patients of the subject matter of the book.

Come on, would you tell an infertility patient who has experienced recurrent failure or loss to go out and buy "What to expect when you're expecting"? You wouldn't. It would be considered callous and insensitive.

I know I'm being a bit sensitive about this, but I felt that he was so very wrong to have pushed such a book on the forum without warning.

I know just what to do though. When I go to see my IF doctor, this week or next, I'll offer to donate it to the office's waiting room. If they say it wouldn't be appropriate (and we know it's not) I'll let them know that the doctor that wrote it, who works in a sister clinic, is promoting it on his clinic's forum (which is so closely tied to the other clinics that it's hard to separate them out). Maybe that is the easiest way to let them know of its inappropriateness without beating them over the head with it. Seriously, I won't be reading it. There's nothing in it for me. Not a blessed thing.

What do you think about this? Any thoughts?

Forgetting CDs

2009-11-06T17:54:00.000-08:00

Let's just skip what cycle day I'm on. I'm on BCPs, downregulating, so CDs are sort of a thing that doesn't really apply right now.

I'm supposed to hear from the clinic on Monday whether we'll be doing the sclerotherapy on my right ovary next week. I hope so. I want this to be done with so I can put my eye on the ball of another IVF cycle.

I feel so impatient, like a horse waiting to take off at a race. It's like that, waiting for an IVF cycle to begin. It always feels like time drags so slowly and that it takes forever for everything to fall into place, for the doctor to finally give the go ahead to start stims. I so hate this feeling. This waiting. It's like nothing else matters...time just needs to move faster so that I'm trying again. When I get into this frame of mind, I realize that I am too invested in this...everything else pales in my life. I get hyperfocused.

I dislike that.

I want to be able to go about my life without dwelling on the next cycle, when it starts, what it looks like, and how I get to it.

I think I am probably horrible to live with when I am this hyperfocused. Arrgh.

CD6Day After Surgery: Ranting About The East Coast

2009-10-30T12:48:00.000-07:00

The doc wasn't able to do the sclerotherapy procedure on my right ovary as they weren't able to get the medication that they use in time. Apparently, the compounding pharmacy in St. Louis that packages the medication that I needed failed to renew their NY state licensing in time and so they're out of commission for another week to week and a half. Ugh.

All it is is pure tetracycline in a sterile vial - my doc would reconstitute it with sterile saline and use this to flush out my ovary once the blood had been aspirated away.

Amazing that there seems to only be ONE pharmacy in the entire blessed country that can do this. Ya know? I bet there are other pharmacies that can do this. Really. It's got to be an east coast madness thing. More on this later.

So they weren't able to do this procedure.

Upon waking up, the doctor said that they also didn't aspirate the cyst on my left ovary as it had already popped.

So, the last RE clinic (Columbia) had essentially postponed my cycle for NOTHING. NOTHING! I could have easily cycled right away. Damn!!! I have loved the doctors there and they have a top notch embryology lab, but it's just frustrating that they have a cookie cutter approach to IVF. Even my cycle was cookie cutter, using ganirelex on me when I am nearly 45. Ugh.

So he did the hysteroscopy, the only thing he COULD do considering the circumstances. He found some flimsy sorts of adhesions in my uterus, which he removed. I had some good cramping afterward and have bee spotting since then.

Bummer that I have to do another procedure the week of November 9th because of the pharmacy. That just bites.

So I am going to be doing cycle #5 in December unless I am able to get them to cycle me out of the December cohort. I am going to beg for that. Hopefully they'll relent and let me proceed earlier, but they do close for holidays so they wouldn't be able to monitor me during Thanksgiving as no one would be there. Maybe I could at least start my stims then and monitor right after the holiday?

We'll see.

It's so hard to be patient when I have so many damned setbacks like this.

Along the surrogate route, I placed an online ad for a gestational surrogate. Three gals have written so far. Wow. I'm a bit scared to go this route, but I am seriously considering this if I wind up getting the job that I am currently interviewing for. I can't afford a surrogate without a job that pays really well as it'll cost me at least $18K for her fees and, at most, another $6K for the attorney's fees to draw up a contract. Add in her travel fees and any other expenses and it's easy to imagine that a surrogate would cost me $30K. At least.

I would love to find a local surrogate to cut down on fees but also that I would simply want to be close by while she is pregnant - but chances of that are slim as you can't pay a surrogate in the state of New York. It's illegal here. Can you f*cking believe that? I simply don't understand why it's illegal for me to literally "rent" a woman's uterus in order to have a child. Also, why shouldn't she be able to provide this service for others? It's her body for cryin' out loud. Some women love to be pregnant and are thrilled to provide this service for others. It's their right to be able to do this! I don't understand our country's laws. We're so behind. We're in such a dark age when it comes to how we deal with fertility, the LGBT community, etc.

It's not illegal in the state of NY to have a compassionate surrogate (unpaid) so I have a few family members that I will ask to see if they might help. I am not hugely close to either side of my family, so asking one of them to help is very uncomfortable for me. Also, because I have immune issues that might be hereditary in nature, a family member might also have the same issues that would cause her to have repeated implantation failure as well.

Why can't the law realize that there are very good reasons for our need for paid gestational surrogates? We need access to women who are willing to do this for us who have had children of their own, or have been surrogates before - women with a proven ability to bear children. At least California doesn't have such silly laws. Paid surrogates are fine. Having the intended parents' names on the birth certificate is fine too. Sheesh.

I am so frustrated with all things east coast today. No offense to anyone who reads this on the east coast. But even the act of buying a bottle of wine in this blessed state (NJ) means that I have to hit up a "liquor store" in addition to a grocery store when I am out shopping. Same for NY, CT, and other surrounding states. The east coast is so puritanical. Anti anything that is outside of the box. State lobbyists say that allowing liquor sales inside stores will cause mom and pop stores, and wineries(!), to go out of business. Really? I don't think so. Opening up your market to new customers would increase sales. Multi level marketing. It's marketing 101 folks.

I've stopped being mad about this one - well almost. I just order my wine from California now and have it shipped here to NJ. Screw this stupid state and the horse it road in on. My dollars are going back to California where it is SANE.

CD4Day Before Surgery

2009-10-28T13:39:00.000-07:00

So surgery is scheduled for tomorrow morning at 11am. I'm due to arrive half an hour early, empty stomach, sans contact lenses, jewelry, etc. The BF will pick me up in the car at some point to be determined.

They're going to aspirate the cyst on the left ovary, asprirate the endometrioma (chocolate cyst) and flush it with a tetracycline wash to assist it in healing, and then they are going to do an HSG to see if the fibroid that we partly dealt with in late July is in fact still behaving.

I'm still sorta stunned that it all came together as fast as it did.

I guess the fibroid is the limiting step. If it's still there, I'll continue with the cycle but I'll freeze everything and then head to SF in November to do the full blown surgery. I'll return and do another course of IVF or two, banking embryos as I go.

When I have enough, I'll do CGH testing to determine which are good and then I'll transfer those.

As a side note, I'm currently interviewing for a dream job in NYC right now and I am thinking that if I get it, it might make sense to go the gestational surrogate route rather than fight my immune system AND the stress of a new job.

I posted an add on one of the surrogate websites to see what I could get. If I could find a gal outside of an agency, willing to carry my embryos for $20K, I think I'd do it in a heartbeat. But NYC has rather inhospitable rules/laws with respect to surrogacy. Surrogate contracts that include compensation are not valid in the state. It seems that you need to look to the state in which the surrogate lives in order to determine which laws come into play. Here in the tri state area it gets confusing as there are many states in distance of each other. I live in NJ, but I will likely be working (and cycling) and delivering in NY. PA and CT are within two hours of me. They have their own rules and regulations. It gets confusing. I'm just now starting to seriously consider this route and it's daunting. Agencies and lawyers all want a cut of the action (ie, money) and that's just so incredibly frustrating when I've already spent a small fortune when I didn't have IVF coverage.

So, I am starting to feel that I might be at a crossroads...I will likely have to decide in the space of a week or so if I am going to get serious about a gestational surrogate.

CD2Busy Day of Busy Work

2009-10-26T17:07:00.000-07:00

Got up at the crack of dawn to see Dr. Indian in the Big Apple. Two trains to get there and about a mile of walking. The place was pretty empty, luckily. They took my blood and put me into an exam room. Two of the docs that did my retrieval came in to do the U/S. I told them that I was having pain on the left side and suspected a cyst. They checked, and as I suspected from the nagging pain on my left side, I've got a good sized cyst on my good (left) ovary about 17.8mm large. Endometrioma on the right side.

Fuck.

Canceled again.

Just when I THOUGHT that I had things all planned out.

I decided to spend some time in the city and just wander and think. I treated myself to breakfast at Penelope over in Murray Hill and then spent some time browsing Kalyustan's (the mother of all spice shops) before heading home. My head must have been in the clouds over the U/S findings because I wound up taking the train to Hoboken rather than Jersey City. It was only a delay of 10 minutes or so, but I haven't done that in a long time.

Back at home, I quickly got on the phone and made a bunch of calls.

I followed up with my reproductive immunologist to see which drugs I should continue and which ones I should cease and to beg them to prescribe some hGH for my next cycle. I called the pharmacy and ordered 2 months of lovenox, to arrive on Wednesday. I made an appointment with the current RE to discuss what happened. I called the Persian doc in Palo Alto to see if there were any cancellations this week. (There weren't but my December 2nd surgery might get moved up to November 23rd). And lastly, I fired off an email to Dr. Italian in NYC to see if he would simply drain my cyst and let me cycle.

He replied right away.

YES.

He instructed me to get myself on BCPs ASAP and to call his office in the AM to schedule the procedure.

Thank you universe.

Finally something is going to happen that includes my trying again as soon as possible. I envision that this means my surgery with Dr. Persian will get postponed or, better yet, canceled due to pregnancy. Fingers crossed.

And...while I was out...Dr. Las Vegas telephoned me to tell me her hGH protocol and tell me that she's working on getting a letter to Dr. Persian.

Things are falling into place.

I hope.