Overwhelmed by IVIg

I have spent the better part of the day faxing my prescriptions from Dr. Z to every pharmacy in the country on his list. The quotes are starting to pile in and it's becoming more and more clear to me that I'll have to order my Bravelle from www.ivfmeds.com or from www.theflyingpharmacy.com. I just can't afford these steep American prices. Anecdotally, the pharmacist of the latter commented that he's getting loads of patients from California. Maybe we can't afford our IVF meds and the high cost of real estate? Hmm... So the microdose Lupron kit will have to be compounded (it's a specialty item) so I'll go for the best stateside pharmacy I can get. Amazingly, my heparin isn't going to be covered unless it's administered by a nurse. Imagine that. They'd rather pay a nurse to shoot me up twice a day than allow me to do it myself and save all us a rather tidy sum of cash. Well no one said that the health insurance industry made any sense. Did they?

So last night while perusing the threads on FertileThoughts I found an immunology support forum on yahoo. These ladies know more about immunology and IgG's than most of the folks at IIC do. I also spent a lot of time reading the material at SIRM and at Dr. Beer's website. I must say that I am floored at the complexity of research that has been done in the field of Reproductive Immunology. With this much known about RI, why on earth aren't more RE's testing for these disorders? I can't help but think that the RE's that aren't testing are banking on repeat customers and, oh yes, the added $$ that these repeat customers pose to bring to them.

Today I spend some quality phone time with Chris of Medical Associates Infusion Center in Los Gatos (Dr. Beer's office I presume?), who told me that IVIg is often covered by Health Net PPO under two conditions. (1) Your doctor must first preauthorize for the IVIg by phoning Health Net, and getting their preauth form, and (2) Specifying that the IVIg is to be provided by Curascript (who only provide Gamunex as their IVIg brandname). In my case, I test positive for both APAs and NKs so the relevant CPT codes in my instance are 279.4 (primary immunodeficiency) and 795.79 (anti-phospholipid syndrome). Test results go along with the preauthorization and are sent to Health Net. Upon approval, a copy of the preauth is sent to Curascript and SVIG. Then off I go into infusion land.

It's a trifle unnerving to think I might have the pooled blood products of hundreds of people injected into me. Ick, ick, ick. When I worked in immunology at IIC, we'd often have to take huge vats of pooled human serum and process it (can't explain much further...those recipes are top secret!). We'd start by taking out the big proteins like fibrin...disgusting. The fibrin clots looked so much like chicken breast meat that I had a really hard time eating chicken for a very long time afterwards. I have a pretty high tolerance for things, a high "gross out" factor if you will, and the sight of fibrin clots in a vat of pooled serum nearly made me vomit on more than one day. I exaggerate not. So the idea of injecting something similar to that which I worked with kind of turns my stomach in a way that only another lab rat could understand.

It's midnight and my leg o'lamb roast is still in the oven roasting...maybe I'll get dinner shortly after midnight? Long day...

Viagra for Infertility? Who knew!

Finally Viagra has a purpose, a greater purpose I might add, besides inflating the flaccid penises of men whose penises should have long ago been laid to rest. Okay, okay...I'll admit that there *are* younger men that really do need the stuff, there are some genuine malfunctions of the penis to be had, but we have ALL heard of the horror stories of men in their golden years with perpetual hard-ons chasing their ladies around the house...ugh...woops, I've digressed.

The folks at SIRM have discovered a new use for viagra. It would seem that vaginal viagra suppositories can increase blood flow to the nether regions, leading to improvements in endometrial linings, and boosted IVF success rates. According to the Randine Lewis (author of: "Infertity Cure"), increased blood flow to the ovaries is a "good thing". One would imagine that increased blood flow would result in better quality eggs.

Hell, where's that box of blue pills TDL bought us in Mexico....

First it's APA, now it's IVIg!? WTF?

Okay, it was bad enough that my APA's tested high enough that I'm doomed to two shots of heparin a day, but hell I can top that. I just got word (just today) that my NK Assay (Natural Killer Cells Assay) came in and I'm "not normal". What does that mean? Well, on a scale of 0 to 5, 0 being normal, and 5 being the worst Dr. Z has ever seen, I am a "1".

What the fuck?

So I've done some very meager IVIg research and know that this means I have to get an injection of immunoglobulins...but damn, can't I just do this myself and skip the ever-so-expensive fancy assed clinical setting with the IV pump? This is just insane. The cost for IVIg here in trendy Los Gatos is somewhere in the neighborhood of $2000. But since IVIg is administered in units based on one's weight I am surely doomed. I weigh 162 most days, more than many women as I'm tall (5'10"), so I'm sure that they'll insist on some extra IVIG just because of that. OMFG.

There is no end in sight to this hell.

Excellent reading on IVIg here. Essentially: if you're +NKa, you have a 4% chance of conceiving without IVIg, and a 50-55% change of conceiving with IVIg. I'm sold.

Watch Where You Stick Those Needles!

Just stumbled onto a thread where an acupuncturist seems to think that a woman's choice of "injection site" might be interferring with her fertility.

The thread is here:

Question: today doc. give hormone shots around the bellybutton everyday ,sometimes the woman is instruted to give her self or her husband. --? a needle at CV5 is said in many ancient text to cause infertility. can this be the problem. i recently have 3 cases of women that for 3 yrs. have been through this , now they came to me . thank you for this site ,:Larry

Answer: Yes it is possible if it is given near Ren-5 a point which does have a history of use to cause infertility. However, the reason is also the hormonal manipulation itself which damages the ovaries. Giovanni

Actually, I've seen instructions from Dr. Z's office that say that you should place your injections in a semi-circle around your belly buttom so as to not overuse an single injection area. Using this instruction, one would eventually wind up hitting a few acupuncture spots here and there...even ones that might cause infertility or even miscarriage. I guess I'll be seeking the advice of my acupuncturist team at East-West to get a "body-map" of where I can inject safely. Damn...just ONE MORE THING to be aware of. Who would have thought?

The Day After

It's the day after Christmas and I'm feeling like a bit of a sore throat might be coming on. J & D's 23 month old was ragingly sick today and we were with them last night. I didn't spend a lot of time with him, but he was coughing a bit. 24 hours seems like too short of an incubation period so I'm looking backwards a bit more...maybe to Christmas Eve. I am willing to bet one of our guests was sick and didn't mention it. Sigh. I really wish people would stay home when they're sick.

Well, it's lots of Chinese herbs and turkey soup for me. Hopefully this one goes away really fast. We've got a terrible flu going on in our area called "The Silicon Valley Flu". Apparantly it's the one that nearly everyone in California is sick from. I read somewhere that getting the flu when you're pregnant is correlated with having schitzophrenic children (or something equally disasterous). Hopefully there's no effect to antral follicles when sick.

Oh...Dr. Z wrote today and said that the EPO and vitez (chasteberry) won't interfere with the functionality of my birth control pills. Good to hear. He even encouraged me to keep on taking them. :-) BMT was up today to 98.3...so the BCPs have kicked in.

Spinning Calvin into Existence

JS has said that she is certain that I will get pregant and have a boy. She assures me that she has a 100% success rate in predicting the sex of people's children. I'm not pregnant, she warns me, so making a sex prediction before I am actually pregnant has it's risks of being wrong. But she insists that I'll be a mom. (I just hope it is with this one IVF cycle...and not after the 6th or7th!).

So she has a premonition, if we will call it that, that I am going to have a boy remniscent of Calvin. Yes, THAT Calvin. The Calvin of Calvin & Hobbs. A strawberry blonde devil boy with much too much gel stuck in his hair who will do things that will make me shudder as a mom. This morning in an IM thread, we "spun Calvin into existence" kind of like how the three Witches of Eastwick spun Jack Nicholas "into being" as their ideal man.

Of course, we'd need a fluffy orange cat for his sidekick. Kubla will suffice if I can pry him from the clutches of his current owners who don't let him on the couch, don't snuggle with him, and put up barricades so that he can't socialize when company is over. I'd give that kitty bubble baths and a pillow on my bed. He'd be spoiled beyond reason as I mush up his face and plant kisses all over his orange head.

Mrow.

Christmas wish...

Christmas wishes to each of my 10 follicles to grow strong and hang in there for the weeks to come.

APA - Antiphospholipid Antibodies are NOT my Friends

I got my APA tests back yesterday, along with a plethora of other labwork that Dr. Z ordered. I had three positives and 2 borderlines which means they'll be adding heparin to my fertility cocktail mix. 3 ampules of Bravelle or Gonal F in the AM and a heparin chaser, and repeat in the PM. 4 syringes a day at minimum. Ouch. I will no doubt feel like a human pincushion after a short while. Sadly Nurse J said that if I was to get pregnant...that I'd have to continue the twice daily shots of heparin until the end of the 1st trimester and then they'd retest my APAs. If they were still showing up it would mean another 4 to 6 weeks of heparin...repeat.

Now the heparin is a rather inexpensive substance...lots of people take it for blood thinning as I've read online. But from what Nurse J said, if I am so unlucky as to test positive for MTHFR, then I might have to use Lovenox instead of the Heparin, and it is quite pricy. I didn't quite catch the significance of the three different allele patterns for the MTHFR. It's either aa, ac, cc. I'm not sure which of the 3 positive allele groups call for lovenox, and which call for extra baby aspirin and folic acid but I'll have my test for this back hopefully by next Tuesday and then they'll know which injectible blood thinner I'll be using.

And I was nervous about the AM and PM Gonal F shots? Sheesh....

Antral Follicle Count Today.....

We went and saw Dr. Z today. I had 10 antrals...last month at Nova I had 16. I was really bummed to have that many fewer. I did find an article online that said that taking aspirin can boost follicle/egg production, and last month I "was" eating a daily aspirin after my IUI "just in case". Kind of makes me simultaneously wonder and kick myself for not having had the sense to do that again this month. Grr.....

But in response to my shock at the number TEN, Dr. Z said "this is very good" and that if we had fewer that 6 then he'd worry. So I wonder if 10 is good, normal, or bad at the ripe age of 41. I have so many questions it's driving me batty. Can you actually have more or less follicles at the next checkpoint that were found on the antral scan? (I think he alluded to a "yes" with respect to their being more). Last summer my FSH was perfect, 7.5 with an E2 of somewhere in the mid 50's. Couldn't ask for much better. But since October it's been hovering about 11, dropped to 7.5 but my E2 skyrocketed to 92.

So today I was out in the garden taking in the wonderful sun, thinking "how can my FSH levels be so whacked out" and I had this eureka moment. I wonder if anyone has done a seasonal study on women's FSH levels? I mean this: most animals only breed in the spring...humans are thought to be animals that breed year round. But what if we're not completely ? What if we are indeed subject to some seasonal ups and downs in terms of women's FSH levels? FSH might only be high enough to reproduce in spring and summer months, and then it plummets back down a bit in fall and winter. Of course this would be very easy to check by looking at cumulative numbers for birthdates throughout a year and determining if there was a seasonal pattern. Hmmm...

Aspirin Increases Egg Counts!?

Aspirin & Infertility

Damn, last month after we did our IUI I took prophylatctic baby aspirin (81mg a day) just in case I did get pregnant. Right after that my AF came and I went to Dr. S to have my antral follicle count done on CD5. I had SIXTEEN antrals: 9 on the left, 7 on the right. Dr. S said that was "high normal" for my age. I was intrigued, and elated. But then just last night I found this article and read the following:

Some IVF patients are treated with aspirin and heparin or immunoglobulin to prevent pregnancy loss. Aspirin and heparin therapy is used for some women who have had repeated spontaneous abortions, even without APA problems. Doctors at the CER Medical Institute in Buenos Aires compared 149 women undergoing IVF treatment and who took 100 milligrams of aspirin daily with 149 also undergoing IVF, but who did not take aspirin. Study results showed that 45 percent of the women who took aspirin became pregnant compared with 28 percent of the women not taking aspirin. The study also showed aspirin appeared to contribute to increased egg production. Researchers retrieved an average of 16.2 eggs from the women taking aspirin compared with an average of 8.6 eggs from women not taking aspirin.

So I should have stayed ON the baby aspirin throughout my cycle to ensure a higher egg count. Drats. Why did I just find this right now? Why isn't this advertised EVERYWHERE? I probably should have stayed on the DHEA, too, but I was fearful that it was the reason my E2 levels doubled last month.

Sigh.

Labwork Hell

It's bad enough that Health Line laboratories mislabeled & lost my Mycoplasma/Ureaplasma and other miscellaneous cultures from back in October, but just last week, their phelbotomist failed draw enough blood to do all of my tests (what, 7 vials wasn't enough?). The lab person said that one of the vials was halfway full. Hmm...I know she was having a busy day, but the needle was hanging out of MY arm...I wasn't going anywere til she was done. So my MTHFR (methyl tetra-hydrofolate reductase) test slipped by. Methyl tetra hydrofolate reductase. What a mouthful.

Yesterday I called Dr. G to see which results had came in. They said, "They're all here." Well skeptical me wasn't too sure about that. Me and the PA compared lists....and lo and behold, the MTHFR was missing. Also missing were the APA (Antiphospholipid Antibody) test and NK (Natural Killer) Assay that Dr. Z requested. So I went back to Health Line laboratory today and they redid the MTHFR test and offered to do it gratis. Okay, I'm happy. After hearing that it's normally a test that costs close to $700, I won't bitch too much more.

So I called the lab that did the APA test. The results were faxed to Dr. G on 12/8? But again, I'm feeling like a Doubting Thomas: I just called Dr. G just yesterday and they weren't there.

I next phoned the lab that did the NK panel. Luckily these folks have their act together. They said that the test was about to be mailed off but that they'd be glad to fax it today, yes today (!).

Long story short: Health Line has seen better days, but I guess they redeemed themselves a bit by comping the way too expensive MTHFR test. So I should have all of my labwork in by Monday or Tuesday and I'm sure by then I'll be knee deep into negotiations with the anaesthesiologist over my October surgery bill. Another week, another mindless crisis.

IVM in Canada .:. Acupuncture .:. Pens Vs. Powder

Last night I wrote to the McGill University Health Centre in Montreal, Canada where they do a procedure called IVM. (It's also being done in Georgia and perhaps a few other places that I haven't yet been able to locate, but according to sources, the folks in Canada are essentially the world leaders when it comes to this process. This morning they sent me a bunch of documents to fill out and submit with our medical records. I'll wait until my labwork is in from Dr. Z.

IVM, or "In Vitro Maturation", is a godsend to those of us who can't bear the thought of injecting ourselves maybe 3 times each morning and another 3 in the evening, not to mention to horrific cost of the gonadotropins. Essentially, it's egg retrieval without the injections, the long wait, or the expense ($4000 for IVM in Canada, versus $8200+ for IVF here in the states). I wish it would catch on here in California. J and I have decided that without a doubt, if our first IVF procedure is a dudd, we'll be hopping a plane for Montreal as soon as we can. If my estimate are right, that would be March 2006. Of course, that is unless I am able to find a more local lab that might do the procedure.

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Yesterday I went to acupuncture at the University of East-West Medicine in Sunnyvale. My 11:30am appointment was rescheduled for later in the day and my usual doctor, Dr. T, wasn't there. I wound up being assigned to a different doctor who was quite nice, and her English was rather good. She had two assistants with her, which is normal. I think she and I are communicated a bit more efficiently so I'm going to stick with her for a week or so to see how things go. I tried to emphasize to her that the most important thing for me right now is to produce huge quantities of eggs....LOTS OF EGGS! She did seem to understand and proceded to stick about 7 needles into my abdomen. Well, we're in the right general vicinity, but being that I know absolutely nothing about acupuncture, hopefully we're on the right track.

She emphasized, like my previous acupunturist, Dr. QZ, that I should be coming 3 times a week for best results. I resisted such frequent visits with my first Doctor, thinking that it was more of a ploy to keep me as a regular customer, but as Dr. L explained it, going to sessions once a week is more for chronic conditions and for people like me who are trying to force an immediate reaction, a much more aggressive routine is required. So I acquiesed and signed up for two more sessions this week and walked out with yet another 3 bags of noxious smelling/tasting herbs. I'm not sure if I'll be able to tolerate them...they taste like nothing I can explain.

Our antral follicle scan is late next week or maybe the day after Christmas...hopefully we get at least as many as I had last cycle (16: 9 on the left, 7 on the right...which is the ovary that was operated on in October).

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Rant:

Dr. Z's nurse is saying that I can only use the powdered form of either GonalF or Bravelle. Bummer is, the pens are much easier to find these days, especially from www.ivfmeds.com, where the prices are much better than here in the US. I'll have to ping Dr. Z to see if I can go ahead and use the pens....it's just SO MUCH MORE AFFORDABLE. $1500 via my friends in the UK versus something like $3700 at Costco (and that is with their "special bulk discount". My god. So I don't see what their issue is with the pens. The dried form needs to be mixed with NaCl and there is just so much more room for screwing up the mixtures that I just don't even want to go there.

Also seeing that there are loads of surplus gonadotropins to be had on www.freegaragesale.com. THANK GOD!

If it's not one thing, it's another. I'm telling you.

The Infertileblogapalooza

Approximately ten days remain until J and I start out first round of IVF. I have been saying for months that I would start a blog to chronicle my baby-making endeavors. I almost said "my infertility dilemna" but I so dislike using the words "infertile" or "infertility" to describe my condition because I do not necessarily *feel* infertile, and it is yet to be seen whether or not I will have a child. "Infertile" itself seems like a conclusionary word, which means the outcome is already determined and that one should not attempt or bother to escape the state. So for now we'll just accept that I have bad plumbing and go on from there.

Yesterday I had the great fortune to meet with a group of fantastic women who are all going through various states of treatments for similar conditions as mine. Most of them blog and it was the writing that brought them all together in the first place. Each woman (save three) had in common the fact of not being able to have a child, but it was truly amazing to see how varied each woman's story was, how unique her experience. Two months ago I cried when I found out that my right fallopian tube was blocked and that my left was nearly totally blocked, but after meeting the ladies at our Infertileblogapalooza, I realize I haven't yet met with a loss on par with what these women have endured. I am just embarking on a path that many of them have been on for years. I have no idea where it may end up at.

I'm hopeful yet frightened at the same time. Hopeful, of course about being a mother, but scared to death that this journey can very easily drain us both financially and emotionally. Some of the ladies yesterday told tale of having done in excess of ten IUIs, 4 or more IVF cycles, and so on. And yet they persist. Let me tell you that my hat is off to these ladies for their perserverance. It totally incenses me that these wonderful women are unable to bear children while the "crack whores" of the world conceive at the blink of an eye, and then go on to smoke and drink throughout their pregnancies. Where is the justice of it all? I think that, more than anything, the injustice of our position is the hardest to deal with.