burnt toast life

a few answers and a billion more questions

As promised, here is the post all about Reproductive Immunology. Not sure if it makes much sense, but it’s something. Also, apologies if it’s repetitive. I actually wrote it a couple weeks ago.

On a good note, I think I am finally, after four days and hours of phone calls between me, my insurance, my OB/GYN, and the lab, getting my blood tests done tomorrow. Woo hoo! I also had a (free) consult with my mom’s chiropractor last night and found out that the right side of my spine is totally out of whack and my hips are “stuck” in one position. So hopefully I can get adjusted soon.

Apologies in advance if this post gets a bit too boring or technical. I am going to try to organize my thoughts logically here, but there is just so much going on in my brain. Also, sorry if none of this information is relevant. But if you suffer from recurrent miscarriages, unexplained infertility or IVF failure, there may be something of interest in the following mess of information. Here is my best attempt at working out the crazy wheels a’spinning in my head.

My mom bought me the book “Is Your Body Baby Friendly?” by Dr. Alan Beer. I knew that I would like it better than the “prevent miscarriage by ceasing your daily coke habit” book with just one glance – this book was THICK and HEAVY. It demanded respect. It sparked a little current of hope in me before I even opened the cover.

I’m not here to plug this book, per se, because I can’t speak to its effectiveness just yet. I will say that for $20, it’s definitely a worthy read if you suffer from any of the aforementioned problems. The first thing the book does is point out the absurdity of chalking up miscarriage and IVF failure to bad luck. The goal of Reproductive Immunology (RI) is to determine the source of these problems, and then to treat them. The authors are indignant that RE’s accept failure after failure or that anyone would say it was just “meant to happen that way.” They argue that a woman’s body was designed to accept and nurture pregnancy. When it fails, there is a reason for it. And – you guessed it – most of these problems can be solved with the help of RI.

The book spends a lot of time defending the field itself, citing examples of people calling Reproductive Immunologists “crazy whack jobs who are just out to get your money.” They follow up with proof of their success, describing women who had suffered seven or ten or (God forbid) thirteen miscarriages who carried babies to term by using their prescribed treatments. The book was full of hope, a lot of very in-depth technical explanations and a few logical reasons for recurrent miscarriage. Even if they’re wrong (which I doubt), the fact that SOMEONE was finally trying to explain and treat the mysterious tragedy of miscarriage made me want to weep with relief.

One thing I really enjoyed was that they laid out all the potential immune system problems AND the treatments. So basically I just saved myself $900 on a consult, because I already know what to do, right? Kind of. Here’s the thing: as I already said, Dr. L was so on point by prescribing Prednisone and baby aspirin. I’m so happy she did, because if she hadn’t, I’d be sitting here wondering if something as simple as that could have saved Baby Toast. Since many women they treat aren’t infertile, they also recommend estrogen supplements and Progesterone shots. And I’m like, I did IVF, I already have all that down on lock. It looks like I’ll be needing something even more advanced.

The most effective (if I’m reading correctly) treatment of immune system craziness seems to be IVIg injections. You have to pay a qualified nurse to administer them, they take several hours and you get injected with other people’s blood for $5,000 a session. Insurance doesn’t cover it because proof of effectiveness has not been established (and you can bet your ass that I’ve already searched for clinical trials). I’m going to say this again – $5,000 per session, and you need several throughout your pregnancy. So it doesn’t even matter if I want it, because ain’t no way in hell I’m getting it. Remind me again why I wasn’t born a millionaire?

So. Moving on. The only other thing that I haven’t been prescribed and that I can afford (possibly) is Lovenox injections to stimulate blood flow and Heparin injections (usually used to treat rhematoid arthritis) to balance out ANA antibodies. That’s a lot of injections. Not like I care. But throwing things at the wall and seeing what sticks – is that a healthful approach? Does any of this make sense for me?

So you know how when you’re going through infertility blogs, you look for someone who has a similar background and struggle to yourself? And you follow that person, hoping that your paths will be similar, especially if that path ends with a healthy baby? And it makes you feel so much less alone? I’m beginning to think I’ll never have that. I feel so different from everyone else. First of all, I had a pretty cut-and-dried case of infertility. The sperm analysis told the story of why we weren’t conceiving. We did IVF. It worked. Problem solved, right? Well no, then I had this whole other incredibly complicated problem. Not to be all “woe is me,” but I think I got dealt a pretty shitty hand here. We spent years solving one problem only to find another giant, mysterious, awful, basically unsolvable complication behind it. Sorry to sound like a broken record, but it’s just so damn frustrating. When will we catch a break?

As I’ve mentioned (perhaps ad nauseum), I have never, in all my research, found someone whose food intolerance seemed linked to their miscarriages. I feel like I’m trying to solve some unsolvable mystery here. There’s a short little section in the book that discusses elevated levels of eosinophils and asthma and the possible link to miscarriage, but it’s a tiny little snippet and it doesn’t discuss food at all. I cannot be the only person on earth who has had this happen. But am I supposed to waste $5,000 on other people’s plasma in case I have these killer cells, when really it seems like food intolerance is the issue? If I could just find someone with similar issues, I could follow her protocol. But I am alone here. There is no one like me at all. (As Amy pointed out, gluten allergies have been linked to miscarriage, ’tis true. I think that’s a fairly new school of thought and it’s not mentioned in the book at all. But you can bet your ass gluten is akin to rat poison when it comes to my new diet).

Here is what I know: my body attacked healthy, normal growing babies. That is not normal. Something inside of me is not right, and that thing needs to be corrected. I had my heart set on Bland Diet so I could absolutely ensure that my food intolerance didn’t cause my immune system to overreact. But this book… it’s making me question if the problem runs deeper than that. Maybe the food reactions are just a symptom, not a cause. And lets be honest, the term “NK Killer Cells” is really scary. It’s been haunting me daily since I saw it.

Yup, I’m talking in circles. I’m sorry. I’m happy that I read this book and that people don’t just throw up their hands and say, “It’s God’s will!” I absolutely believe in God, but I also believe that God gave us scientists to solve these problems so we don’t have to just suffer through them. Interestingly, the book includes an entire chapter on Eastern medicine (though Dr. Beer cautions that these remedies should be used in addition to, and not in place of, his protocols). The author of the holistic approach section starts out by saying she’s skeptical of using too many drugs and foreign substances. She, of course, recommends acupuncture and a peaceful diet. I like the idea of that. But is it enough?

So many questions, not a lot of answers. I don’t want to leave things to chance, but I don’t really think I have a choice.

I have, like, a week to figure this out. I feel like the answer is there, I just need to find it. Maybe that’s naive… maybe that’s crazy… yeah, it’s both. Definitely both.

and now it’s really over

I can’t lie to you guys. This is a safe place, so I’m going to do what I always do and speak freely. Here’s the truth: I did hang onto a shred of hope for my ultrasound today. It’s stupid, I know it’s stupid. But I just couldn’t help it. For one thing, they made me keep taking the medication, which indicated that they could know something that I didn’t. For another, Eric kept his hope alive, too (mostly for the same reason). I’ll never forget on Tuesday morning hearing him say from the hallway, “…and then they’ll say, it’s a MEEEERACLE!” I laughed. But I also hoped. It’s so hard to not hope.

But alas, my child did not become the next Lazarus. The New Hope ultrasound machine was not broken on Monday. All of my PIO shots this week have been a total waste of time, pain and money. It’s so damn depressing to really let go. Oh, and I finally stopped bleeding after 9 days. I guess now I can look forward to bleeding again sometime soon. (Like, Monday-ish).

We decided (me, my mom, my OB/GYN) not to do another D&C. I’m not as far along, and it’s not twins. I just want my body to heal, and for this task at least, I trust my body to do the right thing. Last time one of the reasons I opted for the D&C was that it sped up the process, but since we’re taking a break anyway, I figured this would be a natural way to pace myself. I got a script for some drug to induce the miscarriage, which is pretty cool. I didn’t know they had those. I thought I just had to wait and wait. But really I can time it and it should only take a few hours. Something else that made me feel a little better was that the embryo is gone already. No more sac; no more visible fetal pole. So I don’t have that super creepy feeling of knowing it’s still… you know… in there. All that’s left is tissue and stuff.

As if this evening wasn’t traumatic enough, I went directly from that soul-crushing ultrasound to the viewing for Eric’s friend. He was 31 years old. It’s just so damn unfair sometimes. I truly wish there was some way to make sense of all this tragedy or to see some kind of reason for it, but I just can’t. You know what? There is no reason. Life just sucks today. Oh, and I happened to overhear a conversation between two young-ish moms as we were walking in. I heard one of them say, “It’s just so different now that we have kids, you know? It makes it so much more real.” Oh, thanks, honey. Thanks for insinuating that my childlessness makes me less capable of feeling sorrow over death. That was EXACTLY what I needed today.

To add another layer of depression to this whole shitty situation, I looked into Reproductive Immunology and Dr. Braverman. I gave them a call, only to find that the consult is $900, not covered by insurance. That’s just the consult. The whole point of doing this clinical trial was that we could not afford to do infertility treatments out of pocket, remember? It would be one thing if it was just $900; I could probably come up with that. But that does not include any of the blood work and testing, it’s just a basic appointment to go over history and have an ultrasound. I would gain nothing from just doing that. I know many of you suggested Kwak-Kim (and I thank you as always for your advice), but I’d be willing to bet she’s not covered either. All of these doctors bill as infertility and Pennsylvania does not mandate infertility coverage, so it’s extremely rare to have it. I’m fucked.

Dr. L insisted that Braverman would be covered. I didn’t believe her, but it was still a nice slap in the face when my theory was confirmed. I’ve been finding blogs of people who have gone to Kwak-Kim and they have been gracious enough to write out the protocol she suggests. It sounds like a lot of PIO, Prednisone, baby aspirin, Lovenox and supplements. So… I’m already halfway there. Is it ridiculous to think I can just guess what she would say without actually seeing her? The only other option I can think of is to see a regular old immunologist around here (which would probably be covered) and see if he/she could order the tests or prescribe the same things. Maybe I would get lucky and find someone who has a modicum of interest or experience in immunology as it relates to miscarriage. I’m clutching at straws, I know. I just need to figure out a way to get some answers on my insurance’s dime rather than on my own.

My mom and I had our post-ultrasound pow-wow and talked about what’s next. She insisted that it’s more than just diet… it’s stress. I need to let go of stress and relax for once in my life. I think part of what makes it so hard is that the process itself is so stressful, which is why taking a break can only help me. I need to get right with my emotions and control-freak tendencies. I need to calm the hell down. I’ve committed myself to starting yoga and at the very least trying acupuncture. I stopped at Barnes & Noble on my way to the appointment to pick up a book called “Preventing Miscarriage.” Let me tell you how fun it was when I couldn’t find it and had to ask at the information desk, loud enough for a gum-snapping college student to overhear. Whatever. I picked it up and started flipping through. There was an entire chapter explaining the trauma of miscarriage, a particularly long section on having an incompetent cervix (so not my problem at all) and a brief section on Environmental Factors. They cautioned against using cocaine and methamphetamines, mentioned the dangers of air pollution and advocated a healthy diet. Seriously? If I was snorting lines of coke every night, I would NOT be questioning my miscarriage. Needless to say, I didn’t buy the book.

My mom has been going through old calendars trying to figure out the name of the doctor who she saw back in ’99. At our pow-wow, I mentioned that I was interested in the book “Is Your Body Baby Friendly?” by Dr. Alan Beer. Her eyes lit up at the name. “That’s it! That’s who I went to see!” she said. I remember how much she said she liked him and how nice he was, plus it turns out he was a mentor to Dr. Kwak-Kim (my mom even talked to her briefly, way back then). It seems like some kind of sign. Dr. Beer has since passed away, but at least I can read his book and hopefully it will have better advice in in than “don’t snort coke.” It’s definitely more in the budget than a $900 meeting just to gaze into Braverman’s baby blues.

Well, after a day chock-full of depressing ultrasounds and viewings for friends who were taken from this Earth way too soon, I’m off to bed. We’re heading into the woods this weekend for a family camping trip. And you know what? I can drink alcohol. And you know what else? I plan to.