Tag: immune disorder

Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?

 

Amy: Hi, I’m Amy Klein, and I’m talking to you from New York City. Yeah, I’m a journalist and a writer.

 

P: Yeah, I saw your book The trying game which is a great title. I’m assuming about your journey trying to get pregnant.

 

A: Yeah, it’s called the Trying Game: Get through fertility treatment and get pregnant without losing your mind.

 

P: Amy that feels like a tall order. 

 

A: Well, you know, I had fights with them about “get pregnant” in there because it’s not just for people getting pregnant especially not only for people who are doing for Tony, who are struggling without losing your mind I mean, that is a tall order. Overall how to keep your sanity. I want to do with

 

P: I appreciate that disclaimer. And one thing I want to just note off the very top I had a hard time getting pregnant also. And one thing that was interesting to me about your book just superficially is that we’re trying I’ve never been a part of my vocabulary until apply that word to getting pregnant. Because, you know, as you say, in your book, as many people say, you know, we walk into this with the idea of you know, we’ll have unprotected sex and will be pregnant

and then moving along. 

 

A: Right, and then it’s not easy. I mean, that’s what I thought okay. I’ll just do I promise you a miracle baby. You know, you just go to the doctor and boom, you get pregnant to try and represent that liminal state between the baby and not the baby. 

 

P: Yeah, 

 

A: not being pregnant.

 

P: So just to give you a sense of what code try means and Amy’s life. Here’s an excerpt from her book, The trying game, she writes, here’s an embarrassing confession. When I started writing the fertility diary column, my New York Times editor and I thought I write about trying to get pregnant for a bit, then transition over to “regular pregnancy issues.” “Probably three, six months,” she said, HA!, how naive we both were about fertility treatment. Then she writes, it was only after I married Solomon at 41 and found myself pregnant a week later that I realized I really want to have a child. Over the next three years, I 10 doctors, nine rounds of IVF, four miscarriages, three acupuncturists, two rabbis. One Reiki healer, five insurance companies to egg donors. 1000s of pills shots and supplements and band aids, and amazing repeat pregnancy loss specialist. And one real live baby. One beautiful baby. 

 

So let’s go let’s start way back here. Do you have siblings?

 

A: I do I have three siblings.

 

P: Growing up in a family with siblings. Did you imagine that you’d have a family of your own.

 

A: I wasn’t sure if I would ever have children. I mean, when I was growing up, that wasn’t an option to be child free by choice. When I was I grew up orthodox actually, in a community where people had four or five kids not like 10 or 11, but four or five kids. And so that wasn’t really an option to me, but I just, you know, I have friends who got married at 22,23 24 and I just said okay, I’m gonna get 25 and then 25,30 30 I’m not gonna get married at 35 Then at 35 I was no longer religious but I started noticing Oh, you know, like, not just people and other people have babies and families too. I really let it sit down and think about because I can’t just keep pushing it off. At a certain point I have to decide whether I want to have kids or whether I don’t want to have to at 35 that’s when I kind of started sat down and having that dialogue with myself. Like do I want to have children right now? And for me, I think for anyone going through a journey in life where you have to change something even countries you lose a parent, something happens in your timing or 30 and I left the religion that I was raised on you know, that takes you out of your life and that takes some time to recover and that’s, you know, may take time before you start your family or before you can meet someone until you are like a whole person and for me, you know, leaving my religion in my 30s definitely took a long time and I had to look at myself say oh, do I want and then I realized you know even though I grew up in a very family oriented community, oh, you know what, even if I’m not part of that communityI think I still want to have kids if I meet the right partner, and I didn’t meet my husband till I was 39.

 

P: Okay, and so, describe how you crossed that threshold how you decided okay, I do want kids.

 

A: A lot of therapy. 

 

P: Okay

 

A: For me, after I left the religious community and also realized, well, I don’t really know how to raise kids, if I’m not in that framework. I started doing a lot of kind of my nieces and nephews and I realized that I wouldn’t be the same parents as my parents were and I didn’t have to do that parenting and just going through seeing my brothers kids who were very religious, not like me, and I was like, oh, you know what, I think I am able to do this. And I don’t have to do it the same way that I was raised, I don’t have to do it with the same parent exam. And I think I can do a good job. So that made me realize that I was going to be a mother. I wanted to be a mother and I also thought I could. I don’t think I didn’t think I’d be able to get over on my own issues with my parents. Unless I had I wanted to move on and have a family of my own in order not to repair the past, but just to move beyond and you know, inculcate my own values. And that took me a while but I also knew that I wasn’t equipped to do it on my own. Like I knew I couldn’t be a single mom, I didn’t have the resources and I didn’t have the system of support. And that was, you know, everyone has equal choices. And I’m sure if I made these choices today, if I was a 35 year old today, I might make different choices as well. I may have seen the child in the community and set out totally valid. But that’s where I was when I Oh,

 

P: yeah, yeah. All that makes sense. So you met your partner and and take us on this journey. So you from your book, it sounds like you got pregnant pretty easily the first time.

 

A: So your partner right away. Interesting story Is he is he said like three or four months day, why don’t we just get pregnant, and I still had too much of like, my religious upbringing. I couldn’t just get pregnant and skip all the steps. So you know, we we got engaged.

 

P: wait,  are all the steps like getting married? Is that what the steps are?

 

A: the steps are like dating for a longer time, making sure that like, because it was only three or four months, and I’m impulsive as a general. You know, and I talked about this in my chapter and regrets because we didn’t get married. So I was 41. And I did get pregnant the week after the wedding. And then I miscarried. And then we went on our honeymoon and I got pregnant again and miscarried again. And I talked about this in the chapter the regrets people always talk about like, and I say, oh my god, what if I had said yes to my husband and I would have just gotten pregnant at 39 instead of 41. Like and that’s a beautiful story that I could tell myself, but you know, can play on that whole story. Well, what if I had gotten pregnant? I was 39 and I miscarried once and then I miscarried again and maybe we didn’t know each other that long, which is why I wanted to in general, miscarry, it’s fine. So we’d only been dating at like, for my boyfriend. I’m out of here. I dont’ want to….So a lot of people have a lot of regrets. And I talked about this. This is before IVF. You know, what about the abortion I had in college? What if I hadn’t had that abortion? What if I hadn’t done this and there’s a lot of things that you can go back at what you’ve done differently. But as a therapist I spoke to in the chapter said, you do the best decision that you can. And if you likely play out that scenario, like you wouldn’t have made any different decisions. So when you’re faced with anything, any challenge you’re like, Oh, you look back in time, but you know, I didn’t want to get married after three months, because I didn’t think we knew each other. Well, I didn’t want to get pregnant. I didn’t think we knew each other well enough. They wouldn’t, you know, it would have been nice to know that I wouldn’t have had to go through four years of infertility and four miscarriages. but I don’t think I could have made a difference at the time

 

P: Yeah, yeah. It’s impossible to know. And pregnancy is such a complicated state. That it’s also impossible to know what it would have looked like two years earlier or you know, maybe you were doing something two years earlier that you weren’t doing later and that would have you know, I don’t know played it more than four miscarriages right like you just there’s no way to know you know,

 

A: right and likely to be you know, I finally, my miscarriage was we’re actually not due to the age of my eggs anyway, in I mean, I started this journey, you know, we got pregnant twice. Naturally, we had two miscarriages and then we started IVF. And then I still had two more miscarriages, and it wasn’t because of the age of my eggs, it was because of my body.

 

P: So so let’s go slowly through this so So usually, I thought after two miscarriages then that’s a inflection point where you go for help because more than one miscarriage potentially signals something Is that true or or what was your experience

 

A: it should have been an inflection point but I was just an OB GYN and some OGB OB GYN especially. Well, and this is like, my daughter seven now. So this was 10 years ago. I just realized, we do have a daughter. So this was let’s say it was like 10 or 11 years ago. The OB GYN first of all at my age after the first miscarriage should have been helping me and once the second one, she I did go to a fertility clinic, but then sometimes even now, fertility clinic are not always the best. Place for repeat miscarriage because they might  just start you on fertility treatment when you don’t even need fertility treatment. Took me a while I went to one fertility clinic and they just told me I needed some more vitamins and that’s why I have moved here and it took me another miscarriage and another doctor to look back and say, Oh, no, that miscarriage was normal. It was nothing wrong with your eggs. There was nothing wrong. It was your body. And it took a long journey because things are changing right now. I just want to backtrack for one second about miscarriages because you asked my advice to anyone who is undergoing a six or seven week miscarriage is if they can  to always have the products of conception. Because even though it might cost more money, you can know for certain if the embryo was chromosomally normal or chromosomally abnormal.

 

P: Okay, so what is chromosomal abnormality? Chromosomes are the physical basis for genetic inheritance. You’re supposed to get 23 copies from your mother and 23 from your father. chromosomal abnormalities can refer to a situation in which there’s something wrong with the structure of a chromosome, or the number–chromosomes can be missing or duplicated. Having the wrong number of chromosomes is the most common abnormality usually happens during cell division is the leading cause of miscarriage and is random so you can’t really affect it.

 

A: And that will tell you if the embryos from somebody after all that meant it was about likely and you know, try again, and if it wasn’t if the embryo was good. If it was not due to chromosomal abnormalities, then it’s time to start investigating, even with one chromosomally normal miscarriage.

 

P: Let me just elaborate on what Amy’s saying here. chromosomal abnormality is a normal part of human reproduction. Even at peak fertility experts think that on average chromosomal abnormalities affect roughly 20% of a woman’s eggs. And this percentage increases with the age of the mother for a variety of complicated reasons. There are more chromosomal issues with eggs than sperm, but it’s also the case that an embryo could have a chromosomal anomaly thanks to division of somatic cells or other cells in the body. And then if the embryo was chromosomally normal, that means something else went wrong. And the list of things is not in substantial. creating another person is a really complicated undertaking. And all the hormones have to be right at just the right time. And the endometrium has to be right at just the right time. And the signaling between the lining of the uterus and the embryo has to work appropriately and the immune system has to behave and the list goes on and on. 

 

A: you know So there are women who are older or younger because you know, 25% of early pregnancies and that could be a reason to start IVF if you have bad embryos, they can find the way to do good embryos but if you have common something or miscarriages it’s time to investigate something else because it’s not the embryos, it’s your body in some way that is not holding on to a pregnancy that might be to due to structural problem. And that might be also in my case. Which was due to immune issues, which is a very small subset and one of the reasons I don’t blame necessarily IVF doctors For not specializing because the women who you know, like 3% or something. miscarriages are women who are chronically miscarriage after miscarriage more than two chromosomally normal miscarriage.

 

$$P: Okay, keeping in mind that all this stuff is hard to measure accurately because a lot of people have miscarriages and they didn’t know they’re pregnant. recurrent pregnancy loss describes the experience of having two or more miscarriages according to ACOG. This affects 1% of women and other estimates put it at 3%. These numbers mix those with chromosomal abnormality with other causes, the traditional methods of analyzing the cause of miscarriage or a high failure rate, which is to say that many women don’t find out what went wrong. I interviewed Dr. Pete, a fertility specialist in Episode 68 And he’s the co author of a new approach to investigate the practice of consumption believes he can attain a significantly higher rate of successful analysis. So check that out if you’re interested in this topic.

 

A: I was one of those lucky people. So you know, I had four miscarriages and it took me to find the specialists in the field who are five or six in America who deal with women who have a miscarriage. And IVF industry is actually waking up a little bit to this fact like oh, we have to do immune testing. So there’s ways that doctors can look at they can see, Oh, is there something structurally wrong with your body? Baby not getting enough oxygen? You know, uterus helped it. Is there something structurally going on? Is there a scar tissue? And there’s also a whole field of immunologist who say is your body rejecting the baby?

 

P: So I want to get into this with you more. But interestingly, we’re following the same path here because I had trouble because of immune issues too. But it wasn’t. It wasn’t found out till halfway through the pregnancy when things really kind of tanked for me, 

 

A: Oh wow

 

P: but what was interesting about this and I went through the infertility gauntlet as well and where they’re testing fallopian tubes and uterus, and ovaries and it felt to me like there’s so much that’s unknown, because what if you’re physically fine? Then you’re in the into the vast, open hole of something else is wrong. They just cast you into the pool of, you know, some kind of fertility help. And firstly, just put us into IUI because the story was we don’t something’s wrong with you. We just want to what, let’s try this. This whole process is so complicated. I know it took a long time and a lot of effort, but I’m impressed that your doctors were able to pinpoint your problem at some point.

 

A: I didn’t need IVF at all is the whole thing. 

 

P: Oh, wow. 

 

A: I have found this doctor. And there’s a lot of doctors who will work with you conceiving naturally. I mean, I have a friend who’s pregnant with her second child. She had so many miscarriages so many places that I try to get you know, she went to so many different people and she went to the side who said she had like, like basically antibiotics and infection that was the normal standard, but like six miscarriages you know, so I mean, I think you know, like with endometriosis, it says it takes an average of seven years for a person to get ends and insurances diagnosis, which is crazy. 

 

P: Yeah. that’s a long time

 

A:  so I don’t know like, I think the doctors are doing a lot more immune testing these days. Even though they might not be the rep like I still think the president should go to a specialist and not a regular IVF doctor. But you know if people have I don’t know if you have any idea disorder, like do you have diabetes?

 

P: I have Hashimotos, which I got when I was 19. So Hashimotos is an autoimmune problem where your white blood cells mistakenly attack the thyroid gland, and they can decrease important hormones released by this gland. One hormone called thyroxin or T4 name for it is important in the process of ovulation and low levels or lower levels of T4 can stop the release of an egg or lead to an irregular egg release which can interfere with fertility. If the condition is managed through thyroid hormone replacement, you can eliminate this issue. 

 

When I was going through it, there is just this huge vast space of not knowing this, and everyone’s just kind of thrust through the IV F tunnel which it sounds a little bit like you were as well given that you actually need IVF

 

A: I mean my husband likes to say whenever you when you know when you’re a hammer everything looks like a nail. 

 

P: yeah, Yeah. 

 

A: I do think there’s some like, first of all, anyone you know, and it affected her also say, oh, doesn’t matter if your question letters or diabetes or whatever, lupus or any kind of immune disorder of anything, you know, you should be with someone who’s going to help you. You know, and it could be an actual naturopathic or there’s many routes. It’s not only my way, but it just your system is so delicate that you need help with any kind of immune issue. So yeah, I don’t have I don’t have any diagnosis and I still I can’t really understand my 20 page report. Like my doctor said I had a little bit of everything. I don’t know if I have celiac. I do have the predisposition to gluten sensitivity to celiac I have I think it’s called CDQ gene which is also a marker for immune  issues. I haven’t done the celiac test but I usually am gluten free. I went on to gluten free for my pregnancy. for fertility and her pregnancy and I mostly nothing will happen to me badly. If I eat gluten. I don’t know if I have celiac but I do know a few little things that are markers or immediate issue

 

P: from my understanding because I didn’t go the IVF route but that was you know, threatened with it. It’s really involved and emotional and physically difficult. Was that your experience with it?

 

A: Yeah, I mean, forget that we hit let’s IVF you know when I started this in 2011 in the fall. I didn’t believe that nobody was like it was felt like I was entering this secret world that you had had women standing online at six o’clock in the morning before they went to their Wall Street jobs. And then you talk to people and you’d be like then you find out that all these people had issues, but nobody was talking about in 2011

 

P: wait,  they’re standing online like outside the clinic waiting for it to open or what’s the line for

 

A: some of them…that’s what the line was for because they need their seven o’clock. Appointments. But the lines open. I mean, thankfully, you know COVID I don’t have any good COVID But one of the great things about COVID at least in the fertility world. They schedule appointments now because it used to be like a cattle call. You know, we do monitoring which is check your blood work from seven to 10 am so the people have had to get to work because nobody was telling their bosses. There was no fertility coverage. You know, nobody was telling anybody. So I mean, it’s just so you know, in 2011 it definitely felt like a secret world when I started going through it and writing about it. And so it was it felt like a big secret. And today it doesn’t feel like a secret. It feels like people talk about it, but it’s still so stressful. It’s so it’s so hard on your body taking all the hormones. It’s hard on your relationship, just dealing with all the disappointment. You know, anyone who’s trying to get pregnant for a while whether you’re doing IVF or not, it’s a lot of disappointment. You know, even if you’re trying for a year, that’s two weeks of every month, that’s six months of your life a long time to be like waiting, and then you know, you think of IVF as these three little words. Oh, she’s doing IVF but like, you can’t schedule anything, you can’t travel you can’t see anybody. You can’t make plans and can’t drink. You can’t go to the jacuzzi… So it’s really stressful on your body and on your emotions and on your relationship.

 

P: But why is it so constricting of your time other than like the windows were like, Oh, we I guess I don’t even know what the windows are what like what

 

A: so let’s say you have to go in on the first day of your trip but you don’t know where you’re going. You don’t know when anything you don’t know when your first scene is you don’t know when your third day and you don’t know when your fourth. You’re not supposed to be drinking. Usually I’m not a doctor so I’m not giving any medical information but a lot of people don’t drink and let’s say don’t even do drive thru or whatever because they don’t want to ruin their psychology. You know, marijuana can cause problems documented. So if you’re not drinking, let’s say you go on the first day of your period, they get to go the third day, the fourth day seven you have to plan this around your work. Then you have to see how your body then you’re taking medicine to increase the egg. Whether you’re doing an IUI or an IVF it does add medicine so you don’t know how the medicine might keep you up at night. You might be sleeping, you might be bloated. Then you have to do a retrieval which is like a half a day off because you’re under anesthesia and so you don’t know if you could go away because you don’t know is there going to be on the 14th or the 16th but you have to find out am I doing a transfer Am I can’t bring the embryo back to me and am I gonna rest take it easy those days that I have to wait two weeks or a week and a half to find out if I’m pregnant or not. And then I might be a little bit pregnant

and then I might not I mean I don’t even taking over your entire life.

 

P: Yeah, yeah, that is dramatic. 

 

I’m gonna start my conversation with Amy here. In her book, the training game. She shares an anecdote that illustrates the challenge of living life while on the short IVF leash. She writes, Sal and I were headed to a small college town in the Catskills, where we’d sometimes holed up at a cheap motel in the woods go for hikes by day watch the waterfalls, and drink local wine and beer in the pub is by night. I probably wouldn’t be drinking too much on this trip. Read at all, as we were in the middle of an IVF cycle, but it was still wonderful to have a little break. I promised myself that for the next two days. I wouldn’t talk about IVF about how many follicles were currently colonizing my ovaries. About what kind of side effects I was feeling from the meds. I would spend the days after my transfer so it would result in a better outcome the second time around. No, I wouldn’t fret over my past losses my lost time the embryos on ice, the feeling or itching to start and the life we were yet to begin. I was gonna enjoy the stunning palette of fall foliage, the unseasonably warm weather the vast fresh outdoors and my relatively new husband. I was gonna live in the moment and enjoy our freedom. And then we got the call. Hi, this is Kallie said a woman who I belatedly recognized was calling from my fertility clinic. The doctor would like someone to come back tomorrow. Tomorrow I said so loudly that Solomon clutched the wheel. Tomorrow, she repeated. There’s been some mixup with the results of my latest monitoring and they weren’t check my eggs again to see if perhaps they would trigger me ie give me medication that would force me to ovulate the next day so they could do a retrieval. Tomorrow. I said again, there would be no break. No hiking no motel. No not thinking about IVF the only foliage we were going to see was on the way home. Solomon had already turned the car around even before I hung up. Both knew I was heading back to the fertility clinic the next morning. 

 

To hear how Amy’s story ends. Part two of our conversation will be available next Friday. Thanks for listening. If you liked this episode, feel free to like and subscribe. I appreciate Amy sharing some of the challenges of this experience. I look forward to sharing these inspiring conclusion next week.