Today was my first appointment post-diagnosis. When I met with Dr. M. (the doctor of maternal fetal medicine) three weeks ago, I was told that in order to truly get a diagnosis, I needed to test positive twice at least twelve weeks apart. So, today was meant to be that second test.
I worked from home today, since the appointment was in the middle of the day and there was a winter weather advisory (that ended up being nothing, as always). I called in to my first meeting at 9:00, told my boss what he needed to know from me for the 11:00 meeting I was going to miss, checked some emails, and then left for the appointment at 11:30. We waited roughly five minutes before a nurse came to get us. She told us in the hallway that Dr. D. (the OB/GYN) had just looked over my chart and realized that the test we needed could only be done in the lab. *sigh* I had waited for this appointment for weeks, counted down the days, hoping that this would be the day they would give us the all clear to try again. Thankfully, the doctor walked by during this conversation with the nurse and I said, "That's fine, but I still have questions for you." He said, "Okay, then! Let's go to my office."
We sat down at his desk, and I opened my notebook that I'd been writing questions in for the last couple weeks. Fourteen in total:
1. Is it dangerous to try again?
2. Have you worked with patients with this condition before?
3. Are both Aspirin and the blood thinner injections necessary?
4. What is the success rate? What are the chances of losing another one?
5. What are the potential risks and complications during pregnancy?
6. Are there additional risks during delivery?
7. Will I need a hematologist on top of everything else?
8. Should I start the Aspirin now?
9. What happens if I miss a shot?
10. Are the shots covered by insurance?
11. How frequent will my check-ups/ultrasounds be with future pregnancies?
12. Did my age have any effect on this?
13. Will I need a C-section/induction?
14. Should I continue the blood pressure medication?
And he answered them all. Now that we know what caused the loss, no it is not dangerous to get pregnant again. He said this confidently, without hesitation. Put us at ease immediately. While he was answering that question, he answered the second one. Yes, he's worked with people with this condition. Many times. And, the course of action that they are choosing for me is the Aspirin combined with the blood thinners. Seems to be a common treatment for this.
The success rate is high, but my chances of losing another one are still dramatically higher than the average person. There are no added risks with the blood thinners, but I will be very closely monitored for pre-eclampsia and delayed fetal growth, because those were the major issues during the last one. That risk will not change. And it sounds like there are not too many risks during delivery either. Four weeks before my due date, they will change me to a different blood thinner that will be out of my system sooner so that if I need to be induced or get a C-section bleeding won't be an issue. He said he has never had a problem with any of his patients before. Another reassuring statement.
I do not need a hematologist, but he said it couldn't hurt if it puts my mind at ease. And I can start the Aspirin now if I want to, but it's not necessary. It won't hurt anything if I do. He wouldn't answer the question about missing the shot. That conversation went something like this:
K-"What happens if I miss a shot?"
Dr.-"Don't."
K-"Well, I mean people miss medications."
Dr.-"People forget to take pills. No one forgets to take an injection. Even diabetics remember."
K-"Okay, but what if I do?"
Dr.-"Why would you?"
K-"Because I don't like needles."
Dr.-"Then I can't work with you!!"
This was said tongue-in-cheek with his usual sense of humor, and although he didn't directly answer the question, the message was clear: don't miss your injection. And yes, they should be covered by insurance. If they're not, we will fight "tooth and nail" to get it covered.
I'm still a bit confused about the frequency of check-ups, but it sounds like my OB/GYN check-ups will proceed as normal until 32 weeks, but that ultrasound appointments will be more frequent. And then, I will be seen probably twice a week. I feel bad for my boss already for all the time I will need off, but such is life.
He didn't seem to quite understand what I meant about my age effecting things and I guess I didn't either, but it doesn't matter anyway. It was a hypothetical question and it could only have made us upset if the answer was "yes," so I let that one go. I didn't ask about the C-section/induction directly because it was addressed. It seems I won't need either of those things. They hope for the best, as always. And, for the last question, I'm to meet with my GP again (*sigh*) and have them switch my medications. I'm so tired of doctors.
Thankfully, the lab for the blood testing is not one that requires an appointment, and there was one a mile from where we were. So, we stopped there afterwards to get the blood drawn. I came prepared this time, because the first time I had a major blood draw, I didn't know how much they'd be taking. I almost passed out, turned ghost-white according to the nurse, and needed some sugar stat! This time, I came equipped with a bottle of water and a Reese's peanut butter egg (yay for early Easter candy!). I sipped my water while she took the blood and told me all about her spoiled cat. I made sure to let her know that I was freaked out and asked her to talk to me about cats. She was very nice, very cool about it, and kept asking me if I was okay. I did get clammy, I did get hot, I did get worried, but it was all okay. I sat in the waiting room for a few minutes before leaving getting my bearings back and chomping on my Reese's egg. Going out into the below-freezing weather helped lose the sweats.
Now we wait some more. We wait for the results and for that call from Dr. D. letting us know what they say. But, we are all expecting them to be positive. But, before we left his office, he asked, "so, when are we trying again?!" I answered, "whenever you tell us we're allowed." He said, we got the test, I started my cycle again, and we have a plan. And even though we haven't gotten the official confirmation yet, I told him I'd like to proceed as if it's positive. So, we are good to go. All clear. All systems go. And I'm terrified.
Monday, January 21, 2019
Saturday, January 5, 2019
Answers
It's been a rough couple of days in our house. Since the loss of our baby in October, we've been playing a lot of the waiting game and asking a lot of questions, trying to figure out what happened. It was looking more and more like a "fluke" and simply a bad placenta, but an appointment this past Tuesday turned up some results.
It turns out, while I was in the hospital, they ran a slew of blood tests on me, checking for many different things. One of these tests was for a condition called antiphospholipid antibody syndrome. It's an autoimmune disease, meaning that my white blood cells, instead of attacking dangerous bacteria, attack my own body. So, the assumption is that they attacked the placenta. This disease is known to cause blood clots and is found often in women who experience multiple miscarriages or late-term miscarriages. Somehow, I've lived 33.5 years without ever knowing I have this, or showing a single symptom until pregnancy.
What this means is that, without treatment, it will be very difficult, if not impossible, for me to carry a baby to full-term. What the treatments consist of would be low-dose aspirin and blood thinner injections from day one of any pregnancies until delivery, and probably a few weeks postpartum. You are talking to a person who has cancelled doctor's appointments because they wanted to draw blood or give me a shot, so this is not great news. I was initially optimistic, thinking that's a small price to pay to have the family I've always dreamed of. And then, I started researching and joining Facebook groups, and Googling, etc. And I'm not feeling terribly awesome about it. There is a chance this won't happen for me. There is a chance I will never have this baby that I have spent my entire life planning for. Every decision I've ever made in my life was to get me to a place where I would fell comfortable bringing a child into the world. And to find out that might not actually happen is beyond devastating. And while this condition isn't a death sentence and certainly doesn't mean a family is impossible, it's not going to be an easy road. I will likely lose more babies. It will be physically and emotionally painful. Due to the nature of the blood thinners, an epidural during delivery may not be possible, as it causes blood clots in the spine and may cause permanent paralysis. One thing is certain: carrying and delivering a child would be dangerous for me. On top of this, I have been told that I can no longer take hormonal contraception due to the risk of blood clots. So, not only is getting pregnant dangerous, but so is preventing it.
I'm scared. I'm incredibly sad. I'm angrier than I've ever been. I'm depressed. But, underneath all of that, I'm still the fighter I've always been. I'm still willing to look for answers. I'm still willing to learn as much about this as I can. I'm still willing to do what I have to do to have my family. And if carrying my own is not in the cards, other options are not off the table. I'm exhausted from being strong all the time. I'm just tired. I want someone else to do it for me, to take the burdens, to take the pain, to take the weight. But, no one else can. I know this journey will be the most difficult thing I've ever had to do, but when I eventually look into the eyes of my child and hold them in my arms for the first time, it will be worth every painful injection, ever single tear that was cried, every broken heart, and every difficult day that was endured to get there. For now, I'm not done being angry. For now, I'm not done feeling sorry for myself and hating those who so easily had a nice, healthy baby without even trying. I'm not done hating people who did nothing to deserve the healthy family they have. But, eventually, something good will come out of this. Until then, I continue gathering information and preparing my body for the next try. And I build a kick-ass medical team to help me someday realize my dream of being a mama.
For those of you who effortlessly built your family, don't take a second for granted. Look at your child and know how lucky they are to exist, how lucky you were to be able to carry them, to hold them, to love them, to bring them into this world. I never, in a million years, imagined this would be my journey, but here I am.
It turns out, while I was in the hospital, they ran a slew of blood tests on me, checking for many different things. One of these tests was for a condition called antiphospholipid antibody syndrome. It's an autoimmune disease, meaning that my white blood cells, instead of attacking dangerous bacteria, attack my own body. So, the assumption is that they attacked the placenta. This disease is known to cause blood clots and is found often in women who experience multiple miscarriages or late-term miscarriages. Somehow, I've lived 33.5 years without ever knowing I have this, or showing a single symptom until pregnancy.
What this means is that, without treatment, it will be very difficult, if not impossible, for me to carry a baby to full-term. What the treatments consist of would be low-dose aspirin and blood thinner injections from day one of any pregnancies until delivery, and probably a few weeks postpartum. You are talking to a person who has cancelled doctor's appointments because they wanted to draw blood or give me a shot, so this is not great news. I was initially optimistic, thinking that's a small price to pay to have the family I've always dreamed of. And then, I started researching and joining Facebook groups, and Googling, etc. And I'm not feeling terribly awesome about it. There is a chance this won't happen for me. There is a chance I will never have this baby that I have spent my entire life planning for. Every decision I've ever made in my life was to get me to a place where I would fell comfortable bringing a child into the world. And to find out that might not actually happen is beyond devastating. And while this condition isn't a death sentence and certainly doesn't mean a family is impossible, it's not going to be an easy road. I will likely lose more babies. It will be physically and emotionally painful. Due to the nature of the blood thinners, an epidural during delivery may not be possible, as it causes blood clots in the spine and may cause permanent paralysis. One thing is certain: carrying and delivering a child would be dangerous for me. On top of this, I have been told that I can no longer take hormonal contraception due to the risk of blood clots. So, not only is getting pregnant dangerous, but so is preventing it.
I'm scared. I'm incredibly sad. I'm angrier than I've ever been. I'm depressed. But, underneath all of that, I'm still the fighter I've always been. I'm still willing to look for answers. I'm still willing to learn as much about this as I can. I'm still willing to do what I have to do to have my family. And if carrying my own is not in the cards, other options are not off the table. I'm exhausted from being strong all the time. I'm just tired. I want someone else to do it for me, to take the burdens, to take the pain, to take the weight. But, no one else can. I know this journey will be the most difficult thing I've ever had to do, but when I eventually look into the eyes of my child and hold them in my arms for the first time, it will be worth every painful injection, ever single tear that was cried, every broken heart, and every difficult day that was endured to get there. For now, I'm not done being angry. For now, I'm not done feeling sorry for myself and hating those who so easily had a nice, healthy baby without even trying. I'm not done hating people who did nothing to deserve the healthy family they have. But, eventually, something good will come out of this. Until then, I continue gathering information and preparing my body for the next try. And I build a kick-ass medical team to help me someday realize my dream of being a mama.
For those of you who effortlessly built your family, don't take a second for granted. Look at your child and know how lucky they are to exist, how lucky you were to be able to carry them, to hold them, to love them, to bring them into this world. I never, in a million years, imagined this would be my journey, but here I am.
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