About a week later my MFM doctor called.
I happened to be meeting some new friends at starbucks – right after they asked me if we had kids. This was also Noah’s birthday anniversary – needless to say, I was a mess. These poor people whom I had never met – I’m crying in the middle of starbucks trying to tell them our story and the phone rings.
I excused myself and it was her, my MFM doctor. She said, “okay, we’ve got your results back and I want to explain them to you. (Of course, at this point I know it’s not great news because she called and not her nurse, ha). Please hear this, everything I say does not pull the plug on a future pregnancy – it just gives us a path towards a healthy pregnancy. Okay, let’s start with the antibodies – we see that your body is developing antigen, but we need to retest for these to see what kind of antigen your body is developing antibodies for. Even if your husband has this antigen, we can work around it. (Okay, phew, one thing down) Okay, next let’s talk about the clotting disorders – I tested you for a clotting disorder called, Antiphospholipid Antibody Syndrome and it came back positive. I also tested you for Lupus and some of those tests came back positive. Again, remember, non of this means a no-go for a pregnancy but it does point us to the cause of your HELLP syndrome – a smoking gun, if you will. So this is kind of good news – we have a cause and it can be treated with blood thinners. But moving forward, we will need to have you retested to confirm this.” (Okay, woah, that’s a lot to take in all at the same time!)
And I said to her, so you're sure we can try again for a baby - "most certainly."
I’m pretty sure I had no idea how to respond.. but truthfully and full heartedly, I am grateful to her and her passion for helping women and families like me who don’t have an easy road to parenthood. And that’s what I said. I am forever grateful to her that she is knowledgeable and passionate to help me. She held our fate, our future, our babies in her hands. And to boot, she is SO SO confident in our ability to have a healthy baby – so I hung up feeling pretty good – despite the somewhat life altering news.
So, a few days later, I went back to have more blood drawn. And about a week later the results came back – basically the same. The system of doctor’s I belong to allows patients to review some of their lab results – so once they hit my online chart, I began trying to analyze them myself. That was kind of a mistake – I had diagnosed myself with Lupus.. I was pretty sure that what she would tell me when we met the next time.
And about a week after that, we met with our MFM doctor again. She started by talking about the antibody/antigen. She was funny, “Okay so you have a very rare antibody developing in your body – so rare, I had to look it up. It’s called MI(a). Again, it’s rare. And apparently derives from Asia, specifically Thailand. Are you Thai, she said jokingly? She continued, this really only means something if you, looking at my husband, have the antigen. Are you Thai? She said looking at him – obviously not (he's a red headed, white man). So you’ll have to get tested for this rare antigen. Okay, on to the clotting disorder. Antiphosophlipid Antibody Syndrome. You definitely have this and it will result, when you’re pregnant again, you’ll have to have a daily blood thinner injection – it might be twice daily depending on your insurance. It’s not going to be pleasant, but but just don’t show anyone your stomach – you’ll be bruised. We’re going to get you through the first trimester and then start you on the shots. The doctors/nurses with your regular doctor will show you how to go about doing this.
Okay, for the Lupus, your blood work comes back wishy-washy. Some of it points to lupus, particularly coupled with your event (HELLP) but I’m not a rheumatologist, that’s not my specialty, so I’m going to have you meet with one. They may or may not diagnose you because you’re not symptomatic – so we’ll just have to see what they say.”
She is just a very pleasant doctor to be with – she’s funny and down to earth. I know when I talk with her, she’s telling me the truth and does really have my best interest at heart. There is not a doubt in my mind that if we shouldn’t try again for another baby that she would have told us that – and well, she’s got nothing to gain from it anyways – I’m going to be seeing my regular doctors and everything – maybe an occasional visit with her but it’s not like she’s going to get my insurance money when I have a kid.
So off we went – my husband got his ONE tube of blood drawn (it came back negative).
A few weeks later (October 16), I met with the rheumatologist. It was a little weird because he too (along with all of my other doctors to this point) re-diagnosed me with HELLP.
I’m sorry people but haven’t we already come to that conclusion like 6 months ago! Time to move forward, haha.
So we’re together for like an hour – he briefly listened to my lungs and looked at my hands and I believe he felt my knees but otherwise we pretty much talked. He talked more about APS and it’s similarities to Lupus – how they can be treated with the same prescription, etc. And because I’m not symptomatic, he wasn’t going to diagnose me with Lupus but was going to prescribe the anticoagulant to help my APS. He also mentioned that he wanted me to travel all the way to DUKE to meet with a different rheumatologist who specializes in rheumatology and pregnancy. But first he was going to talk to her on the phone.
Honestly, I was not too thrilled about going all the way there just for a quick appointment that he could do on my behalf over the phone or he could work closely with my MFM doctor. So, while I did entertain his notion, there wasn’t a chance that I’d be going there.
So by the end of the appointment (another hour long doctor visit), he sent me off to the lab for MORE blood work. Honestly, I have no idea what he was testing for – and after he called me with my results, I still don’t know. That was probably a waste of money and time. Oh well.
I happened to be meeting some new friends at starbucks – right after they asked me if we had kids. This was also Noah’s birthday anniversary – needless to say, I was a mess. These poor people whom I had never met – I’m crying in the middle of starbucks trying to tell them our story and the phone rings.
I excused myself and it was her, my MFM doctor. She said, “okay, we’ve got your results back and I want to explain them to you. (Of course, at this point I know it’s not great news because she called and not her nurse, ha). Please hear this, everything I say does not pull the plug on a future pregnancy – it just gives us a path towards a healthy pregnancy. Okay, let’s start with the antibodies – we see that your body is developing antigen, but we need to retest for these to see what kind of antigen your body is developing antibodies for. Even if your husband has this antigen, we can work around it. (Okay, phew, one thing down) Okay, next let’s talk about the clotting disorders – I tested you for a clotting disorder called, Antiphospholipid Antibody Syndrome and it came back positive. I also tested you for Lupus and some of those tests came back positive. Again, remember, non of this means a no-go for a pregnancy but it does point us to the cause of your HELLP syndrome – a smoking gun, if you will. So this is kind of good news – we have a cause and it can be treated with blood thinners. But moving forward, we will need to have you retested to confirm this.” (Okay, woah, that’s a lot to take in all at the same time!)
And I said to her, so you're sure we can try again for a baby - "most certainly."
I’m pretty sure I had no idea how to respond.. but truthfully and full heartedly, I am grateful to her and her passion for helping women and families like me who don’t have an easy road to parenthood. And that’s what I said. I am forever grateful to her that she is knowledgeable and passionate to help me. She held our fate, our future, our babies in her hands. And to boot, she is SO SO confident in our ability to have a healthy baby – so I hung up feeling pretty good – despite the somewhat life altering news.
So, a few days later, I went back to have more blood drawn. And about a week later the results came back – basically the same. The system of doctor’s I belong to allows patients to review some of their lab results – so once they hit my online chart, I began trying to analyze them myself. That was kind of a mistake – I had diagnosed myself with Lupus.. I was pretty sure that what she would tell me when we met the next time.
And about a week after that, we met with our MFM doctor again. She started by talking about the antibody/antigen. She was funny, “Okay so you have a very rare antibody developing in your body – so rare, I had to look it up. It’s called MI(a). Again, it’s rare. And apparently derives from Asia, specifically Thailand. Are you Thai, she said jokingly? She continued, this really only means something if you, looking at my husband, have the antigen. Are you Thai? She said looking at him – obviously not (he's a red headed, white man). So you’ll have to get tested for this rare antigen. Okay, on to the clotting disorder. Antiphosophlipid Antibody Syndrome. You definitely have this and it will result, when you’re pregnant again, you’ll have to have a daily blood thinner injection – it might be twice daily depending on your insurance. It’s not going to be pleasant, but but just don’t show anyone your stomach – you’ll be bruised. We’re going to get you through the first trimester and then start you on the shots. The doctors/nurses with your regular doctor will show you how to go about doing this.
Okay, for the Lupus, your blood work comes back wishy-washy. Some of it points to lupus, particularly coupled with your event (HELLP) but I’m not a rheumatologist, that’s not my specialty, so I’m going to have you meet with one. They may or may not diagnose you because you’re not symptomatic – so we’ll just have to see what they say.”
She is just a very pleasant doctor to be with – she’s funny and down to earth. I know when I talk with her, she’s telling me the truth and does really have my best interest at heart. There is not a doubt in my mind that if we shouldn’t try again for another baby that she would have told us that – and well, she’s got nothing to gain from it anyways – I’m going to be seeing my regular doctors and everything – maybe an occasional visit with her but it’s not like she’s going to get my insurance money when I have a kid.
So off we went – my husband got his ONE tube of blood drawn (it came back negative).
A few weeks later (October 16), I met with the rheumatologist. It was a little weird because he too (along with all of my other doctors to this point) re-diagnosed me with HELLP.
I’m sorry people but haven’t we already come to that conclusion like 6 months ago! Time to move forward, haha.
So we’re together for like an hour – he briefly listened to my lungs and looked at my hands and I believe he felt my knees but otherwise we pretty much talked. He talked more about APS and it’s similarities to Lupus – how they can be treated with the same prescription, etc. And because I’m not symptomatic, he wasn’t going to diagnose me with Lupus but was going to prescribe the anticoagulant to help my APS. He also mentioned that he wanted me to travel all the way to DUKE to meet with a different rheumatologist who specializes in rheumatology and pregnancy. But first he was going to talk to her on the phone.
Honestly, I was not too thrilled about going all the way there just for a quick appointment that he could do on my behalf over the phone or he could work closely with my MFM doctor. So, while I did entertain his notion, there wasn’t a chance that I’d be going there.
So by the end of the appointment (another hour long doctor visit), he sent me off to the lab for MORE blood work. Honestly, I have no idea what he was testing for – and after he called me with my results, I still don’t know. That was probably a waste of money and time. Oh well.