Posts Tagged ‘lupus anticoagulant’

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My hematologist, etc

September 10, 2009

I saw the hematologist today and it took him over an hour to see me for what was a two minute consultation. He said I’m fine. Some stuff that was positive before is now negative though he doesn’t know why the change and he said that my miscarriages are not because my clotting issues. He said lovenox is pointless for me. I don’t know if I’m reading too much into this but these are the three areas that still showed up as issues, and his don’t worry about it mantra just isn’t sitting well with me:

MTHFR: This is a gene associated with higher risk of nueral tube defects and miscarriages. I have one mutation (C677t). Dr. F said since its only one mutation not two he’s not concerned. But- there are doctors who recommend lovenox and increasing folic acid and B6 and B12 for one mutation. Plus, Jack could have a MTHFR mutation, which when combined could give me two. He said there are no known ways to treat MTHFR. But, there are! Maybe the effectiveness is in question but there is a protocol.

Factor VIII Activity: Normal is 50-150. I’m 164. He said its okay since this clotting factor rises in pregnancy, except the lab results he gave me say these numbers may be elevated in late pregnancy. I’m hopefully six weeks today so how is this elevated due to pregnancy?

Plasminogen Activity: Normal is 78-130. I’m at 150. He said this nixes the Factor VIII so no worries.

I’m going to talk to my OBGYN about this but Dr. F said he’d tell my doctor I don’t need Lovenox. I strongly disagree and hope she maintains her stance. The veins and arteries the uterus are often microscopic and so clots that would be inconsequential to me would be huge to a growing fetus and if this can save this pregnancy I am taking it.

(The random aside):You might have noticed in my many blog posts about my friends- it seems I’m not having the best of luck. We were having a small dinner at our house on Saturday and four people are bailing TODAY out of eight people. We thought about who we could invite now and could think of no one. While I believe that quality matters in friends, not just quantity it makes me sad that I have no one else I want to invite. I could definitely be part of the community if I wanted but all the girls I know talk about are things I don’t care about and, this is just me, but I don’t feel they are genuine and what’s the point of being friends with people who aren’t sincere. I am sure I have a ton of flaws that people could point out, but one thing I am is a genuine and sincere person. I don’t fake it, and if I care about you and you hurt me I can’t get over it. I’m not sure if its hormones making me weepy, but I just feel sad. I quit facebook because I got tired of the constant birthing announcements and updates on every little thing junior did, but quitting facebook is akin to social suicide these days. I’d like to think a good friendship will survive deactivating facebook but it turns out I have few such friends. Add to that not attending baby showers for about a year- yeah. IF killed my friendships it seems. And today, this makes me sad.

(The self check): After that huge pity party I threw for myself (thank you for attending) I need to get a grip. Susan at sprogblogger does a daily days of grace list on her blog and I think I need to do a similar thing just to help myself get out of my funk, so here goes:

1. Having dinner with Jack at my favorite steakhouse to celebrate my “retirement” from work today.
2. I no longer have to work at my toxic work environment.
3. I can sleep in tomorrow and not feel a lick of guilt.
4. Today, I am six weeks along and as of now, to the best of my knowledge, I am still the P word.

Okay, that helped. Thanks for listening.

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Lovenox *gulp*

August 28, 2009

After my first loss I asked my doctor to run any tests she had to find out why. She was kind of enough to oblige though I’ve heard some docs won’t run these until three or more. While waiting for these results I got pregnant again. She called me 5 weeks into my pregnancy and asked me to take a baby aspirin because I tested positive for lupus anticoagulent and referred me to a maternal fetal specialist to discuss lovenox. He ordered a series of 15 tests on me.  In the meantime I lost that pregnancy. A few days after the loss I learned my lupus anticoagulent was now negative though there were other numbers that were borderline high. She said next time I got pregnant to get lovenox immediately upon a positive test. True to her word as soon as I called in she wrote me a prescription for lovenox.

I waited to fill my appointment until the next day because I had an appointment with a hematologist. He said he didn’t think lovenox was medically necessary for me and that I should wait two weeks for him to run some more tests on me. I asked him why did I test positive for lupus first go around, and then negative the next go around. He said sometimes lupus anticoagulent follows one pregnancy but not another. I asked him if now I was safe in this pregnancy, he said I can’t be certain. So while he said I didn’t need to take lovenox he did say that if my OB  felt I should, I can go ahead and take it. I began leaning towards taking it since the thought of this lupus thing coming and going like an apparition trying to steal my pregnancies freaked me out. But I still hesitated. Dr. F said not necessary and he’s an expert on all things blood. Jack thought I should wait out the two weeks.

After fretting for sometime someone advised me the obvious: ask you OBGYN. The hematolist may be a blood doc but he works with cancer, this is a recurrent pregnancy loss issue, you should trust the people who work with the preggo people. So I e-mailed my OB-GYN last night and she said she wanted me on it on the advice of the maternal fetal specialist.

I’m freaking out now. I am hoping by listing my fears they’ll seem less scary:

1) Lovenox costs $1,000/month. My insurance covered it this go aroud but I’m switching insurance in October because my job ends. What if the new insurance gives me problems?
2) I got a positive pregnancy test TUESDAY at 13dpo. Now its FRIDAY 16dpo. I didn’t start too late did I? I’m so upset that I waited. I should’ve gone with my instinct and just started stabbing myself with the needles as soon as they were ordered. The hematologist just confused me. UGH. It’s always better safe than sorry.

Nope, still scared. Please don’t let it be too late. Please don’t let it be too late.

Anyone have any advice on how to take Lovenox?

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It lies under the surface

August 26, 2009

4am today Jack shook me awake. You were yelling Why?! over and over again, he said with a bewildered expression.  I have no recollection but Jack told me I’ve been having outbursts like this the past few weeks.

I thought I’ve been dealing with my second loss better. I don’t cry daily. I don’t sit and fixate on what happened. I felt relieved that somehow I’d manage to hurt less this go around. Today as I made an appointment I turned a page in my agenda and bug’s u/s picture drifted out and landed in my lap. It’s been a month since I lost bug.  Her presence in my womb while my numbers tanked shocked my doctors, but there it was, a fact I will never forget: My bug was a fighter. She wanted so badly to survive. For the time she lived, she beat the odds.

I keep telling myself not to mourn this loss. Missing bug makes me feel I’m missing a mirage. But apparently subconsciously I am missing bug like crazy. I’ve wondered for some time why I showed my mom the u/s pics when she visited me after my loss. She saw it and burst into tears and kissed the picture holding it close to her chest. I felt a weird sense of relief. Now I think I know why. I think its because I wanted someone else to care. If someone else cared, bug was real, bug mattered.

Today at my hematology appointment the doctor said how far along were you when you lost your two children, I’m sorry, I meant, your babies? I felt like someone jolted me. It took all I had to not to bite my lip from crying, not of sadness necessarily but relief. He got it. He didn’t try to negate my pain with neutral words such as “losses or incidents”. He called them my babies. No one IRL ever called them that before.

Long story short, the hematologist ordered THIRTY different labs on me. He said the current results don’t indicate there is a medical need for lovenox so wanted further testing. The results come back in two weeks. As I was leaving the med tech who drew my blood approached me. Listen, he said, I read your chart. What’s happened to you is horrible. I really hope that whatever is wrong we here will find out and fix it for you.

I’ve been so busy trying to move forward I haven’t really looked back. Yes I’m jolted by grief from time to time but I try not to look at it too deeply. I run, or put on music, or turn on the TV. I’ve learned something today: you can run from the past but it catches up to you, releasing from you like the steam from a volcano. What you hold in will either come out or destroy you from the inside. I’m grateful for being the P word again, and despite the past I remain hopeful and grateful for the opportunity to try again. Still, I will never forget who I lost, and today on this one month anniversary I’m allowing myself a moment to grieve my little fighter.

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Co-existing with infertility

August 16, 2009

Sitting in the doctor’s office after my last miscarriage, Jack on one side of me, the doctor on the other, I felt as if I was part of an intervention. Don’t be so hard on yourself, Jack said shaking his head and patting my hand. Dr. D nodded, In your life when you put your mind to something you’ve accomplished it, but in this matter there’s a lot that’s out of our control. She’s right. Since I was a child, the lessons imparted to me by my parents, teachers, society, was If you work hard enough you can achieve your dreams. And this was true, until now.

In the realm of infertility and pregnancy loss, I can take my Metformin to keep my insulin in check. I can pop the baby aspirin to thin my blood so it won’t strangle a future fetus. I can take the prenatals and make sure I’m eating a balanced baby friendly diet. I can try Clomid. IUI. IVF. I can jump on to lovenox after a positive pregnancy test. I can work as hard as I can and while I should keep my feet moving I have no control over whether any of this will work. This is hard to accept. Perhaps this is why I start sign hunting by checking my boobs, debating the degree of nausea and exhaustion during each two week wait. But sign hunting won’t give me the end result, its just a maddening way to waste two weeks (and in my case often longer) of your life.

Things such as sign hunting and the devastation that follows when you see blood made me think of stepping out of the baby making game for a while until I had my head in the right place emotionally. I told my therapist this thinking he’d agree because if anyone knows how much of a wreck IF has made me, it should be him. I was surprised when he disagreed. You’re in the game and I think you should keep moving, you need to learn to handle the challenges better but I don’t think you will take a time out. I think its an intellectual exercise to debate whether you should or not, you’re too deep in to step back. I think he’s right. I could never stop. The challenge for me is not taking some time off, but learning how to co-exist with my infertility. To walk side by side with this challenge and not let it wear me and turn me into a one dimensional person.

In an effort to co-exist with my IF I decided to focus on things in my control, so I can keep on moving on in this journey but not be paralyzed emotionally while I do so.

No more Sign Hunting. What do I get out of checking my boobs and gauging my levels of exhaustion? If I’m pregnant I am and I’ll find out soon enough. Some people say its good to have your hopes up and be positive. Maybe this works for some, but for me getting my hopes up means they are crushed in a bloody heap at the end of the cycle. Most people get that a miscarriage is sad, but most non-IFers don’t get that the end of a cycle that did not work is heartwrenching too. It is also a loss. I’m not sure how I’m going to succeed here but I’m not googling for signs and symptoms anymore and the goal is to firmly tell myself not to read into things when the urge strikes. If that means chanting a mantra you’re not pregnant, stop it! or Google is not a fortune teller. So be it.

Focus on the things I have control over like . . .

My fitness and nutrition. Exercising burns adrenaline and calms me but when I’m stressed or depressed the last thing I want to do is go for a run. My neighborhood is full of rolling hills and my plan is to stick on the iPod and power walk. I’m also considering yoga. With PCOS losing weight is challenging but its possible. Its time I took greater control.

My hobbies. I love to read. Scrapbook. Try new recipes. Write poetry (of questionable merit).  Instead of imploring Dr. Google to predict my future status of motherhood I will do things I enjoy.

My writing. Though my writing is technically a hobby at the moment since I’m not paid to do it, I have a finished manuscript that I’m revising one last time before submitting to agents. Since the miscarriage issues I’ve neglected it entirely. I need to update my query letters, and pursue this dream.

Reflecting. A dear friend reminded me how important it is  to take advantage of silence and down time to contemplate and reflect. When she first suggested this I wondered what I needed to reflect on or contemplate, but after a few days of plugging out for a few hours from TV, music, cell phone and internet and just taking a walk, or making dinner in silence I saw what she meant. The world comes into sharper focus. I realized its hard to really think clearly when you’re always plugged in. This act of taking time out for silence each day is helping me in ways I could never have anticipated from the simplest areas of appreciating things I never thought to appreciate such as the brilliant orange of a carrot I’m cutting for dinner, the sound of its crispness as I slice through it, the sweet flavor of homegrown tomatoes. Being plugged in, you can end up just doing things by rote and not realizing.  It’s not always easy to co-exist with silence because sometimes thoughts that are unpleasant that I’ve tried running from also make themselves known, but now at least I can begin tackling these thoughts instead of pushing them away, because the truth is, even if we don’t think about things and reflect, they are still there, poking us under the surface, stealing our peace of mind.

My Marriage. Its easy to take Jack for granted. He’s my best friend and he’s always there for me. While I’ve gotten better about dumping all my IF issues on him, I still can’t forget when he said he wanted his wife back. I hope as I try to flesh out the other parts of me that go beyond my desire for motherhood, Jack will see his wife returning. I cannot control all aspects of my marriage but I can control my end of things.

I hope by focusing on the areas of my life I have some measure of control over, I can take away the tunnel vision on IF that has taken over my life. I accept that no matter how much control I take over my life, IF sucks and failed cycles will always hurt, I just hope that I will bounce back faster and not allow IF to take over all of my life. The best I am praying for is it to co-exist with my infertility and not let it wear me as it has for two years.

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The weirdest angst ridden post yet

August 10, 2009

In my previous post I said I planned not to wait for the next cycle before TTC since after miscarriage #1 the time frame until my first cycle was my most normal ovulation cycle ever and I regret not having taken advantage of that. It appears, I may have ovulated. It’s hard to know if its legit since it should only be about CD6 so I’m basing it on EWCM. Maybe after miscarriage it can happen at any time for no reason as the body readjusts to normal. I know its normal to be worried about a third miscarriage due to low progesterone levels, and the clotting disorder, and PCOS, but that’s not why I’m worried if it turns out I get pregnant this month or within the next three months.

I’m worried because there is a wedding on my husband’s side of the family in my city in November and my in-laws, all of them, will be staying with us to attend. I wrote a little about why I’m freaking out about this here, but to put it short, despite having PCOS and irregular periods whenever I saw my in-laws I’d get my period. Something about being around them (or some huge fucked up coincidence) causes me to bleed when they’re around. I had both of my miscarriages while around them. This past time I miscarried I hadn’t seen them since my last miscarriage when I was at their house (almost four months ago). My conundrum sounds silly but feels frightening. If they come in November I could be anywhere from 2 to ten weeks pregnant all within the danger zone and as tough as a third miscarriage will be anyways, to bleed when they come again will be awful beyond words. I mentioned this to Jack. He said he could fly me down to my parents for that weekend but then I’m afraid to be without Jack during the first trimester.

Now I’m seriously considering waiting to TTC until after November so I can be assured I won’t have to see them for a good long while before I conceive. But Speckie was to be born November 3. I’d really been hoping to be pregnant before his due date. This is a stinky place to be. Wanting a baby beyond belief. Wanting to TTC, but wondering if I should not based not on science but a coincidence that has haunted me for years with my in-laws.  It all feels so confusing to me as there is fear in waiting since who knows if I’d get pregnant anyways in these next few months, and fear in trying because if I do I don’t know how I can deal with his family. I mean, its a wedding, they’re coming, I can’t stop them from landing on my front porch. sigh.

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To TTC or not TTC, that is the question

August 8, 2009

The first time we tried to conceive I remember walking around with the satisfaction of knowing we’d conceived. 1 + 2 = 3 after all, right? I’ve since learned, I can’t do math.  Each month we tried and each month found me in the cold morning hours sitting on the tub staring at the HPT begging for that second line, thinking if I could will it, it would appear. It never did, not for 13 months and then on month 14 there it was, the second red line so faint but there. I miscarried ofcourse and planned for another long infertility filled road ahead, and then about 8 weeks after my miscarriage I saw the line again, darker this time, silly me thought that meant this one would stick.

My miscarriage seems over though a beta on August 13 will decide on that definitively and I noticed yesterday the beginning of what appears to be a normal cycle. And I have a confession to make. I cringe  but this blog is the one place I can be honest, so I’m going to be honest: I want to try. Now. This cycle. Getting pregnant is so hard for me that the fact that I got pregnant twice makes me want to try the party trick a third time.

Maybe its the latent addict within me. Fucking hell if those positive pregnancy tests are not the most beautiful thing that technology has ever created. I keep all my positive tests and when pregnant they lay on my table and I walk by from time to time just to marvel at the most beautiful line that ever existed. Damn I want to see that line again. Damn I really don’t want to have to wait.

I’ve done my research and it seems that doctors typically want you to wait a cycle because then they can figure out when your due date is, but with me we always have to determine via ultrasound. It seems my issue is clotting which my doctor has already set up a protocol for next time I’m pregnant, and I’ve decided that I would not try to conceive after cycle day 20 because I’ve heard that egg quality worsens upon late ovulation. Considering each time I ovulated it was past CD24 the odds of me conceiving even if I were to TTC now are slim to none because like I said, I refuse to TTC anymore on late ovulations if that means an increased risk of miscarriage.

But- what if this time I ovulated a bit earlier? What if the EWCM is glorious? Right after miscarriage 1, two weeks after my HCG went to zero I had an ontime ovulation. It felt amazing to have a normal cycle and sometimes I really regret ignoring Jack’s urging to go ahead and try. Maybe we’d have had a nice perky egg, maybe it would have made all the difference.  I don’t know. I could never be sure.

So that’s where I am right now, playing tug of war with my heart and mind. I wish there was an easy answer, a simple solution. Perhaps my PCOS and its nonovulating nature will take care of the answer for me but for now I remain the idiotic optimistic deigning to think I may ovulate and deigning to think I have any say on matters of my own conception.

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Clomid. Progesterone. Bloodwork. Oh My!

August 5, 2009

My doctor called today with the results of the panel of tests my maternal fetal specialist ordered to investigate my lupus anticoagulant disorder. The results were funky. The lupus anticoagulant test came back normal which confused my doctor and me. Her theory is that either I’m borderline and the test got me on a good day, or the aspirin is helping fix that issue. Four tests came back bad and I wish I knew the names but they were so convoluted I got confused, however those four clotting disorders that were present increase the risk of miscarriage. My next step is to see a hematologist and go over the results with them and see if they recommend anything above and beyond lovenox or heparin and if this will affect me beyond just getting and staying pregnant. She can’t refer me to a hematologist since I’m no longer pregnant so now I get to go through some insurance fun to figure out my recommendation. Fun times!

As much as I know I should avoid Dr. Google, he’s just always there for me. I’ve been doing some research on the link between PCOS and low progesterone and the results seem to be mixed. Some say that PCOS causes low progesterone which can cause miscarriages. Some say this theory is rubbish. My progesterone levels at 5 weeks pregnant were 9.5 which my doctor said was low. However, the question is: Did the low progesterone cause the miscarriage, or was the pregnancy doomed hence the progesterone low? The reason I’m researching is because I’m considering taking Clomid next cycle. Until now I’ve gotten pregnant twice on Metformin alone but my ovulations happened on crazy cycle days like CD29 and CD40. To be effective progesterone supplements must be taken immediately upon ovulation. Clomid would help us predict ovulation and thus when to take progesterone supplements. So my goal with Clomid is to be able to time my progesterone supplements.

In my OB’s opinion she didn’t think progesterone supplements did anything but it never hurts to take them so she fully supports a Clomid/progesterone cycle if it will ease my worries. She encouraged me to talk to the RE in September to get a more informed opinion.

I’m already taking more pills than an 84 year old grandmother so the thought of adding more pills if I don’t have to is causing me confusion. There are side effects to clomid I’ve read such as decreased EWCM and occasional implantation issues, so if I dont have to take it then I don’t want to [though my ovulation is so unpredictable there is a huge thought of comfort that with Clomid at least I’d most likely ovulate]. I’m just so confused about whether or not progesterone does in fact save pregnancies, or if my issue is just the clotting issue which lovenox could resolve.

Have you used Clomid? Or had low progesterone but successful pregnancies via Lovenox? Any thoughts or advice on any of this that you might have would be much appreciated.

**And by the way- My boobs are aching. I feel ready to sleep at 9pm and have to drag myself out at 8am. I have waves of nausea! Is this normal post-miscarriage? I thought all this stuff should be going away, not to mention I didn’t have them when I was actually pregnant!