Tuesday, May 24, 2016

To the woman who wanted hope, I'm so sorry

We didn't tell her what she wanted to hear. She wanted to hear that there are plenty of cases like hers, that they usually turn out great, that there's nothing to worry about, that everything will be fine. There aren't cases like hers. She would be the eighth documented case, ever, if confirmed. None of the others turned out well.

I hope her doctors are wrong. Not because I know better than them, or because they're incompetent, or because I like to be right. But because, if she truly is that ultra-rare case, it will not end well. I don't wish that on anyone.

I don't take it personally that she claims we're all random idiots making stuff up on the internet. I wouldn't want to believe us, either. I wouldn't want to know that actually, some of the most active members of the group have dedicated their lives to preeclampsia research, attend conferences along with experts in the field, write professional papers, and yes, sometimes even know more than a typical doctor, especially about the extreme rarities of the condition.

I'm sorry hearing the truth felt like a lack of support. I'm sorry our questions and concerns were interpreted as personal attacks on her and her doctors. She left in a huff and blocked us all. I hope she comes back if she needs us. Or better yet, that her doctors are wrong, or that she'll be the ultra-rare case of ultra-rare cases who has a good outcome despite it all.

Sunday, May 8, 2016

Angry Mother's Day

I have a wonderful mother and four wonderful children for whom I'm incredibly grateful. I wish a very happy Mother's Day to all of you who have great mothers and/or children.

As a 4x loss mom who longs for another baby, I know this day can be hard. I wish peace and comfort to all of you who struggle today for any reason.

But today, I am angry.

I've been involved for a number of years in an online support group for women who have or had preeclampsia. This is a peer-to-peer group. We are not doctors, and even if we were we don't have access to medical records. We can't make medical diagnoses or recommendations. We can point women to information and encourage them to ask questions. In the last few days, there have been four women in our group that I am very concerned about, and I question whether they are getting the best care.

All four have or had symptoms that could be HELLP syndrome. One went in under 24 hours from being told by one doctor that she was completely fine to another telling her she had HELLP and there was no hope to save her baby. As I look back on her interaction with the group, she had concerning symptoms as far back as two months ago, but the first doctor repeatedly refused to test her for anything. The second mother has just been admitted and is finally getting a full battery of tests. The third was released after a mere 10 minutes without being tested because her blood pressure, which has been fluctuating for a while, was normal at the time. The fourth is in the military and is dealing with a doctor on a power trip who not only refuses to test her but won't let any other doctor test her, either, and as a member of the military she can't go outside the system for a second opinion.

Pain on the upper right side of the abdomen can have a number of causes. The most dangerous is the liver, aka HELLP syndrome. Yes, it's rare, but a simple blood test can rule it out. Then you can move on to other causes like gall bladder, pulled muscle, and baby pushing against the ribs. Why won't more doctors order the test? Why don't more of them know that HELLP can happen before/without PE and with normal blood pressure? A simple blood test can be the difference between life and death, worry and peace. JUST ORDER IT ALREADY!

Sunday, May 1, 2016

Infertility Awareness Week, Preeclampsia Awareness Month, and Decisions

Last week was Infertility Awareness Week. I know that according to some definitions I would qualify as infertile because of my recurrent pregnancy losses. But then, under some definitions I don't qualify as having recurrent pregnancy losses because, even though I've had four total, I haven't had three in a row. I don't consider myself infertile, however, and I believe in choosing one's own labels. It did get me thinking about the coming months, though.

A year ago, I was pregnant with Declan. Six months ago, I was pregnant with Lucy. After two pregnancies and two losses in under a year, I was physically spent and on the brink of collapse. Papa Runner and I agreed we'd wait at least six months for me to physically recover before we even thought about trying again. That time is rapidly approaching.

Physically, I'm feeling much better and yesterday even completed a half marathon in just a few minutes over my personal best time. Mentally and emotionally I'm in a better place than I've been in a long time, although I know grief can circle around at unexpected moments.

I really don't know what the next year will bring. It could be a long stretch of infertility, which would be hard. It could be another loss, which would be hard. It could be a successful but high risk pregnancy, which would be hard. Or we could decide to continue waiting, even though each month I get a little older and a little higher risk. (I'm already very high risk, what's higher than that?) It's a little daunting to look ahead and see nothing but hard.

My thoughts are scattered today, so random topic jump. Today begins Preeclampsia Awareness Month. I hope by sharing my experience with high risk pregnancy, other women can be aware of their own risks, advocate for the best possible care, be encouraged amidst their own hard, and find healing from trauma. This is not an easy road. I hope someday there will be better screenings, more effective treatments, and maybe even a cure, so no mother or baby will suffer from preeclampsia. That's why my family continues to raise money for the Preeclampsia Foundation through the Promise Walk. This year, my kids decided to write their own fundraising letter, sent it out to 200 people, and have raised over $2500 so far! They are very invested, and love checking every day to see their total go up. Monkey is just $20 from his personal goal. If you feel moved to give, check him out.