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.

Wednesday, February 10, 2016


Something I love: RESEARCH!

Two years ago today I was on my way to the University of Vermont to participate in a study on preeclampsia. I had a pre-pregnancy visit during which they ran a whole bunch of physiological tests and labs. The intention was to come back mid-pregnancy to run the tests again, but unfortunately I didn't make it that far. Still, it was exciting to see what is being done. They are looking for biological markers that can be used for screening patients. Right now we have little way to know who will and won't get sick. The earlier we can identify potential victims, the better we can manage them to a good outcome.

My husband, children, sister, and I also sent in DNA samples for another study looking for genetic factors. Preeclampsia is multi-causal, but at least some cases are thought to be genetic. Some of these are due to the mother's genes, some to the father's, and some to a mismatch between the two. They have already identified several dozen genes they think are involved. (Wow, this condition is complicated.)

I'm registered with the Preeclampsia Registry, which makes anonymous data available to researchers and will also contact eligible women if a study should come up that they can participate in. I encourage all survivors to register, along with their close family members, including those who have not experienced PE as comparisons.

There are current studies for a treatment to prolong pregnancies with a very early diagnosis (PRESERVE-1), for long-term health effects on survivors (HH4M), and developing better ways to educate pregnant women (must be registered with the Preeclampsia Registry for this one).

I feel very strongly about research not just for my sake but for my daughters and future daughter-in-law, who will all be at greater risk for PE because I had it.

Something I don't love: Media presentation of research.

In the last few weeks, two studies have made the news with very misleading headlines. One declared that a new treatment for PE has been discovered. On closer examination, you find a medication that has already been shown to be ineffective at treating PE, but a chemical compound in it reversed blood vessel damage in petri dishes. It will be years, possibly decades, of research before this discovery is turned into any kind of viable treatment, if ever.

The second declared that eating chocolate cures PE. IF ONLY! Turns out the title of the study was "High-flavanol chocolate to improve placental function and to decrease the risk of preeclampsia." As in, "We're going to study high flavanol chocolate to see if it improves placental function etc." Conclusion: it didn't. But the press interpreted the title as "We found that high-flavanol chocolate can be used to improve etc." Reading the full professional article reveals a poorly designed study to begin with, resulting in essentially useless data. But hey, you can eat chocolate, right?

I was lucky to have a fantastic psychology professor who taught me to critically analyze articles like these, but I've seen the pain when women get their hopes up and then dashed, or feel guilty for not doing enough. Yay for research, boo for junk reporting.

Saturday, February 6, 2016

Grief circles around

Grief is an unpredictable beast. There are stages, but they aren't linear. Even when you get to acceptance it can circle back around. When Declan died, I immediately jumped to the anger stage. I couldn't sleep unless I worked myself to exhaustion. I started running just a week after the loss and put in 100 miles that month. Running was therapy, and I did a lot of it, logging 300 miles in just over 3 months when I was surprised to discover I was pregnant again. That's when I realized I just couldn't go another mile and took a long break.

Then when Lucy died, too, I was completely depleted physically, mentally, emotionally, and spiritually. I'm not sure how I made it through the last few weeks of school, but I was on the brink of collapse at the start of Christmas break. I was definitely in the denial stage; I was too tired to even think about my losses.

I'm finally starting to feel physically recovered. So of course, it's time to move out of denial. This week my grief hit me hard again. I'm feeling very raw.

I started running a little at the beginning of the year. For today's 10 mile long run, I really pushed myself. Harder than I should have. I just couldn't slow down, or I might collapse into tears and not be able to get going again.

Tonight our church has a special worship service. I fully expect to cry through most of it. After my first two losses, I used to try to fight back my tears. Now I let them out. This is where I am right now, and I don't feel the need to hide it.

Sunday, January 31, 2016

Looking for Survivor Stories

Last year's crew
The Chicago Promise Walk is 15 weeks away. The extended Runner family is once again training hard and hopes for a good showing. You can donate to our team here. As I train for this and also another marathon, I'd like to revive Survivor Saturdays. If the course of your pregnancy, birth, and/or post partum was altered by preeclampsia or a related condition, I would like to share your story. It doesn't matter how dramatic or "routine," you are a sister survivor. I hope to find 15 stories to feature, and my weekend training run will be dedicated to you and your baby. Stories can be submitted to whatyourunningfor@gmail.com.

Sunday, January 10, 2016

Alyssa's Story

I haven't done a Survivor Saturday in a while, but Alyssa found my blog and wanted to share her story as well. I ran six miles yesterday in her honor and in memory of baby Mack. If anyone else would like to share a story, I would love to hear it and run in your honor as well.

Alyssa's Story

My husband and I are high school sweethearts. We played by the rules... date, finish college, engaged, married, enjoy marriage for a year or two, grad school, big girl job, BABY. Well every went perfectly according to my Type A personality plan except for the Baby part. We started trying thinking it may take a few months since I had been on birth control for several years. Well that turned into a year and a half and a fertility specialist. Being emotionally exhausted we decided one more try with meds before IVF. Well that month was our month! We found out we were expecting Memorial Day 2015.

During my pregnancy I thought I was having a normal wonderful pregnancy, looking back now there were some issues from the beginning.

At about 6 weeks I had a pretty good bleed, I knew the pregnancy was over, I just knew it. Well to my surprise we went in the next day and there he was with a perfect tiny little heart beat. I had what they called a "moderate" sized implantation tear and was on pelvic rest for 5 weeks.

After that hurdle was over, I was feeling good. No nausea, no extreme fatigue, just a few minor headaches occasionally. I'm a pretty active person so wanted to be sure I was clear to continue exercising and playing tennis. When I would play tennis I would occasionally get sharp pains in my bladder. I am a nurse practitioner so after doing a urine on myself I called to tell them I had a UTI. It was treated and the pains improved. But a week or so after that episode it happened again, this time no bacteria in my urine but it hurt with every step I took. I went in but my OB wasn't in so I saw the Nurse Practitioner. She went ahead and treated for UTI. I remember mentioning that my stomach would get tight at the top sometimes but I just thought that was him moving around. Looking back, I'm pretty sure these were contractions. So I just chalked this up to I have a sensitive bladder or maybe he is just super low pressing on my bladder, or this was just normal and I didn't know what to expect. Either way the pregnancy seemed to be sailing right along pretty smoothly. Until...

Right before our 26 week appointment we went to dinner with some friends. We sat at a pub table and my feet were dangling most of the night. I could literally feel them swelling as we sat but I didn't want to be a complainer and I sure didn't want to be that pregnant person that was so swollen. We made it home and my poor legs and feet looked like elephants. That should have been my sign (sudden edema) something wasn't right but I had an appointment the next week and they seemed to stay down as long as I kept them elevated. At my 26 week appt. my blood pressure was elevated and I mentioned the swelling. She asked about visual disturbances and I said no. Well looking back I had seen spots a time or two before hand that lasted a few seconds but it didn't register that it should be alarming, again assuming just part of pregnancy. As a nurse practitioner I didn't think the pressure was that high, but apparently in pregnancy its more of the increase from baseline than the actual number. She ordered home monitoring through the weekend and 24 hour urine for Monday.

I took it easy over the weekend and my BP remained elevated but never over 150 and never over 100 diastolic. I had another episode of seeing spots so mentioned it to her on Monday's visit. After looking at the home readings she decided bed rest was our plan but she wanted me to go to L& D to be monitored before driving an hour and a half home. Well we get all hooked up and a few minutes later the nurse comes in: Did you know you were having contractions? Um well no! Well you are about every three minutes.

Now I'm freaking out, my husband isn't here, I'm only 27 weeks, and he only weight 1lb 12oz at the last ultrasound! This can not happen. I was started on Procardia. It seemed to be working. My husband arrived and we were all able to breathe a little. My OB came in and said I did have protein in the urine but it was mild. She said if we could keep contractions at bay and BP controlled with meds we could do bed rest at home.

No activity through the night and looking better on Tuesday. Our plan was to go home Wednesday.
Again here goes that plan out the window. The contractions started back this time stronger and more frequently. I was given three injections none of which worked. Labs revealed that the Procardia was just masking the problem, I was developing HELLP! Thankfully my OB had enough sense to give my first steroid dose for the baby's lungs in her clinic that day and I would have time to get the second one in also. I was started on Mag but our only option was to deliver at 27 weeks 4 days.
I can't even describe the fear of knowing you are about to deliver a not even 2lb baby! We prayed and prayed and prayed.

Mack Thomas was born on November 4th 2015 at 2:30pm by Csection. He had the tiniest little cry. I was able to touch his little hand before he was off to the NICU. He was so strong, never even had to be intubated! I couldn't believe it. I don't remember any thing from recovery until I woke up the next morning. I was dying to see him. They took me off the Mag and back on oral meds. It was all such a blur that Mommy mode kicked in and I was no longer concerned about myself, my BP or my labs. Looking back on it now, I didn't realize how serious and life threatening these conditions could be. I ended up staying in the hospital for a total of nine days due to labs and BP not trending down. But everyone including GI kept saying you just don't match your labwork, you feel too good and are getting around too good. After being put back on fluids and steroids I was discharged home, but we knew Mack had a long way to go.

He was the rock star of the NICU, graduating from CPAP to regular oxygen in just a few days. He was tolerating feedings through his tube well (too small to have suck/swallow reflex). I was honestly amazed by my tiny baby boy. I was able to hold him a few times and we were making arrangements for long term stay an hour and a half from home. This was going to be our new normal for a while, whatever this little boy needed.

Again here goes my plan, we got the call on Day 13 of his NICU stay that he had a spontaneous pulmonary bleed and had to be intubated. He was tried on three different vent machines after the max settings had been reached. His little body would not be able to recover. He made his entrance into heaven on November 19th 2015 at 3:30pm in my arms.

The grief is still fresh and the hardest thing I have ever been through. PE and HELLP stole my plans of a  happy pregnancy, a spontaneous experience of rushing to the hospital when my water broke, of a vaginal delivery with family in the waiting room, of holding him after delivery, and of bringing my first born home. I have found comfort in reading other's stories and knowing there is hope for future pregnancies.

But though this terrible journey, I know that
I WILL have another pregnancy.
I WILL be terrified through that entire pregnancy.
I WILL be aware of the symptoms sooner.
I WILL appreciate every second of my future children's lives.
I WILL trust in my God's plans.
I WILL always be the mother of an angel and
I WILL forever be changed by this experience.