Hidden Costs of Science

There is a push in the scientific community that data should be freely accessible and not hidden behind a paywall. I believe in this strongly. Many scientists I know got into the field because they feel a strong affinity for learning and being able to share what they've learned with everyone. As I'm juggling several things in life regarding science and lab work one thing has increasingly become quite apparent: There is an invisible cost bar to citizen science and citizen self study. As I'm trying to start my own lab (whooo, big post I've been avoiding making for reasons), dealing with current lab's recent audit (can't say much due to privacy and NDA), I've really been digging into the nitty gritty details of what it takes to run a certified, private laboratory. The initial costs that you expect (equipment, consumables, space) is understandable to some extent and can be mitigated by hunting for deals on used equipment and government auction sites of equipment they no longer need. But then there's the protocols that are industry standards and accepted as the way to have consistent results from lab to lab and person to person. In my current field there are two standards agencies that we pull methods from: ASTM and ISO. A single pdf copy of an ASTM method can be purchased for a little less than $50 USD. (So far that I've seen, there might be price variants that I haven't discovered). That copy is authorized for ONE user. To technically be in compliance with the copyright, my lab should be purchasing the rights for every person who uses the SOP. But instead we just copy off the one and pass it around. To acquire every single ASTM standard, for the current year, would be just over $10,000 USD for a digital copy, single user copyright. When it comes to an ISO standard they get trickier. We are currently working on an audit for an agency that requires us to follow ISO 12345* *not the actual # Several of the deficiencies cite laboratory failure to follow protocols, including details on holding time between sampling and testing, and quality control of an in house component made for the test. If you look up in ISO 12345 the details regarding what is required, the SOP just states to refer to ISO 12333 and ISO 1223. I went to an online store that sells access to these digital copies and added them to my cart to see what the total would be if I purchased all six (12345 + the 5 referenced) and the total came out to $943 USD. So now, as a citizen trying to start a lab, I need to add in a budget to purchase my SOP sources because they are not available in any reasonable manner. No wonder science, as a business, is out of reach for the average person, even one with a relevant degree. Not to mention the costs associated with achieving certification. Before you can even apply to have a lab certified with some agencies, you have to pay them for access to their audit standards to be prepared. Then you pay their employees to come to your lab for the audit. So if I want to achieve certification for my lab, I can't even tell if it's worth doing and preparing from the start without being out money. Because I can't take clients on until I can offer them the guarantee that the certification provides.

A day in pictures

Hazel wakes up before my alarm. She'll chatter a bit while I snooze, then its breakfast for her. I love these morning snuggles.

Happy baby while I take the morning constitutional.

Kaylee hasn't woken up yet, so time to go get her out of 'bed'.  

Then changing Hazel's diaper while Kaylee actually wakes up. 

Since her pajamas were wet from a minor diaper leak, it's new outfit time for Miss Hazel.

Kaylee hasn't really woken up.

Hazel gets playmat time while I finish getting ready. This includes figuring out what Kaylee will eat so she's not grumpy, getting Kaylee dressed, packing my lunch, packing Hazel's 'lunch' of breastmilk pumped from the day before, getting myself dressed and getting everyone out the door on time.

Contemplate picking today's outfit from the load of clean laundry waiting to be folded. Decide against it. Resolve to fold laundry after work.

Everyone is in the car!  I don't have a set start time on Fridays but I like to be out the door between 9 and 9:15.  The earlier I get to work, the earlier I can leave.

Space shirt! 

Hazel isn't asleep, she just doesn't like rain.

I top Hazel up and the kids are begging me to put her in the bouncer. Hazel is very popular. Everyone wants to play with her.

I decided to 'dress up' today.  An amber pendant necklace (with insects!) and some matching ish earrings. 

The drive takes about 50 minutes. Eric wants me to go to Costco on my way home to get cat food.

I'm at work! I drop my lunch bag in the freezer so it stays cold and head back.

Clock in!  I have to punch in a number, they do not have my fingerprint programmed in yet.

Immediate tasks: Plates that I innoculated yesterday are finally dry. They go in the bell jar with a candle to consume all the oxygen. The bell jar gets labled with the Lab ID and the date it gets taken out.

Then put into the incubator. All of those black plates? Those are all testing for Legionella. 

I can't get into the excel file where we log new samples yet (only one person can edit it at a time) so I decide to do some research on a funky bacteria I've seen every week on the floor sampling of the clean room. Turns out its Bacillus mycoides and it's a soil bacterium. This means a few things. 1. The current cleaning procedure is not sufficient 2. The current steps being taken to minimize contamination are not sufficient or not being followed. I bring this up to my lab manager and discuss it with the facility manager. I've seen this problem before. It was solved with SporGon and sterile mops. I feel awesome.

I also feel some letdown and check it out in the bathroom. Good thing I have spare breastpads because I forgot to put some in this morning and have suffered the consequences.

The lab log is finally usable so I log in the new samples and assign them IDs. Then I take two to work on. I will be in charge of following them through to completion and writing the report at the end. Here I've prepped for more Legionella analysis of water samples.

Then its lunch. As a part time employee I have 30 minutes of break. I spend 15 minutes eating and 15 minutes pumping. This company is good, they have a nice private space for me to do this that's not a bathroom. I browse reddit while I pump and try to think about Hazel cuddles for extra oxytocin boosts of milk.

Good boobs!  This goes into my freezer chilled lunch bag and I go back and finish the samples and get them set up. I was going to try and browse a lab supply company for some parts that we need but the network needed to be restarted so our computers had to be turned off. It was not back up by the time I left.

4 hours later... Time to go home.

And it's raining decently hard.

Greaaaat. I do stop at Costco and then head to pick up the girls. It only added about a half hour since I was only getting a few things. 

The video is loud, but I love her reaction when she recognizes me.

Then a short drive home and unloading the truck!

Hazel is pretty much ready for a nap and we snuggle a bit.

When I'm able to escape the tiny one, Kaylee gets some one on one and snacks. Eric comes home shortly after and gets glomped on by Kaylee.

Hazel wakes up and seems cold. I'm cold. So I bundle her up.

We demonstrate for Nana's facebook friends that the happy smiling baby isn't always happy and smiling. No babies were harmed in the taking of this picture. 

After I make myself dinner (Eric and I have decided that we're fending for ourselves) I take over Hazel duty. She's hungry so I get comfy on the couch.

Kaylee watches Episode VI 

Hazel takes another nap, much to my surprise. I am trapped.

I play some Clash of Clans. War is about to end so I need to get in my final attacks. Hazel wakes up and is still acting fussy and hungry so I get ready for bed and put her in more appropriate pajamas. Eric handles Kaylee. I'm pretty much in bed for the rest of the night and entertain myself with Hulu and Netflix. I'm watching early ANTM on Hulu and Criminal Minds on Netflix.

Once I'm able to escape I grab a snack and set up with the laptop to browse the internet and write this.  Hazel will likely fuss in an hour or so, I'll feed her then, try and move her to the crib and pass out myself.

Ta da. A day in the life.

Note: In the winter this day would include an evening barn visit to feed. There's no point to grain and I know they have plenty of fresh water, so horses were fairly hands off today.

Palytoxin

My article is online and published and a check is in the mail.

This is an AWESOME feeling. I can't wait for my next article assignment. I really enjoyed devoting time to this. It was a good exercise in time management since I needed to work on it when Hazel was sleeping and that time is limited in quantity.

Palytoxins

Science!!

A college acquaintance contacted me about doing some writing for his organization. I jumped at the chance and started working on my assignment today! It's a paid writing gig and I'm really enjoying being able to throw myself into some awesome science and learn about a new topic.

My research topic is all about palytoxins and their dangers in reefkeeping. The take home message that I'm seeing emphasized over and over again in my reading is that if you're handling live rock and coral, wear gloves, wear eye protection and probably a mask too. And keep pets out of the area. This stuff is nasty and it will not discriminate in cells that it targets.

It feels really good to be delving back into research and science. And given Hazel's current nap schedule, I actually have time to get this done and work from home. It's an all around good feeling for me right now.

In other news, I finally got the vet out to see the animals. I need to acquire some dewormer for both of them and Gwyn needs to lose weight... oops.

I do my best research and learning by summarizing what I read and handwriting notes. This later helps me organize what I want to write. I'm also making a digital copy in case a 4 year old occurs.

It can be hard to do research with a 4 year old on your back

During the vet visit. Gwyn and Saffron were well behaved, Hazel fell asleep, and Kaylee was the whiniest whiner.

We've been going for evening walks. This was last night. An impromptu math lesson.

I love these girls.

At the track for our evening walk. Yes she is wearing snow boots...

I can see the big kid in her face in this picture. I love it.

30 weeks down! 8-12 weeks to go!

Blah blah this is all tentative, but it serves to illustrate the things that are going to be important for me to have done or not done.

I've been slowly coming to terms with being required to have a hospital birth (versus the home birth that got waylaid by my blood clots) and it's been stressful trying to plan for every possible scenario that could result from being in a hospital setting.

So I'm writing this keeping in mind that these would be ideal, but I understand that they're not necessarily all going to be possible, especially since I need to have my high risk doctors on the same page and I don't know what things they're going to require or be okay with easing me on. I've also got back up plans! And sources, because despite everything I'm still expecting to meet resistance and it's been nice to not see that so much.

ALL SCENARIOS

• Please DO administer Vitamin K shot
• Please DO NOT administer Erythromycin antibiotic to eyes
• Delay cord clamping until cord pulses down
• http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004074.pub3/epdf
• Please DO NOT bathe infant
• No formula
• Immediate skin to skin

IDEAL

• No AROM!!!!!   (artificial rupture of membrane)
• Limit cervical checks
• No pitocin, let us try natural methods first (nipple stimulation)
• Intermittent monitoring please unless medically indicated (please explain why)
• Do not offer pain medication, I prefer to move or use water for comfort (walking, squats, shower, tub, birthing ball) 
• I do not want to be on my back to push and would prefer squatting or hands and knees
•  (http://www.ncbi.nlm.nih.gov/pubmed/22592681)
• A heplock is fine, but I will self hydrate with water
• Food if desired 
• (https://www.asahq.org/about-asa/newsroom/news-releases/2015/10/eating-a-light-meal-during-labor)
• NO EPISIOTOMY
• Do not bathe infant, give her to me in all her goopy glory

INDUCTION

• If contractions are consistent, do not increase pitocin (please explain why if you need to increase dosage)
• Do not offer pain relief, I will request if I need it
• NO AROM
• Limit cervical checks
• Please give me time to consider each new step that might need to be taken
• NO EPISIOTOMY

CESAREAN SECTION

• Disclaimer: I understand this may not be possible in the event of emergency on mine or my infant's part, I would appreciate anything that can be done in such a instance
• http://www.doulamysoul.com/#!The-Organic-Cesarean-A-protocol-for-a-gentler-surgical-birth/c1c55/5696f6b80cf2e94e3fb671e4
• Please take a vaginal swab for use in skin to skin to mimic vaginal birth bacterial seeding for gut flora
• http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3110651/
• http://www.ncbi.nlm.nih.gov/pubmed/16189184
• http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1896187/
• http://www.nature.com/nm/journal/vaop/ncurrent/full/nm.4039.html
• http://www.kplu.org/post/researchers-test-microbe-wipe-promote-babies-health-after-c-sections
• Lowered drape please, I REALLY want to watch
• Please describe what you are doing! If I can't see I'd like to hear!
• Please perform heart/lung checks during skin to skin if possible
• Immediate skin to skin, preferably with Mom, if not, with Dad. 

Information Accessibility

The seriousness of my health issues aside, I'm really loving how a lot of the health care systems are now using an online chart system to track patient care and as a patient, I have access to it. I feel empowered, reading my own test results. I loved looking back and reading the notes my midwife took throughout my labor with Kaylee and similarly, I like having the details, the down and dirty data. I think it's the scientist in me. I can accurately educate myself to a level of detail that a doctor might not delve into (even though I desire it, it's honestly my biggest gripe with standard medicine. This is why I loved my midwife in Washington, he would send me research articles and really get into the nitty gritty once he found out I had a science background. It made me feel like a valued and contributing member of my own healthcare, rather than a marginalized idiot)

Henry Ford Health Systems uses MyChart, which seems to be standard. I think I have a crazy number of accounts with them now from all of the different hospital systems I've been seen by (from back in Washington especially).  MyChart is why I chose to go to urgent care further from home when I had the cramp and it's why, when given the choice of ER, I chose to drive 40 minutes away. I had not heard good things about nearer hospitals and since my prenatal care was within Henry Ford, I found it prudent to have my whole health care team reading from the same page.

I checked  MyChart tonight and saw the results from Vascular Imaging (right above my negative Gonorrhea test, thankyouverymuch). My clot was found in the right peroneal vein, it was called a total occluding acute thrombosis. Very shallow google research informs me that this is a common spot to get a clot. Obesity and pregnancy are my only two risk factors. I'm around the same weight as my previous pregnancy (only 10 lb heavier, really) and didn't have an issue then. But I am thankful things were caught in time.

Interestingly, given my symptoms, I had low probability of my symptoms being a DVT (deep vein thrombosis). My only symptom was pain. I had no swelling or edema, recent long distance travel or immobility. Go figure. This low probability was why they chose to do the D-Dimer test first, rather than jump immediately to ultrasound.  (I found a professional grade Merck manual on the subject, it's been fascinating to read!)

Over the past week I had been breaking down over random things. But reading this very clinical report on what I've been diagnosed with and what the prognosis and expected risks and probabilities are, it's actually quite reassuring. Eric and I both agreed we wish we had this last week. It would have eased our minds significantly.

Now I can't wait for the results of my CT scan to be posted to my account so I can get more specifics on my PEs (pulmonary embolisms)

That damn cramp....

I mentioned, in the same paragraph no less, that I'd been having a cramp in my leg combined with out of breathness.

Well. It wasn't a muscle cramp, tear or strain, like I thought.

Eric finally had enough and made me go to urgent care on Sunday. I drove myself in, arriving an hour after they opened (11am) to find I was the only one there. Sweet! I got seen immediately and related my symptoms. The doctor on call asked about shortness of breath and I did say I'd been having trouble walking up stairs. I think her face paled and she told me that I was going to the ER for suspected blood clot. She asked which one I preferred. We're in this healthcare desert so I could travel to several, all about 25 miles away. I chose to stay with Henry Ford.

The clinic called ahead and gave me paperwork to expedite my ER admission. I drove myself and called Eric and my Mom to give them a heads up. I walked into the ER and again, was seen right away. Sunday morning was slow, apparently, or I was near top of the triage priority. I got brought back and the nurse practictioner explained what the plan was going to be.

The first thing was they were going to do the D-Dimer test with my blood. It's the least invasive test for blood clots(and probably cheapest) but you can test false positive if you're pregnant. If I was negative, that was awesome.

I was positive.

Next I was sent up for an ultrasound of my legs. They were looking for a blood clot, or deep vein thrombosis.

The tech found a blood clot. When I was wheeled back down to my space in triage, the nurse practitioner kind of laughed, and said, "You're staying with us tonight."  In other words, they were admitting me.

Blood clots are serious business. Pregnant women are at a higher risk for blood clots due to excess clotting factor in their blood. Several doctors (both General and OB) explained that there was a risk that the clot broke off and moved to my lungs (where it could cause a pulmonary embolism if untreated) but the treatment was the same. The ER was declining to perform a CT scan because they were just going to treat me anyway if a clot was found in my leg. If one hadn't been found in my leg, I was going to CT next.

I was given a shot of blood thinner and sent up to my room. My phone was getting low in battery so I called Eric and he arranged for his sister to bring me a charger and a book to read. He was busy keeping Kaylee occupied and we both thought that a hospital visit at night would make bedtime a gnarly mess.

I settled into my room and enjoyed a brief visit from family. Then I settled in for the evening. My only hospital experience previous was when I was helping my friend Cheryl with her labor. You get checked very regularly by nurses when in labor at the hospital and I guess that's labor specific because I was not checked or bothered regularly and was basically left to my own devices with instructions that they didn't want me wandering the halls since I was on blood thinners.

It did not take long for me to go stir crazy.  Thankfully the hospital had free wi-fi. I called Eric after Kaylee was asleep and we chatted. Then I was in for a restless night. I slept for 3.5 hours before tylenol wore off and my leg pain was back. I was debating calling the nurse when an alarm started going off in the hospital. I figured she had to be awake anyway, so I called and asked for more tylenol. Apparently there was a fire drill. At 3:30 am. By 4:30a the tylenol was working its magic so I  started trying to get back to sleep. At 5:30 a resident came in to talk to me.  I was ready to kill her. I rolled over but at 6 a patient transporter came to get me. I was heading down for an echocardiogram to make sure my heart looked good.

I zoned out for part of the  morning and people were in and out. The big thing was the doctors changed their minds. They still wanted me to have a CT scan to check for clots in my lungs, even though the treatment wouldn't change.

I went for my CT scan around 1pm. It didn't take long and the contrast dye made me feel like I was peeing my pants for a brief moment and then I had a moment where it felt like I was struggling to breathe but it passed.

My midwife came by to talk to me and that felt really nice that she took time in her day to do that. She splits her time between being at this hospital (why I chose it, so all my care was under the same account) and being at a location closer to me. I really like her and I'm hoping I can still be somewhat under her care for this pregnancy.

I called the home birth midwife and canceled my appointment for today (tuesday). I've effectively risked out of home birth, which REALLY sucks but there's nothing I can do about it.

The obgyn came back with my CT results. I had multiple clots in both of my lungs. It was likely the source of my out of breathness. After she left I had a minor breakdown and just cried. Thinking about how close I came to potentially dying  is nervewracking. My midwife came back to talk about that too, gently and jokingly scolding me for going all out with the risk factor, hah. She also got me in for an appointment with the Maternal Fetal Medicine specialists. All of my appointments now are going to be at the hospital. No choice in the matter, but I may be able to alternate and keep seeing my midwife.

It's weird. The pregnancy is high risk, but me laboring is not, because I'll be pulled off of the blood thinners for that. I just don't know if the OBs are going to be super controlling about timing or if they'll let me go into spontaneous labor (my desire). I absolutely cannot be on blood thinners if I need a C-section, but the plan is that I stay on my current medicine until 35 weeks, then switch to heparin, which can be easily and quickly reversed when the time comes for labor.

Eric came down to the hospital and brought Kaylee. It was so nice to have them with me and Kaylee definitely missed me. She was very cuddly but also fascinated by my IV and the bits of blood that had leaked a little. You could see the little gears turning when the internal medicine doctor came in to talk to me and listened to my lungs with his stethoscope. She plays with her play stethoscope at home and does similar things.

All of the doctors were basically agreeing that I was clear to be discharged at that point. But we also had to talk to the patient advocate at the hospital about my medicine cost. Even though Eric has a great job, and an arguably good insurance policy, my medicine will cost us $3000 for this first month's supply and $2000 for next month (when we meet our deductible) and after that will just be a copay. Until January, when it starts all over again. Of course, some of this might change as we pay for the hospital stay.  The hospital pharmacy only had 10 doses on hand. For me, that's 5 days worth. It was $895.

If I was on medicaid, it would be free.  Thanks insurance companies, screwing over the middle class. Never have I wished more for single payer insurance. We can pay it. We're not going to be broke because of it. But it certainly affects how we had budgeted. I can't imagine how I would be able to get my medicine if Eric made a little bit less.

After getting a flu shot, I was officially discharged at 6 pm. I am forbidden from risky activities where I could fall and experience an internal bleed.

So no more riding for this pregnancy. I am going to go crazy. I did decide that I'm going to ground drive Gwyn, and maybe get her working on the farm and doing the arena dragging and pasture dragging. That would be something we could do together. I have also offered her for lease, so she continues to be ridden, per the suggestion of Jim, my old dressage trainer.

I don't think Eric has fully process this. We were going to have a heart to heart after Kaylee went to bed last night, but I laid down and just passed out, I was so tired. He doesn't have anyone to talk to about this stuff except me, so when something happens to me, he's stuck. I have my online group of moms and this place to get my verbal vomit down and deal with shit. He doesn't have that outlet.

All in all, it was a crazy Sunday/Monday. I'm home and that feels so good. My health issues were found before something more serious than a leg cramp cropped up, and I'm keeping myself healthy for Babydos.

The kid, a new house, and making babies

I've only been temping lately and I wanted to get back into more tracking so I ordered more LH test strips as well as a nifty new toy that can also be useful!

LH test strips, I hope I don't need all 50 of them...

Apparently, you can also check your saliva to see if it crystallizes. The crystallization changes when you ovulate and that can be detected by drying saliva on a microscope slide and examining it. So I got a pocket microscope.  It's small enough to fit in my purse!! And way cooler than the "marketed for fertility looks like a lipstick case" pockets scopes. That would stick out in my purse.

Glass slides.

Bright LED for examination

Test of saliva. You can see some crystallization but during ovulation/fertile zone there should be tons of 'ferning'. I'll hopefully nab a picture when I see it in the next few days!

In other news, I am the owner of this AMAZING front yard! Horses not included, but that's okay! I have my own ;) 

And Kaylee is already in love with this awesomeness in the backyard.

She practiced climbing a rope ladder at the park.

It was a gorgeous day on Lake St. Clair

So she went swimming in her undies. Lack of swim suit bedamned!