Oof, OOP

I'm the numbers person in our household. I have a rather spectacular spreadsheet were I track our monthly expenses, account balances, loan balances, and so forth. I can tell you what our budget was, what percentage of our income we spent on taxes, on living expenses, and on savings. In other words, I'm the colossal nerd in the house. (How colossal, you ask? The last two years running, I've created a Year-End Financial Review powerpoint deck to review with DH. I thought this was a fantastically swell idea, until I saw the feedback a fellow over at Bogleheads got about doing this same thing with his spouse. Let's just say the feedback wasn't positive!).

Having just wrapped up the last of the 2017 spending, I took a look at the medical category for 2016 and 2017. Counting from Jan 18, 2016 to now, the total cost of getting pregnant and then getting un-pregnant was been $25,196.66. That does not include my insurance premiums, hundreds of dollars in supplements, or the approximately, 2,000 home pregnancy tests I've bought. During that time period, it's our second greatest expense, only falling behind our mortgage. 

I know I am actually really lucky. That total covers 3 OI/TI cycles, 9 surgeries, nearly 6 weeks in-patient, and two deliveries. It could be so much higher, if we'd needed more cycles or if we need to move to IVF. It's tough, though, when I see that total and think about what it "bought" us. It bought us an hour with the most precious little girl you can imagine. It bought the chance to give our twins life. It bought five glorious weeks of feeling Quinn move inside me. It bought more tears and heartbreak than I can quantify (and as a nerd who likes spreadsheets, I'm usually really damn good at quantifying things). It's bought me near constant physically pain and months missed from work. It bought amazing, touching connections with friends and family members who have reached out. To echo what appears to be a recurrent theme: it bought us hope and the loss of hope.

I'm working on my 2018 budget now. Planning for 3 OI/TI cycles, and hitting my OOP max for medical care. I honestly can't tell if that's me being optimistic or pessimistic. I can tell you that I stand behind my response when a friend asked me "What will happen if you don't have kids from those cycles?" Answer: "I'll have more money for other things in 2019."

Anxiety in the TWW

I don't understand why, but my anxiety level is always greatest two days before I'm going to take a pregnancy test*. Cognitively, I've tried everything I can think of to reduce that anxiety:

• Remind myself that nothing at all will change the outcome of that test, not even obsessively googling 'early pregnancy symptoms,' 'wondfo 11 dpo bfp,' 'thin lining success stories', etc.
• Remind myself that I am ready to cycle again. I have a fridge full of paid-for drugs that I'd like to not waste. That means either outcome will be ok!
• Remind myself that I fully expect a BFN, and given my lining, even a BFP is likely to be a chemical. 
• Remind myself that testing at 11 dpo is really early so I shouldn't expect anything.
• Remind myself that a BFN will mean I can stop this endometrin for a few days, which would be nice. 
• Remind myself that it will be ok, no matter what. 
• Distract myself with other things. . . .ok well maybe the googling isn't such a good distraction! :)

None of that works. And now, with so many cycles behind me, I'm really getting curious as to why it's a two days pre-test issue. . . why not the day before? Why not three days before? What odd emotional/chemical reaction is going on in my brain two days prior to testing? 

I wonder if some of this is because I'm having symptoms. It's 99.9% likely that those symptoms are the result of the estrace, the endometrin, and the cold I got, but they're a perfect match to my last two pregnancies. Maybe I'd be more calm if there was no hint of a possible positive? Or maybe it's because my last two cycles should never have resulted in BFPs, but they did, so I have wholly unrealistic expectations?

Tomorrow is 11. I am more calm today than yesterday. We'll see what happens tomorrow.

*Disclaimer: although my RE says to test 14 days post-trigger, my last two cycles I tested the trigger out, and it was gone by 10 days post trigger/ 8-9 dpo. After that, I saw legit BFPs by 11 dpo, so I start testing at 11 dpo. What can I say, patience is NOT my strong suit!

Random Observations from the TWW

Mostly I’m thinking of this as the TWW until my next cycle starts, and I’m praying I don’t wind up with another chemical because of my lining. Today I finally have some breathing room: We returned the last of our guests to the airport this morning, so I finally have time to be back on a computer without someone looking over my shoulder, wondering if there are plans for dinner, asking for something, etc. It was lovely seeing everyone, but it’s lovely having our house back to ourselves, too! Obsevations from the last few weeks:

• I’m now on Endometrin, 3 times a day, and Estrace twice a day. I think Endometrin must be the Alka-seltzer of the progesterone world. Crinone isn’t externally messy, but leaves a mess behind inside. Prometrium is a gloopy mess, especially with the Estrace. Endometrin, though, I swear I get bubbles out of my vagina for hours after using one. Also, the first time I stand up in the morning, I get an actual flood of endometrin and estrace. As someone whose periods have never been heavy enough to need “overnight” protection, I finally have a perosnal appreciation for why you’d need a bigger night-time pad than what you use during the day!
• Despite the fact that we agreed to a ‘no gifts’ policy years ago, MIL brought a cold and gave it to me. Fun. 
• If you’ve ever wondered if a Nissan Leaf (electric vehicle) can do an 18 mile round trip with the heat running in -5F temps when the gauge says “29 miles remaining,” let me assure you, it can’t. If you’ve ever wondered how far our house is from the airport? 18 miles, round trip. I know DH likes the car and I’m happy for him, but I’m really starting to hate it. Its range is too short for me to use for my commute without recharging at work. DH works from home. Why do we have a car that the person who commutes can’t commute in? 
• Two years ago, DH bought a remote control helicopter to play with while family visited. It broke, and two years later, it is STILL on the floor under the console table. Last year DH’s brother brought a robot to play with, and forgot it here. Rather than mailing it back, DH left it on top of our console table all year. This year, DH bought a massive 3d printer from China. It, the packaging, the table with the computer, and so forth are taking up about half of our living room. I have initiated negotiations for the peaceful withdrawal of the printer from the family room, as its continued presence there for more than a month or two will NOT end well. For it or for DH!

Wishing everyone happy holidays!

Nope

The answer to the question could my lining improve? Nope.

At monitoring appointment #4, follicles were at 24 and 18.5, lining was 5 and cystic. They told me to trigger as we weren't getting any change from more stims/estrogen.

Basically, I just spent about $4k to accomplish the same thing I could have accomplished with a natural cycle: lining that's just thick enough to cause a chemical pregnancy.

I'm sad, although not so much about this cycle as about the fact that maybe my lining can't recover. Maybe I've been through all this horror and heartbreak for nothing. I knew that was the risk if I did the TAC surgery, but I didn't know how bad the complications from that would be. I'm stubborn enough, I probably would have done it anyway, but still. . . 

Not a great place to be going into the holidays. Off to get my mom from the airport . . . mother in law, brother in law and mother in law's fiance all arrive in the next few days. There will be holiday cheer. Or something.

Oh, and crowning glory? Earlier this week I got my first "just relax and it'll happen!" From my mom. Actually she said maybe my stress was inhibiting my lining. I know it comes from a place of love, but e-gads! I believe strongly in the mind-body connection, but my stress level isn't going to fix this any more than my mom would have recovered from her breast cancer or Grave's Disease by relaxing.

Monitoring #3

Monitoring, again. Follicles look great. E2's going up, P4's stable, LH is good. Lining? Down to 5 with only patches of triple stripe pattern. Since my LH is stable, they're having me up my vaginal estrace to 3 a day, do another Menopur, another 225 of FSH, and return tomorrow. I'm super glad the follicles look good and have responded, but I'm worried about the implications of my lining. Asherman's strikes again. 


Day 4
             2016         |   Feb 2017  |     Dec 2017
R:        11, 9, 8.5   |     6.5          |     12, 10.5
L:        12.5, 8, 8   |     9.8          |     5, 3.5
E2:      803            |       ?           |     188
P4:      2.68           |       ?           |      < 0.5
LH:     8.25           |       ?            |     3.38
Lining:  6.9 triple | 5.9 triple   |     4 uniform
FSH    600             |   600           |    900
Menopur   0        |       0            |     4 vials    

Day 7
             2016                |   Feb 2017  |     Dec 2017
R:        19, 13.6, 7        |     9.5            |     20, 17.5
L:        16.5, 15, 10, 8  |     14.5         |     6, 8
E2:      1294                  |       432        |     718
P4:      1.66                   |       <.05       |      .07
LH:     1.03                    |       1.15       |     2.84
Lining:  6.9 triple        | 7.0 triple    |     6 homogenous
FSH    1050                 |   1275           |    1575
Menopur   0              |       0               |     7 vials


Day 8/9
             2016               |   Feb 2017  |     Dec 2017
R:        22,18,7,4        |     11            |      20.5, 18
L:        18,16,10,8      |     16.5         |     7.5
E2:      1690                |     1027        |     1087
P4:      2.59                 |      0.12        |     .18
LH:     0.76                  |      1.15       |     3.18
Lining:  6.9 triple      | 6.0 triple    |     5.0 partly triple
FSH    1200                |   1875          |    2025

Menopur   0              |       0            |     9 vials
Trigger       Yes!          |   Not yet    |     Not yet

Monitoring #2

Yesterday was my second monitoring appointment. To cut to the chase, I had follicles that were ready, but my lining wasn't. So, we keep on chugging and I start to worry about how big a follicle can get before it's "over cooked." I go back tomorrow morning, and assume I'll trigger if my lining has made it. Just for grins, I've included my cycle data below, along with my historical day 8/9 stats.


Day 4
             2016         |   Feb 2017  |     Dec 2017
R:        11, 9, 8.5   |     6.5          |     12, 10.5
L:        12.5, 8, 8   |     9.8          |     5, 3.5
E2:      803            |       ?           |     188
P4:      2.68           |       ?           |      < 0.5
LH:     8.25           |       ?            |     3.38
Lining:  6.9 triple | 5.9 triple   |     4 uniform
FSH    600             |   600           |    900
Menopur   0        |       0            |     4 vials    

Day 7
             2016                |   Feb 2017  |     Dec 2017
R:        19, 13.6, 7        |     9.5            |     20, 17.5
L:        16.5, 15, 10, 8  |     14.5         |     6, 8
E2:      1294                  |       432        |     718
P4:      1.66                   |       <.05       |      .07
LH:     1.03                    |       1.15       |     2.84
Lining:  6.9 triple        | 7.0 triple    |     6 homogenous
FSH    1050                 |   1275           |    1575
Menopur   0              |       0               |     7 vials


Day 8/9
             2016               |   Feb 2017  |     Dec 2017
R:        22,18,7,4        |     11            |     
L:        18,16,10,8      |     16.5         |     
E2:      1690                |     1027        |     
P4:      2.59                 |      0.12        |     
LH:     0.76                  |      1.15       |     
Lining:  6.9 triple      | 6.0 triple    |     
FSH    1200                |   1875          |    

Menopur   0              |       0            |     
Trigger       Yes!          |   Not yet    |

Monitoring #1

Yesterday was my first monitoring appointment. It's sadly clear that the response I had during my first cycle during 2016 was the anomaly. I have hope, in that this cycle is somewhat better than the last one. That said, I'm on much higher doses of meds. Despite that, my lining isn't doing much compared to past cycles and my E2 is staying low, even with more follicles. As always, that's worrisome.

After 4 nights of 75IU of Menopur in the morning, 225 iU of Follistim in the evening, and 2 mg of Estrace twice a day, I have two follicles in the running.

For comparison sake, here are my numbers from all my cycles. The 2016 and Feb 2017 cycles were after 4 nights of 150 iU of Follistim.

             2016         |   Feb 2017  |     Dec 2017
R:        11, 9, 8.5   |     6.5          |     12, 10.5
L:        12.5, 8, 8   |     9.8          |     5, 3.5
E2:      803            |       ?           |     188
P4:      2.68           |       ?           |      < 0.5
LH:     8.25           |       ?           |     3.38
Lining:  6.9 triple | 5.9 triple    |     4 uniform

I go back on Saturday morning to see how things are going. The nurse asked if we're doing TI or IUI, so I asked her to confirm if Dr. B thinks IUI is necessary post-TAC. It shouldn't be, but it won't hurt to ask.

Also, the person at CVS Specialty who decided to provide push-fit syringes deserves a smack upside the head. Maybe it's just me, but getting the q-cap for the Menopur transferred from the liquid to the powder without spilling everywhere is a pain. Same goes double for getting the protective cap off the needle when the needle won't stay on the syringe. I haven't stabbed myself or spilled my meds yet, but I'm sure it's coming.

Making Things Harder, 1 Fax at a Time!

Remember how I changed my flights so I would be back in MN in time for baseline ultrasound assuming I had a 9 day luteal phase?

Well, that didn't work.

AF showed up at 8 DPO. A day too early for my new flights. So I scrambled and with thanks to a great nurse, was able to get monitoring done in SoCal on Friday. Of course, for some reason the faxed order never reached the SoCal clinic, so I arrived for my appointment, then had to scramble to get my RE's office on the phone to re-fax the order.

Next problem: my meds were in a fridge back in Minnesota. I would need to use them Saturday and Sunday, but wouldn't be in Minnesota until Monday. I tried to get next-day delivery from an online pharmacy on Friday, but the faxed prescription never reached the pharmacy. Anyone see a trend here? Thanks to the time difference and an early day, my RE's office closed before I could ask them to try again. Thus, I spent Saturday driving two hours to Encino with copies of my prescriptions, just so I could pick up two days' worth of meds.

Important reminder to myself: Always, always have them fax the prescriptions to you. That way if the pharmacy doesn't get them, you have control and can re-send.

Anyhow, the final chapter to this particular mess goes like this: on Saturday, when the nurse called to confirm I was ok to start meds, I asked when my first monitoring appointment should be. She said Monday, which seemed early, so I asked. She confirmed Monday, and got me scheduled. We got home around 12:30 am today. I just wanted to sleep, but I set my alarm, got myself dressed and was ready to head out the door when my phone rang. It was another nurse at the clinic who had seen my name on the schedule and was calling to reschedule me because it's too bloody early for a first scan. GAH!

I go back on Wednesday. Until then Estrace twice a day, 1 vial of Menopur in the morning, and 225iu of Follistim at night.

Shameful Confession

It's time to make a shameful confession. I eat pretty healthy. I make most of my food myself. I avoid most refined sugars/flours/etc. But, <deep breath>, I hate sweet potatoes.

"What?" you say, "But they're good for you!" "They taste great!" "Everyone loves sweet potatoes!"

I told you this was going to be a shameful confession! Can't stand sweet potatoes. Until now. I finally found a recipe that's anti-inflammatory, healthy, and tastes amazing. And. . .it uses sweet potatoes!

I know this isn't a cooking blog, but what the heck, I'm sharing anyhow. This is based off of Laura Lea's Sweet Potato and Kale Eggy Muffin cups. I highly recommend her site for more ideas. I have her cookbook and love it.

Sweet Potato, Kale and Mushroom Frittata

1 sweet potato, peeled and cut into 1" slices
2 cups mushrooms
2 Tbs coconut oil
1 shallot, minced
2 cloves garlic, minced
2 cups kale, de-stemmed and chopped into 1" pieces
3/4 tsp sweet, smoked paprika
1 1/2 tsp salt
1 tsp rosemary
1 tsp thyme
10 eggs/egg equivalent
1/3 cup grated cheese (manchego and guyere both work well)

1. Set oven broiler to 'high' and place rack in middle of oven
2. In food processor, place sweet potato and mushrooms and process until pieces are roughly the size of grains of rice.
3. In large bowl, whisk the eggs, salt, paprika, rosemary, and thyme. Once eggs are completely beaten, stir in cheese
4. Add coconut oil to 12" cast iron skillet and allow to melt. Add the shallot and garlic and sautee until translucent. Add in the sweet potato and mushroom mix, and cook stirring occasionally, until softened and starting to brown. When the mixture starts sticking to the pan, you'll know it's staring to brown! Add the kale, and stir into mixture. Continue to sautee for another 1-2 minutes, until kale is beginning to wilt. 
5. Pour egg mixture into skillet. Stir to ensure egg reaches the bottom of the pan. Allow to cook until bottom of mixture is fully set.
6. Transfer skillet to oven and broil ~4 minutes, until golden brown, puffed, and fully set. Remove from oven and let cool. 

Microblog Mondays: Balance

Welcome to Microblog Mondays! Want to learn more and read more? Head over to Stirrup Queens for the details!

With the possibility of a new cycle coming up in a week or so, I'm left with the age-old question IF'ers face: How to balance optimism with pain avoidance?

Optimism: I believe it's important to stay optimistic and have faith that this cycle can work. Do I think you can't get pregnant without optimism? Heck no! But I do know that the mind and the body are linked, so I figure it can't hurt if my mind thinks that my body will get pregnant!

Pain avoidance: The chances of this cycle working are incredibly small. The chances of cancellation are much higher. If I never get my hopes up that it might work, then I'll never have to experience the pain of having those hopes dashed if it doesn't.

Oh wise internet, how do you balance these?

Corners and Choices

I think that yesterday was the day I finally started to turn the corner. I still have pain in assorted places, but it’s not so bad that I can’t function through it. I’m still three-months-pregnant-with-twins swollen, but that’s actually a decrease from a few days ago, and best of all, it doesn’t hurt to touch my belly in most places!

So, I think the corner is being turned, slowly. Or, as I told someone, I think I see the light at the end of the tunnel, and I’m no longer hoping it’s a train.

In other news, it appears that I’m 1 DPO today. If CD1 comes on 11 DPO, then it will be 12/10. I am supposed to be on a trip back to SoCal to visit friends on 12/10. I fly back home 12/11. This means that if my period waits until 12/10, I will have to do a CD3 baseline on 12/12 or miss this cycle. If my period doesn’t wait, (I’ve had a lot of 9 day luteal phases) I’ll either have to fly back early and miss seeing one of my closest girlfriends, or skip another cycle. Choices to be made.

There’s another layer of choices, too, though. My boss called me last night to tell me about changes at my office. When I return, we’ll be announcing that she’s moving to a new job (awesome promotion for her) and I’m taking her role (awesome promotion for me). This means that taking off the morning of my first day back is not the best choice. But it’s necessary for baseline. Choices to be made.

If I put my career and cycling first, the simple answer is to cancel the trip. Then I’ll be here for baseline whenever CD1 comes, and I’ll be in the office when needed. I’ve put my career first for about 10 years, which is partly why I’m fortunate enough to have a great job and this promotion opportunity. These last two years, missing work for months due to health issues and not being fully “present” due to morning sickness, grief, and pain, have really done a number of my sense of career-related self-worth. That said, the last two years, meeting and saying goodbye to our daughters, have also done a number on my priorities.

I miss my girlfriends from Ca. I’d like to see them. When I was at my lowest back in January, I'd have given anything for the ability to get together with my two best girlfriends and just hang out. I wasn't well enough to do so back then. 

Choices. Not easy ones, but choices. I feel so grateful to have these choices. To feel well enough to be able to consider the trip – up until yesterday I was figuring I’d have to cancel. To feel well enough to cycle again – that wasn’t a given, either. To work for an organization that, despite me missing an entire quarter of this year, and two months of last year, is still promoting me. I can assure you, my last company wouldn’t have done that.

I’m grateful for the choices, but it doesn’t mean that making them is any easier! Magic 8 ball time?

Micro-blog Monday: A Micro Period

Here's attempt #2 at Micro. Want more Microblog Mondays?  Head over to Stirrup Queens to read more!

As an Asherman's patient dealing with IF, you know the one thing that's worse than having your period go missing?

Realizing that the light spotting you had the morning of 11 DPO, your usual period day, WAS your period. Apparently my lining is so jacked up, that with a 24 day cycle, ovulation on day 14, and prometrium from 16 to 24, I only got enough lining to spot.

I am wishing, hoping, praying, etc. that with Estrace and stims to increase my endogenous estrogen, I'll be able to build a lining. But I've never had this little before, so I guess we'll see.

Thanksgoodness!

It may be Thanksgiving, but as a gluten-intolerant pescatarian, I've never been much for celebrating. Instead, I'm going to celebrate Thanksgoodness!

Why, you ask?

Billed to insurance for my TAC surgery:
$4,000 for Dr. $47,664.33 for University of Chicago med center and all associated care.

Paid by my insurance for TAC surgery:
$2,600 for Dr. $26,310.72 for University of Chicago med center and all associated care.

Paid by me:
$0 - In-network Out of Pocket Max reached.

To be fair, I've spent well into the five figures this year due to having no fertility coverage and hitting my out of pocket max, but it is such a relief that this surgery isn't going to cost any more. I know a lot of insurers refuse to pay for it, so I'm super, super grateful for mine. The fact that I have STD coverage so I can afford to be out and recover is even more amazing. I am so grateful, I just have to say Thanksgoodness for my insurance!

Small Wins

Slowly I am gaining some small wins.

As of last night, I can sleep on my left side again! I still can't sleep on my right side, but I'm hopeful that will come.

I am able to sit up without pain for at least a few minutes at a time, so long as I lay back down once the pain starts up again.

DH got his STD screening done! He described it as "the worst possible way to lose weight." Fortunately I'm not very mobile and he's very cute, because saying that to the woman who has had her insides surgically carved out, repeatedly, was probably unwise.

Still no period. I am beyond perplexed. My temp is slightly high for follicular phase, so I'm not to the point of panic yet, but I wonder if swelling plus my tilted uterus could be preventing things from escaping? I still am scared that the Asherman's has won. Let's not think about that just yet - today is a day for small wins of mine, NOT big wins for Asherman's!

Missing a Few Things

Things that are missing:

1. My period. Can I tell you how worried I am? I've NEVER had a 14 day luteal phase, even with progesterone. There is no chance I'm pregnant. My temp has dropped. There is no bleeding. Does this mean my lining is gone? My uterus is fused shut? This surgery, all this pain, was in vain? I am not in a good place.

2. My ability to know when I have to pee. I guess the swelling is still bad enough that I can't tell if/when I have to pee. This is not good.

3. DH's STD screen. To be fair, this isn't missing, he just hasn't gone to get the blood draw. I guess this doesn't matter - no period means no RE, no RE means he'll never need his STD results. That said, I'm really frustrated, because I've just been fucking cut open and he can't find the 2 hours it will take to get a blood draw. I know he's super stressed and I know he hates needles, but that, combined with the fact that he left me mid-recovery to go to CA for a business trip does not leave me feeling supported. And that's partly not fair, because he took amazing care of me in Chicago and on the first day home, and no one's taking care of him, but it's still how I feel.

4. Seven pounds. I am officially back at middle school weight. Not being able to eat for more than a week is suboptimal. It's not what I want going into trying to get pregnant again, and it's really depressing, because I spent the last few months trying to get back in shape and now I've probably lost what little muscle I gained. Did I mention that I'm not in a good place?

5. My willingness to touch myself between my belly button and my knees! Seriously, between the incision, the abdominal pain, and the digestive pain, plus the history of uterine infection, I get scared each time I have to do things like use the bathroom and take a shower. I don't want to touch myself. It hurts, I'm worried I'll "break" something, and it's so depressing to see my body so trashed for no obvious benefit (see #1). And since we're on the TMI train, I'm sure not ready yet, but I am so scared about having sex again. I know the TAC will have no impact, but I've got this irrational fear of pain or problems during sex. This sucks.

Not-so Micro Blog Monday

Note: I am trying to participate in Microblog Mondays. On reflection, I don't do great with the Micro part. Does it count if this is shorter than my last few posts?

Today was my original return to work day. Hah! I guess I still have some optimism in me.

As for the rest of me - there are some "Yays!" and some "Boos!".

Yays: The incision is starting to tug/pull more, which I suspect is healing. I can roll my hips over in bed using my ab muscles. Swelling is down on the right side of my abdomen and I can even take a full breath or yawn! I am off all medications.

Boos: I have one section of colon that’s still stabby. I can breathe when on my back or on my left side, but the pain gets so severe when I'm on my right side I can’t breathe at all. The hemorrhoids are resolving but the skin around my bum is in horrible shape. Sitting, standing, moving - I am constantly aware of the pain!

Please tell me this will all be worth it some day?

Want more Microblog Mondays?  Head over to Stirrup Queens to read more!

TAC - Part II

Saturday
Somewhere in the early hours of the morning, after the reglan kicked in, the pain got so bad I gave up and used the pump. I knew it would prolong the pain, but I literally couldn't draw a full breath and was too exhausted to care. It took the edge off, nothing more. That said, I got more pain relief this time than I did when I lost the twins and was on narcotics and NSAIDs, so that was beneficial. Sometime in the morning, the nurse came. I still had a catheter, but really felt like I needed to urinate, so I asked her to remove it so I could go. Initially she just asked me if I'd tried to push to pee with the catheter in - rather than helping to remove. Eventually she took it out, and DH helped me stumble to the bathroom. I peed, which caused burning in my incision, but otherwise was fine. The next time I peed, about an hour later, I got the explanation for why the catheter hadn't worked: a decent amount of air came out along with urine. That would have impacted the catheter, and wasn't good for me. Once again, the UC nursing staff missed something.

Eventually Dr. Haney came in. He said the cerclage itself had gone well - 3 bands placed, but then commented that I had serious digestive system issues. Apparently he thought my colon was the worst he'd seen in 20+ years - it was so bad that he called the intern to scrub in so she could feel it. I'm not going to lie, hearing that some random intern had her hand in me and squeezed my now utterly agonizing colon really irritated me. First, it's rather rapey to do that to an unconscious patient, and second, the last damn thing my poor colon needed was someone else messing with it. Haney commented that his wife has similar issues, and her GI encouraged her to do a colon resection to address it. This is not the first time major GI surgery has been suggested to me. Haney said the same thing my past doctor did - wait until it's a lifestyle issue, then address.

I asked Haney for an ongoing rx for Reglan for the next few days, and he agreed because it would help restart my digestive system. I also asked for ambien, as I find my sleep schedule gets really messed up from anesthesia. He wrote both prescriptions, told me that he'd write me out of work on STD for a month, although I could return earlier, and said I was good to discharge. I badly wish I had felt better so I could have celebrated how well the TAC went, but I was in such bad shape I didn't care.

Originally I had booked a room at the LaQuinta because the Hyatt was much more expensive. At this point, with the agony I was in, I had DH change reservations. The Hyatt was great, got a room with early check in for us. I was discharged around 1. I had been worried that with my "23 hour hold" at the hospital, they might discharge me before I had anywhere to go, but the day nurse said she'd be happy to hold me as long as needed - it meant she probably wouldn't have to admit another patient before her shift ended! My discharge instructions were a hot mess. Despite my chart saying everywhere that I'm allergic to NSAIDs, discharge instructions said to use percocet and aspirin every 4 to 6 hours. There were other errors in the instructions but that one was the truly dangerous one. One more example of how bad the University of Chicago hospital was.

DH had to help me get dressed, between the surgical and intestinal pain, I couldn't even raise my feet up to put my own socks on. A hospital "patient transport" person was assigned and was going to take us directly to the car in the parking structure. Since I get cold extremely easy, and I was terrified of shivering with the abdominal incision, going out into the 30 degree structure seemed a poor choice. DH asked the transporter to please leave me somewhere warm while he brought the car around. That concept took a long time to convey, but the lady was super nice.

The Hyatt had a wheelchair, so DH checked in, got the wheelchair, and then got us and our stuff up to our room. We were in a block with a whole foods and a nearby CVS, so DH left to get some food for me and to get my prescriptions. At this point I was still having to use the percocet every 4 hours, and the tylenol every 6. DH brought back great food options, but all I could get down were a few bites and then the pain was too much and I stopped. I think I watched some Law and Order, and went to sleep. DH went back out and got himself some deep dish Chicago pizza.

During all of this time, the surgical incision was sore, and it burned like mad when I had to pee, but wasn't horrid. The entire length of my sigmoid colon felt like it was being stabbed repeatedly, and my whole abdomen was painful to the touch. I couldn't pass gas in either direction, or get anything moving in my GI system, and it was awful.

Sunday
We had planned to drive home Sunday. Although I still couldn't take a full breath, and didn't want to contemplate 8 hours in the car, I was terrified that eventually my digestive system was going to let loose, and I didn't want a blow out in the car. DH loaded me up on meds, went and bought Depends and wet wipes as an emergency measure, and we set off around 10-11. Talk about reaching a new low.

The drive was miserable. One side effect of all the swelling was that I couldn't feel the need to urinate. I was also not sure I could make it from the car to a restroom, so I was really worried. About 5.5-6 hours in, the pain got worse despite the meds and worst of all, I started to have muscle spams down the left side of my abdominal muscles, where the pain was already the worst. When it was happening, I couldn't breathe at all. Eventually it got so bad I told DH he needed to pull over. I knew if I couldn't stop the spams, I would need to find a hospital because I wasn't making it home. I legit thought I was at risk of lung collapse or just hypoxia from being unable to draw a breath. I also thought I might need to pee, but there seemed to be absolutely no way I could get from the car to a potty. DH stopped at a random diner somewhere in the middle of nowhere in Wisconsin. I asked him to figure out where the restrooms were, and he did, then moved the car as close as possible and helped escort me in. Standing up and moving, as hard as it was, helped, and peeing helped even more. I still couldn't breathe deeply, but the spasms stopped. Random Wisconsin diner, thank you - I owe you more than you know! We decided I would take an ambien to see if I could sleep, since part of the problem was muscle tension (confession: DH drives a bit aggressively, and when I know that's happening, I freak out and tense up - that was part of the issue).

I texted my family waiting at home to ask for specific food and to ask them to put a sheet on the sofa so I could sleep on the main floor if I couldn't walk down stairs, and to make up our other guest bed in case I could walk downstairs. Our waterbed, in the master bedroom upstairs, was a clear impossibility because it's low to the floor and hard to get out of normally!

We arrived, I had a bit of food, crashed on the sofa, then shuffled downstairs to the guest bedroom and crashed there. DH made himself a bed on the floor next to me, and set alarms to make sure I woke up to take pain meds at all the right times.

Monday
Monday was more of the same. Some pain control with the meds, but still tough to take a full breath. I got my first shower. DH had to help me with my socks again, but I dressed myself otherwise. At this point I'd been on Reglan since Saturday morning, AND been taking peri-colace, miralax, and cirtucel. Still, no movemenet until just before bedtime. I can still no longer tell when I need to pee, and there's still intense burning and bruising along my incision line.

Tuesday
GI swelling is finally starting to reduce on the right side of my abdomen, and the pain is dropping a bit. Surgical site pain is getting better. DH gets busy with work, so I get a shower on my own with no issue. GI floodgates open and I'm constantly using the toilet, which in turn triggers other problems. Stop taking percocet mid-day. Remain on Tylenol 325 every 4 hours. Make sure to get up and walk laps around the house every hour, and it's going ok.

Wednesday
DH leaves for a work trip. GI pain continues to reduce, surgical pain is clearly getting better. Swelling down - can see my hip bones again! Able to move my hips using my ab muscles for the first time when rolling over in bed! Very excited. Constant bathroom trips after severe lack of bathroom trips has resulted in a thrombosed hemorrhoid. Also, the constant wiping gets the skin very irritated. I find myself wondering how in the hell people have/enjoy anal sex. Pain from an entirely new part of my GI system is not wanted! Push Tylenol out to once every 6 hours. Am finally able to take full breaths with only mild pain! No longer burning around incision site and incision bruising is gone, although what appears to be a thumb-sized blood blister remains on the left.

Thursday
Thursday AM goes well. Similar to Wednesday. Hemorrhoid pain getting worse, GI pain getting better. About 5 pm, all that changes, and I'm back to knives stabbing my colon and an inability to take a full breath. At this point I'm only on Tylenol and I don't want to change that and add percocet back, so I try to solider through. I have to cough, and despite holding a pillow to my stomach, I start my incision bleeding. Can't stand to be touched on the left side of my abs. I am unable to sleep because the pain is so bad when lying down that I can't breathe at all. Drowse after midnight while propped up in bed with pillows.

Friday  - well, I guess I'll split this into 3 posts! So far I've gotten a shower and been off all pain meds, but still have a stabby colon. I will not be returning to work Monday like I'd planned, nor will I get to cycle again in November. I'm sad, but my body is really jacked up and needs time to heal. Hopefully part three of this note will be better.

Oh - and as a side note, remember the mice? E-gads, they've taken over. :( Dad has trapped 10 since he arrived on Saturday. Bless my amazing family for dealing with me and all of this.

TAC Experience - Part I

​​​​​This will probably be long, so I'l split into two posts, but I wanted to capture what I remember from my TAC experience. Please be warned, I had some unusual complications, so this isn’t an easy/happy or normal story. Unless you have digestive issues like me, don't assume this will happen to you!

Tuesday
This was our twins’ first birthday.  I had wanted to recognize the day by writing a letter to them and burning it in our wood stove after having dinner out with DH. Instead, DH decided over the weekend that we need to recaulk/re grout our huge master shower. We limited it to caulking, but it was still a four day project. I spent most of my day getting the house ready for my dad and step mom, stripping caulk from the shower, and then trying to clean some of the innumerable bits of stripped caulk from the bathroom floor. I didn’t have time to get ready for dinner and never vaguely had a chance to think about my letter or the fire. The priority was having a shower when I got home from the hospital and wouldn’t be able to move. As it was the bathroom was a complete mess when we left, with tools, chemicals, and bags of supplies everywhere, plus caulk scrapings everywhere but the floor. Not a good day.

Wednesday
I got one last good workout in, and we headed out to Chicago. Just to add to the fun, as I went to throw out all the trash in the house before leaving, I discovered that we had mice who and apparently arrived en-masse and chewed through our trash bags. Sent an apology note to dad and SM and left anyway, as there wasn’t much we could do.

I drove for the first 4-5 hours while DH worked, then he took over. Chicago traffic was awful. We got to our hotel around 6, and got upgraded. Highly recommend the place: The Guesthouse, in Uptown. We walked to dinner. I got a rice, kale, and sweet potato bowl with Thai peanut sauce and it was terrible - inedibly salty. I was too hungry/hangry  at that point to find a new place to eat (it was also below freezing, windy, and a 3/4 mile walk to our hotel), but the manager refunded my meal. DH took me to Baskin Robbins, and then we returned to the hotel for the best night of hotel sleep I’ve ever had.

Thursday
I had grand plans to do something fun in Chicago this day. Instead I had a two hour work meeting, we got breakfast at this amazing cafe, then spent way too long driving to find the hospital complex and the hotel for afterward. We got Thai for dinner and it was good. Side note: it’s really hard to find gluten free vegetarian food in Uptown. I was really disappointed. I was NPO after midnight.

Friday
I had to check in at  7:30, and we were worried about traffic, so I was up early and got a shower. Didn’t hit any traffic. Parked in structure A ($18/day with validation) and went in to the DCAM same day/ambulatory surgery for check in. They gave me a number so DH could track my status on the monitors, and then I waited.

Just after 7:30, a pre-op nurse came and got me. She confirmed my name, dob, allergies, and had me give a urine sample for a pregnancy test. I got three bracelets - one for allergies (it just said “multiple” since she didn’t write them all down), two identifying me. Then I changed and put all of my clothes and belongings into a plastic garment bag. Next up was an IV. I’m allergic to adhesives and they had very few choices for me, far less than my local hospitals. That was suboptimal. I was told my temperature was 99, which is very high for me, but not high enough to postpone surgery. I suppose that might have been a harbinger.

Once I was set with a warm blanket, DH came back and kept me company. First a resident came in, confirmed the surgery I’d be having, and then had me pull up my hospital gown so she could write her initials on my abdomen. Apparently they do this to make sure they’re operating on the right part of the right patient? Either way, I’m not thrilled still having her initials on me as I don’t really want to scrub hard that close to the incision site and the ink is. .  . Tenacious!

A research assistant came in and asked if they could take a tissue sample during surgery for research on ovarian cancer. I asked what the risks were and she couldn’t answer. That lack of professionalism plagued my stay. I felt oddly pressured, but as the daughter of a breast cancer survivor, agreed.

The anesthesiologist came in and told me that since I’m not pregnant, I had the choice of general or spinal. He also said that if I was pregnant, Haney would require general, to make sure I didn’t move at all. Most importantly, he told me that if I did the spinal, he could still use enough profofol that I wouldn’t know what’s going on, but he wouldn’t have to intubate me. That sounded good to me.

Haney came in, and reiterated a lot of what he’d told us during our consult. Then it was go time. I got one last hug from DH, and was wheeled into the OR. Everyone kept talking about what an ideal patient I am - I guess I have a nice spine for a spinal! :) I met all the OR nurses, got moved onto the operating table, got the ekg leads placed. A nurse set up a surgical instrument tray/stand with pillows, and the anesthesiologist had me sit up and lean over it. I remember him asking about glove sizing and that’s it.

Dr. Haney tells me that at one point during the surgery when they were tugging very hard, they heard my voice from over the drape asking to be knocked out further. I’m thrilled to report I don’t recall.

To be honest, I don’t recall waking in recovery, either. The first thing I remember is the feeling of being wheeled somewhere. Someone told DH or I that I had a pain pump to use, and then I was left in my “observation” room.

When I was lucid, I was in an insane amount of pain. Not from the surgical site, although I could sure feel that, but from my digestive system. It felt like someone was stabbing knives through my colon, constantly. I know my body well enough to be aware that’s what happens when my colon shuts down and gas starts to build. It was so bad I couldn’t draw a full breath. I knew that narcotics would make it worse, so I didn’t want to use the pain pump. DH and I asked, over and over again, for hours, for an alternative, and were just repeatedly told to push the button on the pump. It was an awful frustrating experience, to be in absolute agony, unable to breathe, and we couldn’t even get a doctor to come tell us there were no other options than narcotics.

Somewhere in there, I started throwing up. Puking with an abdominal incision is a special kind of hell. They wanted me on zofran, but that causes the same digestive problems, so that was a no-go. There are three things I know I can't have if I want my digestive system to work: sudafed, zofran, and narcotics. The hospital had me on two of the three.

After hours, the resident on call came in and told me to take the pain pump and the zofran, in a pissed off tone. I told her the problem wasn’t surgical pain, it was digestive, that zofran and narcotics would worsen it. She didn’t say anything useful. I asked for reglan instead of zofran, because reglan will cause the digestive system to speed up, doing exactly what I needed, and will reduce nausea. She agreed to that and left.

That was my night.

Clear!!!!

Emerged from 3 hours of meetings today to find a voicemail from my OB: No evidence of CE via histology on the biopsy!!

That was the last hurdle before the TAC, so it's really nice to have it done. I'll hope to have more good news in the coming weeks and months.

When Formalin is Not Your Friend (aka: Biopsy #3)

In general, I like my OB. Far more important than liking her, I think she's competent and will work with me on my care. Yesterday was not, however, one of our finer days together.

I went in for what I hope will be my last biopsy. She asked if I wanted to get three samples again: one for histology, one to culture for bacteria, and one to culture for yeast. Only the histology was positive last time, so it was reasonable to ask if I wanted to go through the unpleasantness of three samples. On one hand, I really hoped there was no need, and had no expectation of a need for bacteria or yeast cultures. On the other hand, if the histology comes back positive, I don't want to have to wait for another cycle to get another biopsy for bacterial culture. So we agreed to get three samples again.

She got three samples. I got up and got dressed. Just as I was about to walk out, she came back in and told me she'd put all three in formalin by accident, and you can't culture a sample that's been in formalin. If I wanted bacteria and yeast cultures, I'd have to do another biopsy.

Bloody hell.

Since we'd already run a catheter into my uterus once for the initial biopsy, it increased the chances of pushing in new bacteria and getting a false positive. Also, those biopsies are no bloody fun. I didn't want another. So I declined.

Let's hope the histology comes back negative for CE.

Other interesting notes:
October 30, 2016 was the day my water broke with the twins. During the biopsy, I mentioned to my OB that it happened a year ago. She commented that it must have been scary for me, and that she was scared, specifically that she was scared during my delivery a week later. I knew things were bad during delivery, but hearing that they were bad enough for my OB to be scared. . . I guess that's why my Dad, who saw them wheel me out to surgery that day, encouraged me to think about my own health before continuing to try to get pregnant.

I've had bleeding since the biopsy. More bleeding than my last period. I'm trying to tell myself that it's a good sign that my lining isn't shot. I have no idea if that's true or not, but it's giving me hope so I'll hold to it!

I told my OB that if I'm able to get pregnant again, I'll be coming to see her pretty early on, since I'll want the NIPT referral as early as possible due to the TAC. She told me she's happy to see me weekly if I'm pregnant again. She may regret saying that! :)

Who Moved My Zen?

Emotions are a roller coaster.

DH and I relocated to Minnesota four years ago. We love it here, but it's hard to make friends. Heck, it's always hard to make friends as an adult, but here in Minnesota, it's so hard there are even books on the topic of "Minnesota nice" - this concept that Minnesotans are super polite, but already have well established social networks and have no interest in making new friends. I've found that painfully true.

DH and I are both into bicycling. I've missed the last few seasons for medical reasons, but DH has kept up. I was really excited when he suggested we get together with a cycling buddy of his and the buddy's wife. Dinner was suggested and I was asked for a restaurant recommendation. There's a place DH and I enjoy, called Red Cow, so I suggested that. Turns out the other couple really like that place, too. Total win, dinner planned for yesterday.

Minutes before we're to walk out the door, I realize something. Exactly a year before, I was 16w6d pregnant with the twins and my mom was here visiting. We went out to Red Cow with her that afternoon. I got sick that night, something that seemed like mild food poisoning. The next morning my water broke around 7 am. 

Why the hell did I have to pick Red Cow? Why didn't I remember what day it was until that moment? Why couldn't I have forgotten that detail? Zen: shattered. Roller coaster: on the downswing. 

Past and Future

Today marks two weeks until surgery. Only a few days until my next biopsy. If all goes well, it's less than 30 days until I'm cycling again. I am suspicious that getting pregnant again is going to be somewhere between 'a lot more difficult' and 'impossible'. Why? Because even though I took estrogen this cycle, my period was 2 days of what could barely be classified as more than spotting. I'm worried my lining is totally and irrecoverably shot.

I am oddly zen about it all. Yes, the surgery is unnecessary if my lining 'can't get it up' as it were. But since we won't know about my lining until we cycle, and I absolutely will not cycle without the surgery, well, it all falls into the category of 'it will be what it will be.'

Tuesday was three months since we lost Quinn. The twins' first birthday is coming up. I don't feel right calling it a birthday, but there isn't another term I like better. Others just feel too cutesy (angelversary) or too harsh (stillbirthday). Let's just say that it's almost a year since we met and lost them. In some ways, it seems like it was yesterday. In other ways I can tell that I'm doing better than I was, even a month ago. I am having fewer bad days. The seasonal triggers produce moments or hours of memories and pain, not days. While medical stuff is on my mind a lot, when I think about my babies it's with love and longing, not the overwhelming grief I've felt recently. The only thing that makes me not zen is remembering that Quinn should have been born, at term, a month from now. Remembering that breaks my heart in a completely un-zen-like fashion.

At this moment, with the future still unknown, I'm ready to move forward even if moving forward doesn't bring us another pregnancy. I think that's the zen talking. I hope I can hang on to this zen in the coming months.

Fetal Membranes and Alpha Lipoic Acid, Continued

Before I end my treatise on fetal membranes, I thought it would be helpful to share an image of the layers of the fetal membrane. This is from a journal article, Extracellular Matrix Dynamics and Fetal Membrane Rupture (2013), Strauss, J. F.

Here's a quote from the article that I found telling: "It has been hypothesized that fetal membrane rupture involves a sequence of events that starts with distension and loss of elasticity, separation of the chorion and amnion, disruption of the chorion, distension and herniation of the amnion, and finally amnion rupture. This proposed sequence of events appears to be the result of structural alterations in ECM with resulting biomechanical changes in the membranes, primarily the amnion, which is the strongest component of the fetal membranes. Since cervical insufficiency is often associated with PPROM, it is likely that preterm cervical changes facilitate the unscheduled rupture of membranes in PPROM."

There are other articles out there that talk through specific dynamics of what happens to the various layers, if you're interested.

Finally, let's talk alpha lipoic acid (ALA) again.

I realized it might be useful to list the dosage that I've found in the research for alpha lipoic acid as it relates to prevention of pprom. The best study I've found so far is actually focused on prevention of PTL, and it found a massive reduction in risk from a daily dosage of the following: magnesium 225 mg, alpha lipoic acid 100 mg and vitamin B6 1.3 mg - 1x/day. Now, let me say that the reduction is so massive that I am really suspicious of the article. Either they're not correctly describing the population of study participants, or this is too good to be true. But it's probably worth a read if you're interested in research on this topic. Study: Efficacy of Magnesium and Alpha Lipoic Acid Supplementation in Reducing Premature Uterine Contractions (2014), Parente, et. al. I'll probably do a lot more reading on this topic and post anything I discover in the future.

The majority of studies I've found looking at alpha lipoic dosage in humans related to patients with diabetes. In that case, I am routinely reading dosages of 600 mg/day.

I also found a study that made my heart go pitty-patter: pregnant women with subchorionic hemorrhage. Those given both alpha-lipoic acid (300 mg 2x/day) resbsorbed the SCH more quickly than those on progesterone alone. See: Alpha Lipoic Acid (ALA) effects on subchorionic hematoma: preliminary clinical results.

I also found a single study looking at ALA with IVF patients. It found a higher number of grade 1 embryos in patients taking ALA plus myo-inositol . See: Effect of myo-inositol and alpha-lipoic acid on oocyte quality in polycystic ovary syndrome non-obese women undergoing in vitro fertilization: a pilot study. While that study is interesting, the population is small and using the patients as their own controls is really problematic - so take the results with an entire shaker of salt.

Beyond that, there are many studies using rats and suggesting that ALA protects against reactive oxygen species (ROS) which are correlated to damage to DNA and RNA and are considered agents of cell death. All sounds good, right? Sure, but be aware that ALA is also associated with effects on fetal hormones (protective effects, but effects none the less). In other words, do your own research and think very carefully before you consider taking it.

Infectious Diseases Specialist Visit

With the crappy news of another operative hysteroscopy, I got distracted and never posted about our appointment with the Infectious Disease Specialist at the U. Overall, it was a good experience. The TL;DR version: the initial CE finding was probably due to retained POC. It's probably unnecessary, but I can do 14 days of doxy and repeat the biopsy.

Here's the long version: The doctor (who was very pregnant herself) was extremely thorough. She spent well over an hour with us and walking through my complete medical history, going back to childhood. She even sent a follow up note to me asking if I'd had blood clots in the past, because she'd spoken to a colleague who is a rheumatologist, to see if my history of juvenile arthritis (JRA) might be playing a role.

The downside of such a long conversation and discussing so much history is that the conversation was a bit meandering. It's hard to tell the red herrings (JRA, recurrent sinus infections, 12+ years of incurable infection in two of my toes) from the relevant (chronic endometritis, recurrent UTIs). She mentioned something that I thought was really interesting, if frightening: in a proportion of women with recurrent UTIs, there seems to be a chicken and egg issue, where the surface of the bladder is inflamed, and that inflammation makes it more prone to bacterial growth/infection. No one is sure which comes first: the inflammation, or the infection. It can be really hard to break the cycle. This could be what's happening with my uterus, but there's no clear treatment approach if so.

She thought the CE from the biopsy might simply be because of the amount of debris that was in my uterus - retained placenta. She wanted, partly for research, partly for me, to have me do another biopsy before starting antibiotics. Our initial discussion was that we would do the biopsy, and if the CE is gone, I wouldn't do any antibiotics. However, I realized that with the FemVue, I would have to take a few days of antibiotics. Once we discussed that, the doctor agreed that if we were going to be on 4 days of doxy, we might as well do the 14 days of doxy that would be the normal first line treatment for CE. So, the plan was: biopsy and Femvue on 10/4. 14 days of doxy starting on 10/14. Repeat biopsy when my next cycle starts.

Of course, we didn't account for the repeat hysteroscopy in the plan, but it doesn't really change anything. I finished my doxy yesterday morning, and I'm now booked for what I really hope will be my last biopsy on the 30th. The pathology from this last hysteroscopy came back with no evidence of CE (YIPPEE!), and also no retained placenta. It appeared there was just a bit of scar tissue.

Preventing Fetal Membrane Rupture

Given my history, I'm quite interested in pPROM, and what might be done to reduce the risk of pPROM. The obvious answer is to prevent bacteria from ascending into the uterus, which we're hoping to accomplish via the TAC and clearing out my chronic endometritis. Beyond that, though, I wanted to learn more about fetal membranes.

Below are a selection of research articles I found. I've mostly included those that found consistent results. This is why you won't see any studies on Vitamin C below, as C has mixed results with respect to FM rupture. The caveat: read these and make your own decision, and note that the researchers are often the same across these studies. I will say that if I"m ever pregnant again, I intend to stay on progesterone (P4) and take Alpha-lipoic acid.

Fetal Membrane structure (FMs):
Fetal membranes are composed of two layers, the chorion and the amnion. During pregnancy, a weak zone in the fetal membranes typically develops over the cervix. This is the spot that typically ruptures during a normal labor.

In various modeling and testing, the amnion is the most important component of FM with respect to strength. Thinner amnion and chorion are correlated to lower strength and greater risk of rupture.

See: Function and Failure of the Fetal Membranes, (2017) Verbruggen, et. al.

Etiology of FM rupture:
When looking at the weak zone that appears over the cervix in a healthy term pregnancy, researchers find remodeling of the collagen that makes up the FM. Inflammation/infection and bleeding/abruption both produce the same collagen remodeling effect, when modeled using TNF (for infection) and Thrombin (for abruption).

See: The physiology of fetal membrane weakening and rupture: Insights gained from the determination of physical properties revisited. (2016) Kumar, et. al.

Correlates with FM strength:

"The dietary supplement α-lipoic acid and progestogens (P4, MPA and 17α-hydroxyprogesterone) have been shown to inhibit both TNF and Thrombin induced FM weakening. The progestogens act at multiple points by inhibiting both GM-CSF production and GM-CSF action."

See: The physiology of fetal membrane weakening and rupture: Insights gained from the determination of physical properties revisited. (2016) Kumar, et. al.

Alpha-lipoic acid moderates the impact of both TNF and thrombin on FM. "Treatment of FM with 0.25 mM LA completely inhibited thrombin-induced FM weakening and MMP expression (all p < 0.001). Thrombin treatment of cultured FM induces mechanical weakening and increased MMP3 and 9. Treatment of FM with LA inhibits these thrombin-induced effects. We speculate LA may prove clinically useful in prevention of PPROM associated with abruption."

See: Alpha-lipoic acid inhibits thrombin-induced fetal membrane weakening in vitro. (2010), Moore, et. al.

"TNF and thrombin both weakened fetal membranes and elevated media GM-CSF levels on the choriodecidua side of the fetal membrane. Pretreatment with progesterone, MPA (medroxyprogesterone acetate), or HP (17α-hydroxyprogesterone) inhibited both TNF- and thrombin-induced fetal membrane weakening and also inhibited the induced increase in GM-CSF. GM-CSF decreased fetal membrane rupture strength by 68%, which was inhibited by progestogen pretreatment with a potency order: progesterone <MPA <HP"

See: Progesterone inhibits in vitro fetal membrane weakening. (2015). Kumar, et. al. 

Nothing Much

There's nothing much going on here, which I hope is a good thing.

A quick glance in my pill bottle tells me I have 4 doxycycline left! I have no side effects or symptoms, so I'll just hope they've done their job.

Last Friday I received the order for the repeat Infectious Diseases screens for DH and I. I still think this testing is utter bullshit, since we're using TI and have been through multiple screens in the last 16 months. We pose no infection risk to anyone at the office (and shouldn't even if we were carriers, given the need to follow UP). Alas, sometimes you have to wade through bullshit to get what you want, so in I go.

It's looking like I'll get my screen and my repeat biopsy done around 10/31, which should be CD6. Of course, by having written that, I'm sure my cycle won't start as expected! I have 25 days left until surgery. I'm trying to make the most of the time - back to daily workouts and a fairly clean diet. Once my next period starts, I'll go hardcore on the clean eating. I doubt it makes a difference, but I also don't think it hurts, and I continue to want the comfort of feeling like I've done everything within my control in this utterly uncontrollable situation.

If everything goes well with surgery, I'll have to make a decision about when to start cycling. Dr. Haney told us he wanted us to have one period before going back to the RE. If my cycles stay roughly the same as they have been, that should mean CD1 falls about 10 days after surgery. If I do well, it shouldn't be a problem to start stims then. Given my age and insurance coverage, I'd much rather cycle in November, but I'm not sure what will give us the best chance or be the best for my body. I guess we'll wait and see.

Lessons from Surgery

I realized last night that having had seven surgeries in less than two years, I might have some advice that's helpful to anyone else preparing to go through gynecological surgery. Thus, here are my "credentials" and also my experiences/advice.

Surgeries since 1/18/16:

1. D&C for missed miscarriage - Jan 16
2. Operative hysteroscopy to remove scar tissue and retained POC from missed miscarriage - May 16
3. Emergency D&C due to postpartum hemorrhage - Nov 16. To be fair, they did two of these, since I Started to hemorrhage again while in recovery before regaining consciousness.
4. Operative hysteroscopy to remove scar tissue and retained POC from losing the twins - Feb 17
5. Rescue cerclage placement - July 17
6. Operative hysteroscopy to remove scar tissue and retained POC from losing Quinn - Sept 17
7. Operative hysteroscopy to remove scar tissue and retained POC from losing Quinn - Oct 17

Things I have learned throughout this process. These may only apply to me, but I thought it was worth sharing:

• If you can, get a morning surgery. Going without food until an afternoon time slot makes an unpleasant day worse.
• Be aware that even though you're groggy, you'll have awful insomnia starting around midnight the night of/after the anesthesia (this applies only to the general anesthesia and not the spinal)
• Be aware that you'll stay groggy the day AFTER surgery.
• Know that it's ok to ask to have the IV placed in your arm, not your hand - often that hurts less. Either way, plan on about a week of bruising from it.
• Expect 2-3 days of sore throat from the anesthesia. How sore will depend on how long you were under. 
• If you're allowed, plan on a shower as soon as you get home - different hospitals do a better or worse job of cleaning up the betadine they use on you, expect that you'll still be orange in a few places until you can shower. 
• If you're outpatient, be aware that the doctor will tell the person you came with the outcome of the surgery. This means that if you have specific questions you want answered, make sure to tell that person. I expect my DH to know what's going on and ask the right questions, but in reality, all he's able to process without specific guidance is, "It went well."
• Wear comfy clothes and a bra that are easy to get back on. At the hospital, a nurse dressed me while I was in post-op. At the surgical center, I had to dress myself in the tiny pre-op/recovery room. In either situation, you want easy to doff/don clothing. 
• If you get cold easily, bring a jacket you can throw over your shoulders while waiting. Yes, hospitals and surgical centers have warm blankets, but they're often about 2" by 2", so it's tough to really bundle up! My local hospital offers a warming gown, but the surgical center doesn't, so having a jacket over my shoulders while waiting to be taken back for surgery was awesome.
• Have a pain management discussion with your doctor before you go under. My first two surgeries, I was given narcotic painkillers and rx strength ibuprofen. I never needed the narcotics, I did appreciate the rx strength ibuprofen. Surgeries 4, 6 and 7 we never discussed pain management, and since I can't take NSAIDs, I went without once home. That's ok by me, but if it's not ok with you, be sure to discuss with your Dr.  
• Have a plan for what to do when you get home. My plan is Netflix under a blanket on the sofa, but figure out what low-energy thing will be a treat for you, and have it ready.  

Most of all, my advice is that you CAN get through this, no matter how scary it seems. 

Still Not 1/18

I spent quite some time trying to come up with an appropriate title for this post. A few I tried on:
You've Got To Be Kidding Me
Really, Uterus?
Again!?!
Motherf*cker!!

That last one still feels the most appropriate.

Today was the repeat endometrial biopsy and FemVue. The FemVue's goal was to check my tubes and make sure nothing was left in my uterus. Tubes looked great. Uterus? Not so much. Don't know if it's placenta or adhesions, but up near the fundus something remains. It was obvious enough I could pick it out on ultrasound, and I suck at reading u/s.

I'm not surprised - my period has been unusual, and there was fluid in my uterus before they started the FemVue, which didn't bode well. Alas, this means another operative hysteroscopy. If it means another week with a stent . . . if it means another week with a stent I'm thinking very hard about canceling the surgery and giving up. Because a uterine catheter is hell. Just hell. No better description. Surgery is booked for Friday, and if I think too long about it, I'll back out because I'm just not up for that hell again.

So I won't think about it, I'll just do it.

Oh, and for the record, today's biopsy hurt a lot more than last month's. The FemVue didn't hurt at all during, but I still have odd abdominal tenderness afterward. Fun times.  

Chronic Endometritis

On Monday, at 7:00 am, I go to see an Infectious Disease specialist at the U. The main focus of the discussion, I expect, will be the chronic endometritis that has now been diagnosed. I'm also expecting a side dose of 'why was I still culturing ecoli after a week of clindamycin?'

In preparation, I'm printing a few CE resources. I may have included these in previous posts.  . . what can I say, my memory has never been what it used to be! Still, having these in one place might be helpful for someone, so here we go.

December 2016 review article on the subject 'Chronic Endometritis and Infertility.' This references the links to repeat pregnancy loss (RPL), IVF implantation failure. It discusses diagnostic criteria, pathology, and treatment.

• Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5234283/

May 2014 article on the subject of 'Chronic Endometritis Due to Common Bacteria is Prevalent in Women with Recurrent Miscarriage as Confirmed by Improved Pregnancy Outcome After Antibiotic Treatment.' The title kind of gives away the ending, but this shows tables of outcomes by CE status before and after treatment.

• Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3984485/

I don't have a full text link for this one, but it's a reseach review of Chronic Endometritis: Potential Cause of Infertility and Obstetric and Neonatal Complications.

• Link: https://www.researchgate.net/publication/283011984_Chronic_Endometritis_Potential_Cause_of_Infertility_and_Obstetric_and_Neonatal_Complications

I'm also planning on giving my OB copies of the first two papers. Maybe she'll get offended and won't take them, like the OB at my previous practice. Maybe she'll take them and never read them. But maybe I'll help provide some additional information that can benefit future patients. Of women with RPL, 50% don't find an explanation. I suspect, from the growing body of CE literature, that CE explains a proportion of that 50%. If only we'd found and treated it a year ago, who knows what might have happened. 

eColi: 1; Clindamycin: 0

After the positive biopsy, my OB put me on a 7 day course of clindamycin. I've been given clindamycin before - 48 hours via IV when I lost the twins and another 12 hours after the rescue cerclage. My experience then, as now, is that clindamycin has the side effect of causing an awful taste 24/7. I don't know what gasoline tastes like, but if I had to guess, drinking gasoline tastes exactly like being on clindamycin.

You'd think that a week of gasoline would have some beneficial effects. After a week, when I had the stent removed, I mentioned to my OB that I felt like I had UTI symptoms. She took a urine sample, but wrote off the presence of white and red blood cells as the result of removing the stent. So I went an extra 4 days with UTI symptoms before getting the call. . . that urine sample culture positive for ecoli. Of course this leaves me highly confident that my uterus will be bacteria-free. Plus side: one more piece of data to discuss with the Infectious Disease specialist.

Filed Under the Category Of:

Really good news: The stent is out! For at least a few weeks, I have my body back to some state resembling normalcy.

Helpful news: My perinatologist was able to find an in-network OB to do a FemVue, so I won't have to pay my RE entirely out of pocket to check tubal patency. That's a huge relief.

Upcoming news: I have the infectious disease appointment on the 2nd and the FemVue on the 4. Depending on what ID says, I'll probably also have another biopsy on the 3rd. Oh boy!

Emotional news: I know, logically, that grief isn't linear. That said, it's still really rough when I'm doing ok for a few days and then suddenly have a day where I'm not doing ok. I'm grateful that I'm now having more good days than bad ones, but I still have moments where missing the girls just takes my breath away. I'm still sleeping with Quinn's blanket on our bed. We had hoped that it would soothe her some day, but instead holding it is the one thing that helps me relax when I wake up in the middle of the night and can't stop thinking about them. I guess 37 isn't too old for a "blankey"?

Same Bat Channel, New Bat Time

Wednesday's surgery went ahead as scheduled. When I came out of surgery, I was told that my doctor had removed some scar tissue, and quite a bit of retained placenta. They gave me the photos from the hysteroscope, which I've included below, along with a comparison photo of my own uterus, in a "clean" state after my very first operative hysteroscopy. If you don't want to see the inside of my uterus, look away now!

Clean uterus in 2016

Here are two from yesterday:

Left uterus -retained POC & scar tissue

Right uterus -retained POC & scar tissue

This leads me to ask my body: "What is up why you, hmmm? How is it that you hold on to placentas for so long, but you can't hold on to the babies in them long enough? What the heck did I do or not do to you to make this happen every time? WFT, body?"

Probably not the most helpful conversation I've ever had. I'm trying really hard to be hopeful that this worked and will be worthwhile.

I'm not sure if it was because this surgery was more extensive, or because my body is just tired, but I'm in more pain this time that usual. I've been really lucky that with all my past surgeries, I've had some cramping, and I've felt like someone used a serrated-edged, 8" diameter speculum to access my cervix/uterus, but I haven't had much pain beyond that. This time is different. My vagina is really raw and unhappy, my cervix burns, and my uterus keeps sending off stabbing pains and gnarly cramps. I guess that's to be expected and I should be really happy that it wasn't the case before!

Next steps: follow up visit and removal of the stent on Tuesday. We'll need to discuss the pathology for what was found in my uterus, the cultures from the biopsy last week, tubal patency, and what comes next. Exciting, no?

Oh and one final note to the surgery center: If you give patients specimen cups with their name, age, and gender, and have them give samples in the bathroom so you can confirm there is no pregnancy, it's probably unwise to throw the empty but labeled cup and the test stick into the open trashcan next to the sink in the bathroom. Because I looked down while washing my hands, I now know more than I want to about the other woman getting a hysteroscopy that day.