What a wild week, and it’s only just begun. Sunday, I ate a brunch salad, that I made and unfortunately bit into a slug. Knowing that rat lungworm is a potential here (although rare I thought in my area of the island)… I started calling the hospital, poison control, my midwife, and ND / MD friends. Getting a tip that the university here in Hilo is the best resource I began systematically calling each phone number in the Pharmaceutical Colleges number from the UH Hilo website. It’s a Sunday afternoon surely no one will answer… Then I began calling them all, again.
Finally, an angel at the lab answered, with a web link to a protocol the university had created for treatment.
She assured me the risk of exposure was low, due to my residency area and the area I purchased the kale from being in my neighborhood. However, due to pregnancy I decided to take it serious and start with immediately taking the over the counter medication. My midwife was encouraging of this choice, and I was unable to get a physician on the phone due to the Sunday afternoon availabilities of the average GP.
After that, I decided to feel relaxed about the situation. It seemed unlikely anything would come of it and the medication and an afternoon fast seemed like more than enough, if anything overkill.
Monday, I take my slug friend who I had frozen to the university lab. If nothing else I was curious about their processes. I spoke to the lab technician for a great length of time, learning a lot about rat lungworm, the lower likelihood of my exposure due to slug type and the blessing my location… I learned about the Department of Health’s lack of involvement in the processes and walked away wondering why the state handles the risk to its people so minimally and so poorly. I was instantly fascinated that Australia could have such great responses and research, yet we fall behind. As I read about the treatments, I learned how cheap the medications were to make and source in most of the world, yet how prohibitively overpriced they are here in Hawaii, and how insurance won’t cover the cost, so local residents end up not taking the medication. In fact I learned some people mistakingly take Ivermectin, from the feed store. While it is a medication for parasites it can’t cross the blood brain barrier and is useless for rat lungworm.
Feeling responsible, educated, politically concerned, and like a responsible citizen I enjoyed the rest of my Monday. I did the right thing, I learned a lot, I talked to my mother, I joined a Facebook support/educational group, I had some great chats with my MD & ND friends about the state of our states medical care. . . And then I moved on with my day, relaxed and calm.
Today, I ignored my phone… Billy and I had a lot going on, he has the week off for spring break, and we want to make the most of our last times as a “couple without kid(s)”…. We went to the beach, we enjoyed sleeping in, we did all of our favorite things that my body still wants to do! (Ie. hiking not running…. you perverts!) As the afternoon wore on and my emails piled up I checked a few more times for information back from the lab. Perhaps I should give her a call, she did promise to try to get results today.
So I called the lab, and as soon as I identified myself, I heard her tone change. This woman I learned so much from Monday, and I had built a rapport and I instantly knew the answer.
She began apologizing unnecessarily as we culturally as women tend to… She was worried and upset for me, the slug was positive and highly so. Please seek full medical treatment she urged me, worried as her follow up email clarified for me and my baby. Instantly, I texted my midwife. We have a great relationship, and Cosmo is my first priority in making sure what we do is as safe as possible. She urged me to get medication immediately, but I as explained the wait times to get in seemed like such a barrier that she agreed to step out of her scope of practice to write the prescription. The treatment protocol linked above is fairly clear, and the risk to Cosmo’s health seems to be minimal.
On the way to a pharmacy, I chatted both with a MD and ND friends that I highly respect, and were kind enough to blur professional and friendship lines. Both of them agreed treatment was safer than not for both Cosmo and I. Both made gracious caring offers to attempt to source the medications I would need, in the case it was as overpriced as the lab tech told me it would be. You see some of my political concerns began Monday, when I found out the cost of the treatment was over 10,000 for just one medication, that costs a few dollars in the rest of the world. Luckily, I am privileged to be in the middle of an insurance transfer and weirdly just chose to extend my former one, to blend the transfer time with my new insurance. This decision was made on Friday, so you can see the irony in the situation. I even told my contact at my first insurance company that I would like to extend it to make sure there was an overlap… I said ” if I ever went one day without insurance a freak accident would happen and I would end up in medical debt for years”…. Its like I knew something… .
Getting to the pharmacy, I find out the prescription wasn’t filled. She says, “Oh the prescription is $3,000 so we wanted to make sure your insurance or you could cover it.” I said “yes, I have insurance, and I am willing to pay the $3000 not covered.” She said, “ok let me fill it and we’ll go ahead and ring you up. Oh wait, this is a coupon for the medicine to be $3000 off, it’s going to be $12,800.” As I picked my jaw up, I asked, “will either of my insurances offset that?” Checking my cards she said she’d look up that one may help, but decisively stated my new insurance definitely would not. Then she informed me, they don’t have the medicine, can I please pull forward (I chose the drive thru line because of covid ). I wait in the parking lot for 5, 10, then 20 minutes until she calls having finally sourced a pharmacy that did have the medication.
So off I drive to another location, Target in Hilo. As I rush in the store, the days hours are getting less I sigh of relief as I get to the pharmacy, and right as I get to the pharmacist and we begin to speak. I am getting yelled at ? It seems with the Covid 6 foot rule, a line was started in the aisle behind the pharmacy area, and I had just cut it. Apologizing for my flustered idiocy I bit back tears, I just needed to know that the pharmacy had the medication, whatever obscene cost. Finally, my turn in the line and I talk to the pharmacy tech to find out, yes they have the medication, yes they can fill it, no it wasn’t filled when the prior pharmacy told me they had asked them to… Can I shop around and come back in an hour?
Oh sure, why I’d love to go shopping while I ponder if I will be spending $1,000 or $13,000. I chat with my father in law who’s always good for an entertaining chat, regardless of the late night disturbance… I let him know that I was able to find a location with the medicine, that it should all workout ok… as I knew my husband had been talking to his parent and I didn’t want them worried unnecessarily. And then I headed back to the pharmacy, fun Target shopping has been lackluster and left me empty handed, as I brace for my soon to be empty pockets.
“Excuse me Ma’am, I forgot to ask I may have to do some bank transfers. Can you let me know todays total cost perhaps??”, I couldn’t wait the hour, the suspense was making me nauseous. “Oh, sorry I was able to get your insurance to agree, its covered no copay,” she responded. “What?” I blinked. Surely, I was in a daydream. She clarified, “Well they don’t normally agree but if it’s a mistake, just accept it and move on this is a very expensive prescription.” Relieved, but not overly optimistic, I paced around for a few more minutes, before deciding to creepishly wait in the medication aisles. I wanted the medication, more than a druggie looking for their next fix. I just wanted out of Target, away from people, and to be home with the medication and some now to be cooked vegetables (raw increases the risk of exposure) for dinner. I chatted with my best friends from my life before in Japan, and made jokes about all the alcohol I was missing in this moment. We talked about sex lives, acne, and what alcoholic beverage I’d have first. If it wasn’t for these dear women in my life, I don’t know how I get thru any of my small or larger crisis’. I hope I can offer them the same comfort in moments of life oddities we find ourselves navigating thru.
A few minutes later, a hand wave from the pharmacy tech, and a massive bag of medicine taped shut she takes my info, and away I waddle. Now currently carrying two children, on in utero, one in a paper bag taped sketchily shut containing $8599 dollars of drugs I assume I may have to backpay my insurance for when they come to their senses.
As I walk away, I find myself in shock. I let my medical friends, and Japanese life friends know the good fortune. And I head to get gas ( the light was on my entire 28 mile frantic drive to the pharmacies )… and a snack to take the medication with… I shake my head in wonder. What was the lesson here?
Just when you think you have life all planned it will shake you? A midwife is ten times more valuable then a GP? The Hawaii Department of Health is corrupt and hiding things at the detriment of its people by minimizing case counts, and manipulating what can be consider a diagnosis ?
What a wild ride. I am so grateful to my family, my friends, and my midwife for helping me navigate this. Wednesday I do finally have a phone call doctors appointment, and maybe I’ll get more direction on where to go…. But for now, I trust the scientists at the university, and I choose to believe the treatment protocol they created for known exposure is the safest and best option. And to the few who decided to share their thoughts that medication is dangerous, I shall try a quote from my always sharp mother, “If you don’t have anything positive to say shut your damn mouth”. If I wanted your medical advice this week, I already called you. Otherwise your insights on my child’s safety weren’t requested.
More later, thanks for reading these disconnected thoughts that hopefully give me a chuckle in a few years from now….