Caught in the Cogs

The Mayo Clinic in Rochester, MN, is a well-oiled machine, managing to fit a handful of appointments into a single week, where it would have taken several months and many phone calls to coordinate something similar with doctors' offices in the area (plus, they know the weird stuff when your local physician has reached their limit).  When I was going to Mayos it seemed every other month, there was almost always bloodwork before the first couple of appointments.  By default, this included a fasting blood test, which meant I could only have specific foods the night before AND I could not have anything to eat until the blood draw itself.  Sometimes, this was particularly difficult when the scheduled time for blood draw wasn't until 1430.  

With this particular test, I found myself getting chewed in the cogs of that well-oiled machine.  I still got through the machine, mind you, just a bit more crumpled than I needed to be.  At certain points of my Crohn's journey, I could not tolerate not eating when I was hungry--skipping one meal meant literally three days of catching up.  So, while it seemed like something simple and routine, I was emphatically not okay doing the fasting part of the bloodwork.  I suffered in silence twice, and then (with familial prompting) thought to call and ask if I that part was strictly necessary.  Turns out, it was a pretty routine piece--something that they have as part of their standing orders.  BUT given that I was the age I was and my other medical history, it, in fact, was not necessary.  They took that particular test out of the blood draw and I was clear to eat what I needed to the day of.  

All it took was one question.  All it took was knowing to ask that one question.  The kind of pain and discomfort that this standard order caused was preventable with a single, polite inquiry via phone call.  

There was another time, when I was arranging my reconnection surgery of my ileostomy (which a few years later became a permanent colostomy), and I had foolishly made an assumption:  I had assumed that I wasn't supposed to be on my medication yet, based on previous surgeries, and I had also assumed that my local doctors and Mayos doctors might talk to one another.  It made for one furious ride home, while I made multiple calls to my GI doc after Mayos delayed the surgery for about a month so I could resume the medication.  

The material point:  I have been doing this for years, and there are still places where I get caught in the cogs of the machine of healthcare.  I've learned so much, including what questions to ask and how to get answers from both the insurance company and a doctor's office that is slow to return calls, but I've come by that information through a lot of work and experience.  

Something happened in clinical lately.  I watched a patient that had very similar behaviors to my older sibling, that they were possibly on the autistic spectrum.  It worried me that this patient might get caught in the cogs.  I could see a potential breakdown in communication happening--there were different steps that had to be taken to help the patient fully understand the circumstances.  There were some significant diagnoses and prognoses happening to that patient, and I was very much focused on recognizing their humanity while honoring their neurodiversity.  With this person, I made the code switch to speak to them in a way that we could more effectively communicate, specifically changing how I asked questions to get the information I wanted in a way that minimized confusion, stripping out most of my more colloquial turns of phrase.  It made perfect sense to me what was happening, but I couldn't figure out how to help my compatriots make that code switch in a concise and/or subtle way.  

I do not want to imply that this individual received any less care--they were absolutely treated and informed--rather, I'm highlighting the emotional exacerbations to not feeling heard that could be preemptively avoided.  I wanted to tell the other caregivers with my eyes that the client wasn't being obtuse on purpose; I wanted to tell the others how to alter their questions to get the information they actually wanted and not to imply the real question; I wanted to empower the next caregiver for this patient how to do the same.  The client's needs were being met, but there was space to communicate better.

There are places where neurotypicals get caught in the cogs, too.  There are questions that we don't know to ask; there are changes we don't know are an option; there are inconveniences that we don't recognize don't have to borne.  

How do we know these places?  By asking questions, even the dumb ones.  And it's important to teach others to ask questions, too.  This is the best way to extricate yourself from the machine.  Sometimes the answer will be "no," but that doesn't mean the time it took to ask the question was wasted--occasionally, it might be a "yes."  As a blossoming medical professional, I want you to be able to trust us, but I also want patients to understand and to be able to identify pain points that I haven't the right perspective to understand.  There are things that are a simple inquiry away from resolution; there are things that are the way they are; I cannot guess which yours might be until I hear it.  

So the short version?  Again, ask questions.  I don't mean go full-Karen.  You as a patient and/or insurance recipient have a right to understand why decisions are made the way they are made, why a particular recommendation is suggested.  If you can approach these questions with grace and genuine curiosity, you have taken great steps toward self-advocacy.  

Peterson Family Update #8920-gamma

No, there is absolutely no rhyme or reason to how I label these kinds of updates, but there is a method into how I time them for myself.  Basically, I say to myself "holy crow, so much has happened lately that I don't know where to begin!"  Maybe there are a lot of small thoughts that are important but not significant enough to justify an entire blog to themselves or maybe there isn't enough time to dig into all of those ideas in a timely way.  Or sometimes it's because I've been waiting to talk about something until someone asks me the right question, and no one seems to know to ask the right question--this is a confounding habit of mine and not blame that I setting any particular direction.  As such, I have a myriad of little thoughts that require expression and it is, once again, time to deploy the bulleted list.  

• I go once a year for a dermatologist check-up.  With my medications and conditions and being as pale as I am, I have some predilection toward skin cancer, so we keep an eye on it.  Last week, we took a biopsy on a basal cell carcinoma.  Waiting on the results for that.  I'm not worried, per se, as the doc said it seemed pretty superficial, but I am a bit jostled, as I had my own suspicions on what it was (based on common Crohn's crossovers) and hadn't considered that.  It was a reminder to check my blind spots and assume nothing.  I'll be reaching out for biopsy results this week.
• Luna was spayed a couple of weeks ago, which meant that she needed some additional care that she was not always happy about.  There was the resulting weight in the household as we tried to rein her in from jumping up to her favorite spot on the couch or going down the stairs too quickly or from playing in general, lest we strain her stitches.  I'm glad to say that we are over that hump, and she's back to her normal self (and my current writing companion as I sit).  Andy set up social accounts for her, if you'd like to get some extra doses of Luna between blog posts.  

• I definitely underestimated how much relief I was going to feel after getting the vaccine.  I can make plans again as I feel my world start to open back up.  That doesn't mean that I stop all of the precautions, but I can at least remember how to stretch again.
• I have two grandparents in assisted living facilities and another that is receiving home health care.  At least one of these is DNR, but there is a real possibility that the other two have some advance directives as well.  As COVID has rolled through some of those facilities, I've been wondering whom I might be saying goodbye to first in the back of my mind.  
• It occurred to me recently that my program will be over in six months.  Six months and then I will be done with nursing school.  Holy crow.  
• Speaking of which, I got a hot tip the other day about a nurse residency program that was hiring (basically, a transition from school to real-life practice), quickly updated my resume, wrote a fresh cover letter, and had an interview the next week with another two days after that.  I'll make a broader announcement later, but, yes, it feels brilliant to have post-school plans already lining up.  :)
• Part of my clinicals involve going into schools, to consider the health needs of individual students and also the school as a community, as a system.  I happen to be at a school district that uses Skyward, so it's surreal to me in ways that are a bit different in how it's surreal to my peers.  This feels familiar to me, that I'm used to being a foreign but friendly entity in a school building.  It's...nice.  I did like that as part of my job, to see people on their home turf and in their own context, whether it was a secretary or a lunch lady.  Simultaneously, I have the chance to see what COVID protocols in a couple schools actually look like, instead of hearing about them by proxy.  Something I neglected to mention in my vaccine post last week is that it is not yet available to persons younger than eighteen, meaning that there are parts of this that will continue to be real for schools and their populations for longer than the rest.
• The weather has slowed progress on our major house projects.  I look forward to being on the other side of both of these.  
• I am not surprised by the events happening in our capital--specifically, the second acquittal of Trump--but I am increasingly disappointed.  The amount of double-think and double standards is truly appalling.  
• Black lives still matter and will always matter.
• This term moves and feels different than previous terms--Andy and I are still trying to find a rhythm for how we connect as a couple and still meet our individual needs.  It's a continual process of communication, and that continued insistence toward transparency, honesty, and empathy find ways to make it work and keep that connection.
• I feel no small amount of guilt for not keeping as well in contact with individuals during the pandemic, during school.  There's blame to share, certainly, so it comes in waves.  I'm starting to think about what post-school is going to be like, how my energy may be spread differently and how I want to utilize that.  
• I've been hosting Bob Ross Paint-a-Longs every other week or so, where we gather on Zoom with whatever art materials we have--even if it's just the paint program on one's computer--and watching an episode together, sharing our "masterpieces" afterwards.  It's been a joy just to explore and play, with persons of all skill levels.  A beautiful bright spot in the dark.  

And that's the jist of things as they are.  We've a snow day at school, and I'm using some of the time to relax a bit before another clinical shift tomorrow.

Some Fact-cines about Vaccines

I've been thinking recently on a few levels that I am intimidated about accepting the public responsibility of becoming a nurse.  I have already been a resource for people about how to navigate the hospital as a patient or sort things out with insurance or some empathy for living with a chronic condition, but once I complete the program and claim the title behind it, well, there's a public obligation and expectation that comes with it.  

So let's claim part of it.  We're talking about vaccines today.

***SCIENCE BACKGROUND TIME***

Let's talk about the immune system.  There are a lot of parts that work together in the process, lots of working cogs.  For my purposes here, let's pretend that the body is an indoor shopping mall.  

There are all kinds of different parts of the mall that work independently but they have shared connected spaces and shared connected concerns--there's a crew that maintains the facility, shared walls and entrances, shared water and electrical connections, and a shared security team.  

The roof protects the mall; the walls protect the mall; keeping the entrances maintained and repairing any leaks protects the mall.  All of these pieces working allow the stores to do their own tasks.  

There's a passive part of the immune system, a prevention element--keeping the skin intact keeps a lot of viruses, bacteria, parasite, or whatever from even starting.  Hair, eyelashes, saliva are working on the same kind of physical level.  Stomach acid, enzymes, and even the temperature of the body can work on more of a chemical level--so sanitizer stations around the mall, window cleaners, cart clean-off supplies, etc..  And then when something is there that is outside of the normal, firmly in the something is "off" territory, the store will call mall security.  If something is truly awry, they'll call the police proper to escalate it from there.  

The mall security are kind of like the primary or innate immune response--this includes some more generic responses in terms of the body.  The alarm is raised, but the attack isn't targeted yet.  So, maybe it's more like pulling the fire alarm, in a sense.  This manifests in the body as a fever--raising the temperature in the body to hopefully use up too much of foreign bacterium's energy or make it too hot to survive--or even something like vomiting or a runny nose or coughing to get the perceived threat outside of the body, if possible.  Certain kinds of cells are the plain-clothes cops, walking around trying to quietly remove threats, too.  Again, at this point, it's not a targeted response, just general procedures.

Then, information moves further up the chain of command--let's say mall security found some bags of unknown substances in an abandoned backpack.  We're going to call in some specific experts at that point.  The older mall guard on staff remembers the obscure protocols from here, knows what is supposed to be done next.  Here's we're getting into the secondary or adaptive immune response.  This takes a little longer than the innate/primary response.  The innate/primary is a reaction, a general response; the secondary/adaptive is looking at specific information from the scenario and responding to it appropriately based on that information.  Then, if things are seriously out of hand, we can look at calling in outside police, which I'm saying are your healthcare provider and/or medications in the analogy. 

So how's this apply with vaccines?  

Vaccines are an outside company that comes in and teaches your mall security how to respond to situations.  They provide a simulation to help them react appropriate in a real-life case scenario.  In the case of COVID-19, the body is introduced to what the protein looks like, which the body rightly recognizes as "off" and then it triggers the primary/innate response immediately (fever, chills, achy, blah) and starts taking in data for the secondary/adaptive response.  Then, if/when it runs into that same "off" again, it can pull up that action protocol sheet and move through the steps much more efficiently.  Then a booster shot or a second shot in a series is a reteaching to ensure that the information is solidly remembered in the case that it's needed, updating the security protocol sheets and the like.  

That's it.  That's the entire process.  And it works.  

Or in meme form:

I have a few textbooks in my room that can explain it in more depth, if/when anyone wants to dig into it further.  

SO.  Let's get into some of the COVID specific FAQs that I've run into, at least.  Some of these conversations have been about specific concerns, some have repeated...interesting theories, others have been concerned about their particular situation or heard conflicting information.  My nursing program is having us students participate in administering these as part of upcoming vaccine clinics, meaning that we had to review and test on specific, current CDC literature on these vaccines and how to safely administer and check these vaccines.  These guides are accessible to anyone willing to look for them--there were no credentials I had to enter in to go through these modules, if anyone would like to look through them.  I've linked some sources as made sense and summarized ideas in places that didn't.  

Can I still spread the virus if I get the vaccine?  

Short answer is two weeks after your second dose, you're unlikely to be a virus firehose, but it also doesn't magically turn you into a Clorox wipe--this virus spreads through droplets, meaning that if you still touch something and touch something else, etc., that you're able to spread things.  Unlikely is not zero but statistically is still MUCH better.  Wearing a mask is still needed, particularly as there is still research on what vaccines might be effective against new strands.  There are also multiple strains of the virus and evidence is still coming in whether the vaccines are equally strong against all strains.  The Moderna one specifically has been showing promising signs toward broader effectiveness (presumably, Pfizer is still being tested).  Setting a good example for the good of the community is also meritorious--these precautions (sanitizing surfaces, wearing masks, staying home, etc.) is also brilliant at preventing the spread of other diseases. 

What's the difference between the Pfizer and the Moderna versions?

I didn't know much about this one, to be honest, until I went through the CDC vaccine training.  Here's the short version of what I gleaned reading their different sheets.

• Moderna:  28 days between doses, not mixed with any diluent, 0.5ml shot, 10 doses per vial, cannot be packed in dry ice
• Pfizer:  21 days between doses, mixed prior to administration, 0.3ml shot, can be packed in dry ice
• Both:  no preservatives, antibiotics, adjuncts, thimerosal, etc.; must be kept cold until ready to administer; efficacy above 90% for both (which is better than some other vaccines, actually); the most common side effects for both and in the same order is as follows:  pain at the injection site, fatigue, headache, and muscle pain

Can you mix the vaccines?

According to the CDC, not at this time.  If your first was Moderna, stick with Moderna.  If your first was Pfizer, stick with Pfizer.  Just this week there was news about testing out whether they could be interchangeable, but we need to wait for the data to come in.  They were tested individually and verified individually.  Wherever you get your first dose should help coordinate where and when you get the second of the proper kind.  

Is it safe?  Was it made too fast?

Yes, it is safe.  What normally slows a vaccine's development is trying to get funding.  There were some steps made to help expedite the process, recognized under the emergency authorized use, but it has still tested safely.  There are also two systems to help track vaccine side effects as they go, namely a voluntary smartphone-based tool called V-Safe and the official Vaccine Adverse Event Reporting System (VAERS).  

Screenshot from CDC information, used without permission

What about reactions?

So after you receive your vaccine, the site will likely have you linger for fifteen minutes afterwards, to ensure that you do not have a serious reaction.  A small group of persons might have an allergic response.  And by small, I mean less likely than being struck by lightning, by some accounts, and here are some additional specifics on COVID-19 in particular--the main point of that article is that the benefits outweigh the risks.  Also, there are no preservatives used in either the Moderna or Pfizer, which have historically been the source of the bulk of these allergic reactions; this is why it is so important that the vaccines are refrigerated to specific temperatures.  A larger small group might have vasovagal syncope (i.e. pass out).  However, there are still side effects to consider post vaccination, the most common of which are the following:  pain at the injection site (sore shoulder), fatigue, headache, aches/pain/chills, and fever.  These usually clear up within a day or two and are evidence that your immune system response is indeed being activated.  Anecdotally, the second dose's side effects tend to hit people harder than the first, so if you can plan for a lighter day after your second dose, it may not be a bad idea.  In preparation for my second dose, I picked up some of my sick-day staples, like crackers, soup, and Sprite.  Here's another perspective on those pieces.  In summary, the risk is miniscule and the temporary pain tolerable compared to the benefits.  

Do I really need both?

Yes.  Here's why--so, yes, the body has been exposed to it before, but a series is designed to keep the information fresh, to have a consistent, trained response, to have a specific level of antibody response. Think about your work protocols--there are some things you talk about once in training for a job but keep the protocol sheets accessible; there are other situations that the group will have to renew every other year or so.  Some information simply needs emphasizing; there are some cases where your immune system needs additional, specific training, too, to ensure it's reacting to the right information.   The two doses were found to be needed to achieve an adequate response to either prevent entirely or significantly mitigate the symptoms of contracting COVID-19.  It's not arbitrary--it's the right procedure to get the most people the best results with the least amount of inconvenience.  If it could be designed safely into one shot (knowing our collective attention spans), I assure you it would have been done that way.  

Does the vaccine cause infertility?

I have been searching for some kind of academic article somewhere with my school resources and have come up dry--there is no scientific evidence to this rumor that I can find anywhere, which means it's currently an unsubstantiated rumor.  You know what definitely causes infertility though?  Being dead.  Or killing your partner.  And for those willing to risk it, there have been some documented studies pertaining to having COVID-19 and lower sperm count and some additional that agree it might be there but not permanent--still, the vaccine is different than the disease; knowing a fire drill isn't the same as being in a building that's currently burning.  I have greatly enjoyed the resource Mama Doctor Jones on YouTube as a resource on gynecology and obstetrics and she posted a good video that explored these pieces.  

...But secret microchips?

*Sigh*  To be frank, this is just stupid.  If it were true, the needle would be MUCH bigger, for one.  And each vial holds several doses--specifically, the Moderna vial holds ten doses and the Pfizer one holds six.  The nurse is usually just kind enough to draw this into a single syringe out of your eyesight when possible to decrease anxiety.  I'm sure you can ask to see it if you don't believe me.  So how would someone magically ensure that each dose has a chip?  Do these persons think the vial has them floating around in the clear liquid and we have to spend four minutes to fish them out?  Otherwise one person would get four and another would get none?  Also, if Bill Gates was so good at mind-control, we'd all be using Zunes and Windows phones.  There is no logic in this theory.  And many other bodies have pointed out that our smartphones track our movement most anywhere we go anyway by pinging off of other wireless points--that's how your maps app can give you directions.  

--------

So, these are explanations designed to be approachable to the layperson.  I enjoy educating people who are interested in learning.  There are going to be nuances and "Well, technically..." pieces that fall into place as we dig into the subject, particularly when it comes to my chosen analogy.  Genuine discussion is encouraged; bad faith arguments are not.  That said, if you've a question, I will see what I can do about answering it as my schedule allows, excited to see what I can learn in the process to.  Responses that are browbeating or otherwise without substantial reasoning will be removed.  

Melvin & Me, Part 34: Melvin at the Hospital

So, Melvin isn't a stranger to the hospital, certainly.  But now, Melvin has had a chance to be on the other side of the hospital experience.  And subsequently, there are a few different modifications and things that I have to keep in mind.  

***SCIENCE BACKGROUND TIME***

The autonomic nervous system is in charge of managing homeostasis in the body, ensuring that your body stays at that right temperature, that you are breathing enough to keep your body oxygenated, that your blood pH stays at the right level (related to breathing, as it happens), that your heart rate speeds up when you need some additional blood flow, that you are conserving water when reserves are low, and many other functions.  As part of this process, though, we have the sympathetic and parasympathetic nervous response.  The sympathetic response we tend to think of in emergencies, the "fight-or-flight" part of things, which involves all of the associated symptoms:  faster heart rate, bronchodilation, blood pressure goes up, eyes dilate, etc.  Blood is being shunted away from the digestive system as part of this, slowing gut motility (i.e. the digestive system chills out for a moment, since you might need to fight for your life).  Long story short--when anxiety goes up, digestive system slows down (not hunger, necessarily, but the actual digestion part).

SO.  New nurse.  On the floor.  Trying to figure out what the hell is going on.  Even though I'm not actively terrified, there is definitely an edge where I am watching for places that I can be helpful and trying to absorb all possible pieces of wisdom and observation that I can manage.  No small amount of stimulation there.  Melvin has been markedly quiet during some parts of my clinical days, just for the slow-burn of anxiety in my brain.  

Actually, I'm not sure if it's the sympathetic nervous system is the real working part in this--I'm also on my feet and moving more than I had been in a while, participating in a twelve hour shift where I'm on my feet for the bulk of it.  My energy needs are different than when I'm in my theory days and sitting in class for six hours.  

Either way, the results seem to be following a bit of a pattern.  I try to eat a decent-ish breakfast before getting into the day--around forty to sixty minutes later, Melvin burbles some air or stool.  So normally I get to the hospital and Melvin blorps.  Then about fifteen to twenty minutes later, he blorps again.  I tend to empty around both of these times, trying to make sure that Melvin is as empty as possible before report and/or immediately after report--either way, before morning meds start.  Then, I don't put much into my system for a while, finding a break somewhere to suck down half a liter of water and then eventually lunch.  All-in-all, there might be a little bit of air from Melvin, but I have a moment or three to work and forget my stoma for a bit of time, to find myself engaged in other thinking.  And then Melvin burbles again, and as soon as I have a moment to pause, I'll take a moment to pop into the bathroom, let out the air, and then go back to the floor, as secretive as I want to be about my ostomy.  

That's the physical--what about the emotional/spiritual?  

Honestly, pretty good.  On the one hand, it's frustrating to have to pause to take care of the physical, to pop off to the bathroom to let out more air.  However, it does give me A) a reason to pause and take a breath to run a quick self-assessment or reflection and B) ensure that I actually take a bathroom break, which is good for overall urinary health compared to holding it for six hours.  I can make excuses to not go pee, but when it comes to Melvin, I have a different mindset, the "yep, I'd better go address that."  I can be annoyed, but it's also a place where I have recognize I have to conscientiously invoke some self-care.  And then taking that recalibration step to pause and think has had a number of good benefits, too.  It's another opportunity to make an expression of radical self-acceptance.  

Spiritually, there's been a boon, too.  So far, I have discussed my ostomy with at least seven patients, using it as a point of empathy in particular to those that have their own stomas.  It's been an opportunity to educate for those that are medically curious once or twice.  I'm cognizant that we don't stay focused on it for too long--I don't want to meet my needs at the expense of the patient's needs--but that doesn't mean that there is no return on empathy.  More so, though, I feel that I can use the trauma and experiences that I have had to someone's benefit.  One instance was an individual that had a bag and asked if I was allowed to eat normal food--they had not eaten anything in quite some time:  I was able to provide hope for a life resembling normal.  

So, in short, Melvin and I are both relatively at home in the hospital in some interesting ways.

***Bonus Round***

I DID have a patient one day, though, that made an allusion to "well it could be worse; I could be one of those people that has a bag." 

I was grateful that the laugh I was holding back was hidden by my mask--I wasn't upset in this case, and it would have embarrassed this person terribly to say anything, so it was my "*snort,* yeah, I'd hate to be one of those people" secret joke in my mind.  Whenever we crack those kinds of jokes, we can seldom be certain of someone's complete history, which is an interesting thing to ponder.