Category: Uncategorized

In June of last year, unbeknownst to me, my right kidney began a rapidly accelerated journey to the end of its life. What was supposed to be a simple kidney stone removal (get stent! get anesthesia! blast the stones with a laser like this is a video game from the early 2000s! get stent again! live kidney stone free!), instead heated the inside of my right kidney so significantly, that as of last July, I’ve been living with one functioning kidney. Notably, in October, I realized that my creatinine was double what it normally was, and asked if this was normal 4 months out from surgery. I was told that no, it was not normal (despite this not having been picked up by the provider ordering the lab), and was sent to nephrology where I finally was able to get an appointment two months later. We discussed kidney biopsies and lupus-induced nephritis, ironically regarding my left kidney, which, we would soon find out, was completely fine.

In the interim, I decided I had a right to medical care that I felt addressed my needs (wild, I know), and decided to get a second opinion. Over the last month of my medicine rotation, it felt like every other day was a different, horrible update. What began as a plan to remove the stones from my left kidney quickly turned to a discovery that my right kidney was swollen (ultrasound), and then then that it was atrophied (CT scan), and then that it had basically no function at all (renal perfusion scan). I sneaked away from rounds to talk to my urologist and discuss the possibility of completing my rotations with a nephrostomy tube, or a stent, or both. Each time, I had about two seconds before I had to take a deep breath, try to not have a meltdown, and return to my team to present on my next patient.

In the face of a health crisis while trying to finish school on time, I did what I always do — I rescheduled my exams, kept my composure, overshared in professional settings and made it work. I spent my week-long vacation having a stent (not a nephrostomy tube, thanks to my urologist) placed on my right kidney, and then having a second surgery to remove the stones from my left kidney (which included fun bonuses such as urinating out of my back for a full day). I got home, tried to re-create a routine from an absolute absence of one and held my breath for a repeat renal scan a month later to see if my kidney had managed to recover. I had been at the edge of total kidney failure for more than half a year — one handstand and my left sided stones could have obstructed and laded me in the hospital.

A week ago, I laid within the nuclear medicine scanner waiting to have radioactive dye shot into my veins. This scan is a true test of ones ability to be present. On a screen to my right, I watched my left kidney light up like those annoyingly blue headlights and over the course of an hour I laid perfectly still and watched it drain to my bladder. My right kidney didn’t have so much as a lightning bug’s worth of a flicker. At my appointment, my urologist did not need to “break the news” — my kidney was officially dead, and wasn’t getting off life support. We were going to pull the plug (aka stent) in a week, and let it be.

How do I grieve an organ? As I lay in the scanner coming to terms with living a single kidney existence, I, in an effort to combat dissociation, tried to connect with my physical form. I noted that the left side of my body seemed to have a stronger gravitational pull than the right — I felt more grounded, more settled. All of my complex surgeries and removed or non-functional parts of organs have always been on the right. I wondered if this gravity was less so a physical sensation and moreso an emotional manifestation of a violation of trust. How do I feel knowing that one of my organs is slowly atrophying inside of me? If we are leaving the damaged piece inside of me, how can I be well?

Truthfully, I am primarily relieved. I won’t need to have a complicated experimental surgery to try to save a kidney that barely functioned. I didn’t have to turn my life upside down to make it work. This reaction may be difficult to understand, and while I certainly wasn’t happy that I have lost a kidney through no fault of my own, I moreso was looking forward to a phase of my life where I would no longer have to be so adaptable and flexible. Medical school forces you to constantly adapt to new situations, new people, new evaluation systems. Throwing a health crisis into the mix really stretched my routine-loving brain to new lengths. The people around me, especially those who are able bodied, were seemingly much more upset about my kidney-less existence than I was. I was looking forward to living how I enjoy living, while some of my loved ones jumped to facilitating a kidney transplant.

I’ve decided that I’m going to approach this experience by funneling my frustration into highlighting the absurdity of it all. Despite my immense privilege within the medical system, I was still harmed due to an error. I walk through the hospital where my kidney had its last hours on a daily basis. I was the only one who noticed — what would have happened if I hadn’t understood what my creatinine should have been? Or convinced myself to get a second opinion? Patient self-advocacy is so important, but there are times where it should not be necessary. My intent is to grieve my kidney by celebrating its life, while doing nothing but channeling kindness toward it. I intend to throw a funeral in its honor (with only bean-shaped foods of course) and continue succeeding in keeping myself afloat despite conditions that threaten the possibility of drowning.

What does it feel like to want to be part of the system you question? I listened to a Hidden Brain episode in the shower last night (the optimum time for podcast listening), where they detailed the tragic trajectory of the Ford Pinto. The focus of the episode was on hindsight bias, which, while interesting, didn’t capture the brunt of my attention. Instead, I felt most drawn to the story of their primary interviewee — a former Ford employee who had joined the company with a passion for reform, only to play a role in the continued existence of the Ford Pinto, a dangerous vehicle, on the market.

It looks like the last time I wrote a blog post was the day after I got into the medical school I currently attend. It’s been an interesting 8 or so weeks since I started. In many ways, I dedicated myself to medicine not only because I am passionate about helping and connecting to others and enjoy the problem-solving model of learning — do I sound like I’ve been through multiple med school interviews? — but also because I am passionate about contributing to a movement that focuses whole heartedly on patient well-being and less on the financial bottom line. Like that former Ford employee, I came in with a passion for reform, wanting to improve on the care I received. Over the past couple of months, however, I’ve reckoned with my identity, trying to find the line between being a patient and being a medical student. I’ve spent the last four years using my experiences to enhance the empathy of medicine while attempting to help those like me who have not yet found their voices feel less alone. Do I stop now?

During our patient care class, we discussed possible causes for abdominal pain. I rattled dozens off as though I was reciting the digits of pi, fueled by years of googling possible etiologies behind my own pain. When my professor didn’t know the risk factors for kidney stones, I felt both emotionally and intellectually inspired to list these as well. Do I contribute that I was only aware of them because I have two kidney stones? Do I mention how much they hurt? How I used to keep some oxycodone around so I could get to the emergency room in an Uber when one of them hit, so as to not pay for an ambulance? How much is too much? When we mention Adalimumab, do I say how scared I was when I had to do my first four injections? Is it my responsibility as a patient advocate passionate about reform to volunteer my illness experiences in an attempt to encourage my classmates to think about the lived experiences behind the drug names they’re memorizing or the symptoms we’re discussing? When we breeze over the side effects for prednisone, do I talk about how bad they really are? How it makes you irritable and your face puffy and makes you feel like you could eat your lunch three times over? Where do I draw the line?

I understand that when I begin to actually interact with patients, the times that I choose to share my own experiences lying in a hospital bed will likely be minimized. My experiences will inform my care, I’m sure. I won’t ever tell them to get a good night’s sleep — because who can actually do that in a hospital — but I will refrain from detailing my own illness narrative. The spotlight is on them and their experiences, and the etiology behind my potentially increased empathic capacity from my own story should not often be shared. However, when I was applying to medical school, an advisor told me that perhaps schools would admit me in an attempt to contribute to the empathy of their students toward the patient. Is that my job now? To make up for the lack of lived experiences in our curriculum by sharing my own? Or can I simply recede into my flashcards and my PowerPoint slides, not contributing to the conversation in the way that I feel like I’ve been programmed to.

At some point, I’m sure I’ll be doing Anki from a hospital bed. Is that the time? In not sharing, am I potentially increasing the probability that a surgical resident will have an insensitive comment for an 18 year old in a hospital bed, like one had for me? Am I contributing to an industry that fuels trauma for so many? At what point do I stop being an advocate and I start being a medical student? And what’s the best way to be both?

I got into one of my top choices for medical school last night, and it’s taking everything in me to try to be genuinely happy about it. I’m pleased, yes. But am I happy? Not really. If I had to personify my neurons, it feels like the majority of them are thinking through all the possible worst-case scenarios that can come from this objectively good piece of news. What if it was a prank call? What if I get sick? There’s one, stray neuron that’s thinking logically, trying to convince the rest to ease up. But it’s being drowned out by the rainstorm of horrible ways things could go.

Part of this could probably be chalked up to the rollercoaster of anxiety and guilt I had this weekend. But most of it is probably due to the fact that, for many years, thinking through the worst-case scenarios was the best coping mechanism I had. I remember feeling some sense of hope when I first started getting sick — maybe this appointment will go well. Maybe I’ll be able to stay up past 6 PM. But as soon as I realized that it was easier to be pleased than consistently disappointed, that outlook changed. Between flaring with a chronic illness, having parents with health issues and going to a high school where stress and hard classes were mainstream, it was easier to think that things would go badly than to assume they would go well. Sure, I might not be the image of positivity, but at least all my hope wouldn’t come crashing down on me when things didn’t turn out the way I assumed they would.

This lack of strong, positive emotion is not all bad, though. I’m also having a really hard time being pissed off or angry. I get frustrated, sure, but I never get to the point where I feel like I’m going to explode. I watch shows with depictions of rape or abuse and I feel frustrated by the injustice, but never angry about it. The news makes my stomach turn, but it only makes me sad or disgusted. I never feel like I could punch out a hole in the wall or attack my pillows in fits of rage. My self-psychoanalysis has told me that anger is a direct response to a loss of happiness. If I’m constantly thinking through worst-case scenarios, how can I get angry when things don’t work out? I might be sad, sure, but I’m not surprised enough to ever feel my blood boiling.

I’ve been working on trying to take in some of the happiness around me for the last year. It often seems like when good things happen to me, there are two reactions: either folks are happy for me, or they tell me they assumed things would work out this way. They tell me I should celebrate the good news, and I’ve been trying to convince myself to do so. It’s incredibly difficult for me to take on those perspectives at the moment, but with every positive piece of news, I try to write down all the reasons why I should be able to feel some sort of emotional rush from it. I fake it until I can feel it, I build stack logical arguments against those in favor of the worst-case scenarios I’ve developed, I make lists of the things that make me feel at peace. I psychoanalyze every emotion I have, trying to determine what exactly I’m feeling and whether that feeling is happiness. Usually, all I can hope for is emotional relief.

Eventually, I hope to be able to feel genuine happiness. My pessimism (or realism, depending on how you look at it), doesn’t extend that far. In the meantime, I hope that those around me can be patient with me. Sure, I might not look overjoyed, but I promise I’m trying to be. I might not be quite as loud or excited as I should be. But I’m working on it. For now, though, I’ll keep focusing on the rationale for positive emotion, and eventually steward myself on the path of feeling it.

Although I’ve been doing the Specific Carbohydrate Diet for seven years now, doing it in college is an entirely different experience. No longer can you depend on having a full kitchen, as well as parents who may help you make something if you don’t have time. College is already a huge adjustment, and learning to do SCD while adjusting to college as a whole can prove to be quite a steep learning curve.

The biggest recommendation I have for patients looking to do SCD in college is to begin to see food as sustenance and not as enjoyment. You’ll simply have less variety than you would if you could go to the grocery store and choose whatever you want. You’ll also likely be on some sort of budget, and because SCD food tends to be more expensive than the typical diet of a college student, you may have even fewer options. It’s definitely important to ask your parents for some form of financial assistance if you’re not eating a balanced diet, however. Remember, good food = good health, and without good health, you really can’t do much, so don’t put that in jeopardy just because you’re a little pinched for cash.

So, with that out of the way, a few tips for what doing SCD in college actually looks like:

• Firstly, when I moved in, I made sure I bought the largest mini fridge I was allowed in my room. This can be helpful when it comes to stocking up on fresh fruits and vegetables, as well as making the yogurt. Students applying to university should ask whether the dorms have kitchens, and if a microwave is not available in the kitchen, should consider investing in one themselves.
  In terms of food accommodations, if the patient tells the university that they are on an incredibly strict diet for medical reasons, they may be exempt from needing to obtain a meal plan. This can save students a lot of money that would otherwise be spent on a meal plan that supplies food they can’t eat. Ask about this. Don’t be shy.
• Universities may offer meal plan accommodations, but when I asked for these, they gave me powdered eggs so I wouldn’t trust that. Emphasize how strict the diet is, and they likely won’t make up this excuse. However, some foods in dining halls may be helpful to patients on SCD. Some dining halls have hard-boiled eggs in the salad bar, for example, which students can stock up on as a good source of protein. There is also usually fresh fruit (like bananas or apples), as well as some dining halls have “churn your own peanut butter” which, when eaten with a banana, can make a great snack on the go.
  If the dorm has a kitchen, I have found that frozen veggies that I can steam in the microwave are a great staple. Making big batches of chicken breast, hard boiled eggs, and lentils for the week is also very helpful. If there’s a grocery store close enough, salad ingredients can help for a quick meal, especially when supplemented with nuts.
• My diet generally consists of:
  • Breakfast: SCD Legal Cashew Bread (my parents ship this to me, keeps well with two-day shipping + freezing upon arrival) with creamed honey and an apple. You could also do peanut butter with a banana and a hardboiled egg, if your parents can’t ship you things.
  • Lunch: A salad with trail mix, or chicken breast with steamed veggies seasoned with salt, pepper, and olive oil
  • Dinner: SCD Yogurt (24 hr, 2%) sweetened with honey, and eaten with a banana, strawberries and blueberries. I’ve also made this into a smoothie before with my smoothie making stick (https://www.amazon.com/BELLA-Immersion-Blender-Attachment-14460/dp/B018ELIYA4/ref=sr_1_3?ie=UTF8&qid=1497353053&sr=8-3&keywords=smoothie+stick) , and substituted the strawberries and the blueberries for peanut butter.
  • Snacks: Hardboiled eggs with salt, SCD legal baked goods either shipped with the bread or from SCDBakery, banana with Justin’s Nut Butter packets (https://www.amazon.com/Justins-Nut-Butter-Natural-11-5-Ounce/dp/B002ATEZOG), Larabars, Rx Bars, or self-made trail mix.
• To save money on nuts, order them off of amazon. You’ll likely be consuming lots of them, so its worth it to buy your favorite nuts in bulk and making your own trail mix.
• In terms of making the yogurt in my dorm room, I heat the milk up in the microwave and watch it until I see it reach the temperature where it’s nearly boiling. I then leave it to cool covered in cling film while I study, until it reaches 110F, at which point I add my Yogurtmet starter, blend it with my smoothie maker stick, and put it in the DASH Greek Yogurt Maker (listed above) for 24 hours. When that period has elapsed, I put it in my fridge, cool it completely, and then strain it using the strainer that comes with the yogurt maker. I have to do this fairly often given that the yogurt maker does not make a ton of yogurt, but I can complete other tasks while I do it.