Posts Tagged ‘low-potassium diet

04
Dec
16

After several days of really bad insomnia leaving me really strung out feeling yesterday, I finally got what felt like actual sleep last night. THANK GOD.

I drove my car today! I ran a bunch of errands and prepared all my own meals!

My ankles are fucking wrecked.

I was on my feet a ton today and they are massive. Elevated for the rest of the night, and tomorrow. I cleaned out the fridge, tidied up a bit around the house, did some Christmas shopping, picked up a few items for myself to get through these extra husky weeks I’m having, and spent a lot of time analyzing food labels and picking up some low-sodium/protein snack options for work.

There was something very weird about trying on clothes that I hope don’t really fit in a couple months. I realize this a normal thing tons of people do, but I’ve never targeted a different weight before, so it’s a new experience for me. It’s also weird to try on clothes when your sausage legs are full of water and will, to a degree, take on the shape of whatever vessel they’re in. Seriously, they’re so squishy and weird. It’s super disturbing. But I needed one more pair of pants I can wear to work–mission accomplished. I hope that’s the closest to a dressing room breakdown I ever get.

I’ve made some observations.

  1. There is a lot available for people looking to cut out sodium, but you have to look pretty intensely for it and always pay more. It’s roughly 3x more to get a can of tuna without salt added, for example. I hate our food system. My sodium limit is not much less than the suggested daily for an average person. People are killing themselves with all this extra salt they’re not even aware of.
  2. I pretty much don’t need to worry about my potassium limit so long as I’m not eating bananas, avocados, or tomatoes. My protein and salt limits take care of the rest anyway. All the delicious high-potassium preparations of potatoes are too salty for me to enjoy. This is a relief because potassium is hardly ever listed, making it really hard to track on the fly. So long as I stay away from large quantities of danger items and pay attention to salt and protein, my kidney diet will be fine.
  3. Items that are gluten-free, unless marked as ‘good source of protein’, are generally a nice shortcut, as long as they don’t have a ton of potassium or salt. A lot of the stuff that gets removed to make something gluten-free also makes it lower in protein, unless they’re trying to compensate for that in particular.
  4. I was definitely eating a ton of protein as a vegetarian. Anyone who ever gave me crap for the last ten years about getting enough protein on my diet can retroactively STFU and probably leave the other vegetarians they know alone, too.
  5. Calcium is interesting. I’m on a lot of calcium supplements because the steroids are bad for my bones. I think I’m starting to notice when I go too long between supplements throughout the day. I’m digging into it. Calcium absorption is apparently very complicated.

M&D are in LA for the next week and a half, so J and I are on our own. I plan to do the same wfh/office split this week, to manage my water-retention gravity-hates-me problems. Despite being super active today, I still have a lot of energy, which is great! My body is just wrecked — my ankles/feet are killing me from all the standing/walking. I made the HUGE mistake of picking up Rosie yesterday morning and now my arms are wrecked, haha. Gonna take a while to build my strength back up I guess, whoops. Here’s hoping I get more sleep tonight.

 

 

 

02
Dec
16

I had a very busy day yesterday!

I’m writing to you from bed because insomnia — it is midnight Friday. These steroids have made me even more efficient on even less. My body is ridiculous. I don’t know how it does this. What sort of insane beast will I be when I’m closer to “normal” health?

ANYWAY

I went to work again yesterday! It was even more awesome than Tuesday. I’m definitely getting my groove back. My ankles are swoll as fuck — I did a worse job of sitting down and elevating my legs and I’m paying for it now, but otherwise I feel great! It’s so much easier for me to focus without those headaches I was having and I’m less fatigued. The strain this extra weight is putting on my body is a new challenge, but I’m not exhausted and unfocused like I was in the weeks leading up to my crisis. Mentally, I feel like I’m firing on all cylinders again. Being back at work has been really good for my self-esteem. I feel the most like myself when I’m kicking ass at work.

Before I went to work I had my follow-up appointment with Josh. I was a few minutes late which really stressed me out, but it ended up being ok (he ended up being later–fucking doctors, man). There’s not much to report. Treatmentwise everything is still really wait-and-see. He said my urine had “less activity” which I guess means less wayward protein and other stuff that shouldn’t be in there, so that’s a good sign.

The awesome party I imagine in my urine specimen.

I got blood drawn today, he’s supposed to call me tomorrow with the numbers, so hopefully we’ll get good news there. My BP has been stable since the hospital. It’s still a little high, I’m usually around 140/90, so we’re gonna bump up one of my BP meds and see if that brings it a little lower. My energy has been really good and I’m mostly tolerating my meds pretty good. I told him I’ve been feeling sensitive to the iron the last couple days but all he did was give me his sad “sorry bout it” face, so I guess that’s just a thing I have to deal with. UGH. My body needs iron but doesn’t want it, I hate you, anemia! I’m feeling a little better now though, so that’s good at least.

I reminded him I’ve gained 20-25 lbs since being admitted to the hospital and it’s very uncomfortable. I’m definitely getting double whammied with water weight from the steroids plus edema from my reduced kidney function. Hopefully it goes down as we taper the steroids and I hopefully regain some kidney function. In the meantime, I’m allowed to increase the diuretic I’m on until I see results and explore other means of dealing with it, such as acupuncture if I want to. I definitely need to find some solutions. My ankles, knees, and back are having a hard time supporting this extra weight now that I insist on not just laying in a hospital bed all day (and even that was still hurting my back). Not to mention I only have one old pair of baggy jeans that fits peak sausage legs and I’m not super interested in buying a ton of clothes that I’ll hopefully only need for a number of weeks. Same goes for shoes. But at least shoes will still fit after. Might use as an excuse for new shoes, hehe. Also, sweaters.

The one bummer thing is that Josh thinks it’s pertinent for me to start actively finding a living kidney donor match. Because my last recorded GFR was under 20, I qualify for the transplant list, so I should prep my transplant. Hopefully this changes with today’s blood test, but even so I’ll still be pretty close to the danger zone and better to be prepared. Outlook is much better for me if I’m ready to go with a living donor and can avoid dialysis if things go south. Since my body has been pretty fucking unpredictable with this whole mess, having Plan B ready is definitely the smart thing. Once I have my consultation with the living donor program folks I’ll send out some information on how you can get tested, if you’re so inclined.

While I was having Josh Time, my parents were downstairs stalking the chemo scheduler. I don’t know how many messages my mom ended up leaving this guy yesterday on my behalf, but he didn’t return any of em. Luckily, great success in person! Mom got my next chemo treatment pushed out about a week and a half, so I get to do a bunch of things I would like to do before my next treatment potentially takes me out (mostly some important work things, hopefully our holiday party, Elora’s birthday, and my parents will be back in town). She was also able to shift ALL my other appointments for the next six months from Tuesdays to Wednesdays which is a thousand times more convenient for my existing work schedule. Huzzah! Thanks Mom & Dad!

After I put in another full day of work with a little too much standing, Brittany came over for dinner! I went to the doctor, and to work, and was social! Like a  full human being! And the only downside is my wrecked ankles. Not too shabby.

I also came a little close to having a meltdown over the amount of protein in a tortilla jeopardizing my dinner plans. But it ended up being ok because I was so skimpy with my protein at breakfast this morning (which I also paid for — I was fucking STARVING before I ate an egg at lunch today). Food is important.

We’ve been making great strides in the food department. Mom downloaded a renal diet cookbook on her iPad with a lot of super useful information and recipes to try. She made us mac and cheese out of it the other night that was pretty good and can definitely be made better with more adventurous seasonings. I had the leftovers for lunch today.

I’ve got my system more or less figured out and it’ll get better over time. Protein and salt are definitely my problem areas. Protein adds up fast, especially now that I’ve started eating some meat again and fucking secret salt is going to make it really difficult for me to eat out. I spent a lot of time the other day googling the eateries around my office to find good options and SHIT IS BLEAK. Stuff I can find nutritional information for is mostly out of the question unless it’s the ONLY thing I eat that day (duh, no can do, will starve and die), and most places don’t post any nutritional information. I can figure out protein and potassium on my own from ingredient lists for the most part, but if those fools salt things I’m fucked, so I can’t really risk it. It’s a toughy. There’s going to be a lot of advanced meal prep and packed lunches in my future. Lots of pasta and fruit and hard boiled eggs. And popcorn. I am going to learn to love popcorn (with NO SALT!).

UPDATE: I’ve waited all day long to post this for Josh to call me with my numbers from yesterday’s bloodwork.

My creatinine and GFR are the same as when I left the hospital :-/ SIGH

But, my hemoglobin is up to 9.5 so I’m out of the blood transfusion zone, so that’s good at least. GLAD SOMETHING WORKS.

I put in another full day at the office today. I am very tired. I’d like a full night’s sleep tonight. I have big plans to couch potato tomorrow. Mmm potatoes…

22
Nov
16

Home but not better.

I AM HOME FROM THE HOSPITAL!

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Back home with my Top Nurse and not wearing hospital clothes!

It’s a little misleading. In a lot of ways, I’m in worse shape now than I was when I got to the hospital — my immune system is shot and I’m even more anemic. There’s an open wound in my neck. I’m still retaining a lot of water and feel and look like a sausage.

I’m currently adjusting to the reality that I am living with stage four kidney disease, and will be for the foreseeable future until things either get better or worse.

I have to limit my potassium.

I have to limit my protein.

I have to limit my sodium.

I have to monitor my anemia and continue taking iron supplements and hormone injections.

I have to monitor my high blood pressure and continue taking medication.

I have to be slowly weened off of steroids for the next six months.

I have to take a bunch of medications to counter the negative effects of steroids.

I’m probably going to have to get more chemo, which will make me more anemic again and decimate my immune system, again. Plus risk of infertility, plus risk of hair loss.

I have to take extra care to not contract any infections that could set off my immune system and throw my kidneys into crisis.

I have to keep in tip top health so that I am a good donor recipient.

I have been encouraged to find a living donor match so that I have a plan in place should I find myself desperately needing a new kidney so I can hopefully avoid dialysis.

There’s a still a chance I will be able repair my kidneys and regain more kidney function. This will take a very long time.

I am making plans.

Yesterday was a really weird day. I started the morning with my favorite nurse telling me she had completed my discharge paperwork should the doctors decide to let me out. I resisted hope. My numbers were stable — hemoglobin up to 6! Kidney numbers still the same. My last scheduled plasma treatment started relatively on time and went fine, except that the steroids made my entire body hum for two hours which was super unpleasant. Josh and my internist delivered the news that we wouldn’t be doing anymore plasma treatments and I was allowed to go home if I wanted to. They didn’t actually say, “Well, there’s nothing else we can do for you,” but that’s what I heard. Well, let’s get me the fuck out of here then.

We spoke at length in fairly vague terms about what my next six months – forever look like. I got randomized a new attending that had to meet me for the first time then coordinate all my discharge stuff–this took ALL. FUCKING. DAY. A representative from the living donor transplant program paid me a visit and gave me a pamphlet. A dietician brought me three lists of foods I can’t eat. Then I spent several hours waiting for someone qualified to remove the central line from my neck so I could go home. This was agony — not the removal, just the wait. Phil, my nurse (poor Phil, who only gets me on my worst days–Iron Treatment #1 and then yesterday), cold called the entire hospital all afternoon I think until they finally sent someone up around 6:30. It took less than 5 minutes to pull this thing out of neck and then Phil had to hold a compress on it for a full half hour so I wouldn’t bleed out (success!). Phil also ran down to Walgreens and picked up all my meds for me. Then I had to get a flu vaccine and a pneumonia vaccine (these both still strike me as something very risky to do). THEN. THEN I had to wait for the goddamn pharmacy to send up my hormone injection. The universe decided it was a great time for my period to start. We didn’t leave the hospital until 8:30.

Mom and Jess spent the better part of their day hanging out in my hospital room waiting with me while I basically sat catatonic on my bed trying to process everything that is happening to me. I was not fun to be around. I’m still not very fun to be around yet.

But! I’m working on it. I have a lot to figure out and I love figuring things out. I was up all night trying to figure three things out:

  1. How do I get my kidneys to work again?
    1. I’m going to build some tools to hack my diet and monitor all the things. Everything available in the app store is garbage I think, so I’m going to build my own system in Google Sheets.
    2. I’m going to consult some more “alternative” medicine. I fully submitted myself to western medical establishment for two months and have found it wanting.
    3. I’m otherwise perfectly healthy, so I’m going to keep doing what I’ve been doing for the most part, with a few lifestyle adjustments.
  2. How do I get back to work?
    1. This has less to do with work and more to do with me getting back to something that I love.
    2. Actual work is the easy part. I’m very good at my job and my work is not strenuous. Work needs my brain and my brain is still great.
    3. My immune system is a problem. My office and the means of getting there are both kidney death traps. I’m cultivating a “Bubble D” persona. I will resist my polite impulses to hold doors open for people — the more door knobs I can avoid, the better.
    4. I have to stay hydrated.
    5. I have to not schedule three stressful hour long meetings back to back. I will carve out mandatory rest time in quiet corners of the office for myself throughout the day.
    6. I will figure out my long-term treatment schedule and all of the logistics around that as soon as I can.
  3. How do we stop the nazis?
    1. I can’t believe this is a very real concern.
    2. I don’t even know where to start with this right now, but there’s no time to lose.

Tomorrow I have a follow-up appointment with my oncologist and I have to schedule a follow-up with Josh for next week. Tomorrow I get to take a shower and change the bandage on my central line wound. Tania and the boys are coming for Thanksgiving tomorrow. I’m working to be out of my processing funk by then. I’ve spent most of today catching up on work and it’s been wonderful.

16
Nov
16

got some wins

Everything’s coming up D today you guys!

I’ve scored three major victories:

1 – I’ve negotiated snacks in between meals!

This low-potassium diet is no joke. EVERYTHING has potassium. I am on steroids and I am starving. The kitchen caught on that I’ve been hoarding anything I can to eat  between meals by asking for extra — usually saltine crackers and applesauce are the things I get away with. The dietician visited me again today, “Are you hungry between meals? Would you like me to organize snacks for you between meals? Cheese and crackers after lunch? A PB&J before bed?”

OMG YES I WILL EAT LITERALLY ANYTHING YOU WILL LET ME EAT I’M SO HANGRY

I’m simultaneously wasting away and bloated. My body doesn’t remember how to process white bread, apparently. I’ve eaten meat the last two days because I cannot subsist on bread, cheese, and green beans alone. I’m a hungry person. My family doesn’t call me “Snacky” for nothing. Please feed me.

If a PB&J actually happens, I might cry. I miss peanut butter. (Nuts are high in potassium but one of my favorite protein sources.)

2 – I’ve negotiated walks outside!

So long as I don’t leave the hospital premises, I am permitted on the terrace. I haven’t had sunshine or fresh air in 10 days, so I’m really looking forward to this. Plus, it’s a beautiful day in SF today!

3 – I don’t have to collect all of my business anymore.

By “business” I mean poop. No more specimen collections for the time being, unless I notice something weird. I get to flush myself again like a grown toilet-trained person!

In other good news, Josh was singing when he visited today. He’s still optimistic about my numbers now that they’re finally starting to trend how we want. We’re still all pretty confused as to how my numbers can be so bad and I can still be so high-functioning. I should pretty much be in kidney failure, but I’m still basically asymptomatic. I should be dizzy, I’m running on like less than half the blood of a normal person, but I’m walking just fine. My body is weird.

13
Nov
16

My Kidneys Suck.

Today is my seventh consecutive day in the hospital.

Let’s start at the beginning.

I first started noticing a decline in my health a couple years ago. Over the course of the last year, this decline has become more steep. It’s been really easy to blame common sense factors — getting older, increased stress, a germ-ridden commute on public transit everyday, and a lot of time in an illness-incubating office surrounded by other people that are constantly sick. For the most part, I’ve always been a healthy person. When I do get actually sick, I recover quickly. Most of the time all I really need is sleep and juice. When that doesn’t work, I break down and go to Urgent Care or something to get some antibiotics.

Sometime a few months ago, that stopped being true. Instead of recognizing that for the red flag it should have been, I ignored it for as long as possible. I found other things to blame — even more stress at work, a significant amount of emotional stress from ending a long-term relationship, maybe a little bit of a quarter-life crisis. It’s not like I felt sick constantly, there were plenty of days where I felt totally normal. What I failed to realize was that I was getting sick a lot more frequently, and then I started get more sick more frequently, at a pretty gradual pace pretty much all summer.

When I say I was getting more sick, I mean three things in particular:

  1. I was having a lot of migraines. 
  2. I was vomiting in the morning A LOT.
    Especially when drinking, especially beer. In general, there’s been a pretty significant increase in gastrointestinal sensitivity that I’ve never really had before. I’ve also been extremely sensitive to temperature and too much activity in the morning. I found myself unable to stand on the bus for the morning commute without absolutely feeling like I was going to either faint or throw-up. If there wasn’t a seat available on the bus, I would sit on the floor. I started carrying 1-gallon trash bags with me so I would have something to throw up into because it became such a frequent occurrence.
  3. I was contracting the random office colds whenever they came around.
    I was usually able to dodge these, or at least feel them coming and recover from them quickly with a few extra hours in bed. Not anymore — if someone gets sick, so do I, and I’m sick for days.

At the end of August, I contracted an upper respiratory infection. Even though I never developed a fever, it laid me out for a week. I’ve never been so tired in my life. I was either exhausted, suffering a migraine, or throwing up for days. When I recovered enough to go to work I slipped into a pattern that lasted for weeks where I spent every available ounce of energy I had just trying to get to and from work without collapsing and trying to be as effective at work as possible between sick days. I spent most weekends barely moving in bed trying to bank more energy for the week ahead. People started noticing something was really wrong with me. The stress of feeling so bad all the time and not knowing why was getting to me. I couldn’t find a connection between what I was eating and what was making me sick. I stopped drinking completely and it didn’t help at all. I made the smartest food choices I could and nothing seemed to matter. The migraines were unbearable. I was so tired on the weekends I couldn’t even sit up to watch football.

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Nurse Marcie

September 21, 2016

After an exceptionally sick day at work, I finally made a same-day doctor’s appointment at One Medical. Unfortunately, nausea and headaches are symptoms for literally everything. My doctor ordered blood work and prescribed me a antacid to help with my sickness in the morning when I suggested acid reflux might be a contributor. She remarked that my blood pressure was high. I said that it had never been high before and just ignored it–thinking it probably just had something to do with the fact that I’d been vomiting all day and was basically running on stubbornness at that point. I didn’t give it a second thought. She referred me to a gastroenterologist to dig into my stomach problems since that was my main complaint–he’s a busy guy, his first available appointment for a new patient wasn’t until November 1, so I take it.

The antacid did help — I got fully sick less mornings, but it didn’t eliminate it completely. Vomiting less meant less headaches, but I was still really tired.

I dragged my feet getting my blood work done. I needed to fast, but on mornings I didn’t feel bad I wanted to eat! And I didn’t want to get blood work done on a day I was already feeling bad because I hate needles and who needs the added stress? Plus, it’s hard to remember shit in the mornings and I like to use my mornings for getting caffeinated and easing into my workday.

October 21, 2016

I finally get my blood work done. The lab tech doesn’t say anything, but later that day I get an email from my doctor asking me to come in to talk about my blood pressure — it’s even higher than it was a few weeks ago. I schedule the first available appointment which is the following week. The rest of the week passes without incident. I’m tired that weekend, but for the most part I’m not doing too bad. I start noticing that my feet are a little swollen at the end of the day, and over the weekend I wake up with my face really puffy. I start googling that combination with my other symptoms and kidney disease becomes my new favorite internet diagnosis–but I don’t have any of the obvious kidney disease symptoms.

October 26, 2016

The day of my doctor’s appointment is the worst day I’ve had and still gone to work. I was sick in the morning, threw up on the bus, and threw up at my office. I couldn’t keep water down. I was basically going blind from the migraine that set in that morning. I sat at my desk in misery until it was time to leave for my doctors appointment.

My blood pressure when I got to the doctors office was 200/130.

Normal is 120/80.
Hypertension is over 140.
Anything over 180/110 is considered hypertensive crisis, signaling major organ damage.

As I’m sitting in this doctors office, having a perfectly calm discussion during a major health crisis, the rest of my blood work happens to come in.

“Oh. Your kidneys are not doing what they’re supposed to be doing.”

“Funny you should mention that. I noticed over the weekend that my feet keep getting puffy and kidney disease is my current favorite diagnosis!”

It’s 4:45PM and she immediately picks up her phone and calls another doctor — a nephrologist (which I found out is a kidney doctor). She tells me she’ll explain everything to me in a minute, but that it’s very important the get a hold of him before he leaves for the day. She spends the next twenty minutes on the phone demanding they make time for me in their office some time in the next two days, then reading my labs to the nephrologist and they figure out together which blood pressure meds to put me on immediately. She using words like “acute kidney failure” and “nephrotic crisis” and I’m writing things in my phone to google later. When she tells him my blood pressure and other labs I hear him say, “Should she be hospitalized…?” 

My doctor just looks at me and says, “She seems…ok? I mean, she went to work today and we’re talking and she’s walking…” I just kind of shrug. I mean, I don’t feel good, but I don’t really feel like I’m having an emergency.

They set an appointment for me for two days later and give me some meds for my blood pressure that I’m to take immediately. She tells me if anything gets worse or feels weird to go the emergency room IMMEDIATELY. I’m supposed to get my blood pressure checked the following morning to make sure the meds are working and double the dose if it’s still high.

I go to Walgreens to get my meds. I walk back to the transit terminal from Embarcadero and get on the bus to go home. I throw up on the bus (in a trash bag), but am otherwise ok. I wait for my sister to get home before taking my BP meds in case something goes wrong. I take them and everything’s fine, I go to bed.

The next day, I don’t get sick in the morning. I get my blood pressure taken before work and it’s lower, but not low enough. The doctor I see is concerned about my heart and gives me an EKG. The EKG is fine. We double the dosage of my BP meds and I go to work. I tell a few key people at work that something is up with my kidneys, but I don’t want to alarm anyone until I know what’s going on. I get through most of my work day, but get really tired around 4 and go home a little early. Eat some dinner and to sleep, missing out on Halloween festivities with all my coworkers. 😦

October 28, 2016

I work from home that morning before my nephrology appointment. My BFF/Soul-Mate   Brittany picks me up and drives me, waits with me, and sees the doctor with me, taking copious notes.

Dr Josh is nice goofy jewish nephrologist who knows what he’s talking about. He’s deeply concerned about my lab work and very confused as to why I seem basically fine. He explains the numbers in the labs to me.

My creatinine is very high. Normal is 1 and mine is over 2 — twice what it should be and therefore very bad.
My protein and iron are low, I’m extremely anemic. My kidneys are filtering out the wrong stuff.
My glomerular filtration rate (GFR) is very low. GFR is calculated using creatinine level, body mass, etc. It measures kidney function. Higher is better, but anything over 60 is considered normal. Mine is around 20. At 15 I’ll hit stage 5 kidney failure.

Everything else in my labs looks great — I’m otherwise a perfectly healthy person. My high blood pressure is definitely caused by my kidneys. He’s not sure why I’m vomiting so much, could just be the blood pressure–tells me to keep the appointment with the gastroenterologist the following week and keep taking the antacid as long as it’s helping.

He orders a kidney biopsy for the following Friday — it’s vitally important I get my BP down first. He prescribes additional blood pressure meds and tells me to get a monitor to track my BP at home. He orders more blood work and two 24-hour urine collections to rule out illnesses that could cause kidney diseases. I ask him if there’s anything else I can do and he suggests a low-potassium diet.

Potassium is rough on kidneys that don’t work. As it turns out basically everything I’ve been eating for the last ten years is high in potassium, as it’s the nutritious stuff I eat to offset my vegetarian diet. Everything I’ve taught myself about nutrition is now irrelevant. I’m relegated to white bread and flavorless vegetables.

I spend Halloweekend on the couch, taking my blood pressure and peeing into large orange jugs. I sleep a lot, but feel mostly ok. The BP meds are working and I feel a lot better. I’m not sick in the morning and I’m not getting headaches. Jess and I try to figure out my new diet — Jess takes it on like a challenge from Top Chef because she is the Greatest Sister in the World.

I work from home on Monday because my coworkers need not be privy to my urine collection. On Tuesday I go get my blood work done then see my gastroenterologist. He orders more blood work to rule out some things but thinks we should wait and see what happens with my kidneys before doing anything more invasive. I go get more blood drawn, then go to work. That blood work eventually comes back clean.

I’m able to put in two mostly full days at work before my biopsy on Friday. I work as hard as I can to tie-up as many loose ends as I can and set the team up for success. I tell a few more people and hope I’ll have more information the week following my biopsy. I’m ok.

I cancel the trip to LA I had scheduled that weekend, converting my floating holiday for Monday into a sick day for Friday. This is the second trip to LA I’ve had to cancel in two months because I’m sick and that’s the first thing I cry about in this whole ordeal.

Friday, November 4, 2016

I get to the hospital at 6AM for my biopsy. Josh comes in to tell me my lab work looks good — I tested negative for everything scary; syphilis, hepatitis, HIV, other autoimmune disorders. I’m otherwise healthy, but my kidneys are getting worse. Creatine and GFR numbers are moving in the wrong directions. Creatinine is already over 3, GFR continues to slide down. The biopsy will tell me how much kidney damage I’ve already suffered and we’ll be able to get a prognosis, but the only diagnosis really left is igA Nephropathy — which a brief google search reveals is a bit of a catch-all mysterious kidney disease that can be hereditary but isn’t always and has no known cause or cure, really.

A kidney biopsy is a very miserable experience. I’ll spare you the details, but avoid it if you can. I was left in a lot more pain than expected. Brittany hangs out at the hospital with me all day because she is literally the Best Ever and it really takes the edge off. All my nurses are super nice. I go home and spend Friday and Saturday completely immobile on the couch. Sneezing is murder. Laughing is worse. Painkillers are too dangerous for my kidneys right now.

I’m extremely lucky to live with my sister, who waits on me hand-and-foot and tries to concoct stuff that has no potassium and still tastes good. It’s a boring but relaxing weekend.

Sunday, November 6, 2016

Josh calls to tell me the preliminary biopsy results are back and I need to come to the emergency room as soon as possible to be admitted to the hospital. He wants me stay at the hospital for three days getting IV steroids to bring down the inflammation in my kidneys before I suffer anymore damage. He’s optimistic that we’ve caught it early enough and that we can reverse most of the damage that has been done already.

I let myself cry alone about this for about fifteen minutes. I’ve never stayed in a hospital before and now things are Serious. I text Brittany who calls me immediately and realizes immediately when she hears my voice that I don’t want to talk about it and just hangs up and texts me that she’ll meet me at the hospital. I call Jess and ask her to come home and get me.

I spend the next couple hours writing two long emails for work and finishing up two week’s worth of planning so my team doesn’t have to worry about it on Monday. J gets home, I pack up a bag, and we head to the ER. We call Mom & Dad on the way. M&D decide to rent a car the next day and drive down from Seattle.

Jess, Brittany, and I hang out in the ER for a few hours while the hospital sorts me out. We’re in a triage area sharing a room with a middle-aged hypochondriac and an older man with dementia who’s been restrained and wants every “son of a bitch” in there to give him the “goddamn scissors” so he can cut himself loose before they can clean his head wound. It is both awful and hilarious. I get my first steroid treatment while we’re waiting then they move me upstairs.

They move me to what we call the Fifth Floor Luxury Suite. It’s larger than most people’s apartments in San Francisco and definitely has a better view. Maybe this won’t be so bad! I eat hospital food for dinner and it isn’t terrible. Jess, Brittany, and I watch TV. Jess stays with me for the night after going home to take care of the dogs.

I don’t sleep at all. The steroids give me total insomnia. Plus I have nurses coming in every few hours to check my vitals. The 5:30AM blood draw is my favorite.

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Monday, November 7, 2016

I “wake up” that morning to a beautiful sunrise, which I cry about. Mood swings are a side effect of the steroids, so I just go with it. My sister Tania drives up that morning and hangs out with me, Jess, and Brittany for most of the day. We play games and because I’m not on any sort of diet restriction, Jess brings me in outside food. The nurses want to check my urine output but aren’t clear about that so I fumble through remembering if I’m supposed to keep it all day long until someone finally gives me clear instructions. It’s not a bad day for being confined to a hospital room. The worst part is that they’re monitoring my blood sugar so they’re pricking my fingers before and after every meal and I’m running out fingers.

When Josh comes by to talk about my labs, it’s not good news. We start talking about next steps we could try — chemo comes up. Chemo would stop my immune system from further harming my kidneys, but comes with all the shitty things that chemo does: infertility, hair-loss, general shit feeling. We also talk about plasma aphaeresis — a procedure similar to dialysis where a catheter is put into my neck and filters my plasma out of my blood and replaces it with clean plasma without my kidney-confusing antibodies.

Aja and Elora come by to visit that night and bring me more outside food. Seeing them takes the edge off quite a bit and I’m sad that I’m so, so tired.

I don’t sleep again at all that night.

Tuesday, November 8, 2016

Jess spends the night with me again and I enjoy another beautiful sunrise. Jess heads to work and I have some privacy before my parents arrive. One of my nurses, who I’ve grown attached to by now, reads me my morning labs on my request–I’d like to know what I’m in for. She gives me the numbers and I know I’m not going home. I cry. The nurses all still think I’m getting discharged today and keep mentioning it with excitement. Some of them hug me because they won’t see me again.

M&D arrive to take me home after my steroid treatment and I let them know I don’t think that’s happening. Between three days of high-dose steroids, insomnia, and the bad news I know is coming, I’m a bit of a basket case–by my standards. I’m barely holding it together, I’ve been stripped of all my coping mechanisms.

When Josh comes by he’s so sad. I let him know I’ve already seen my labs so we can jump right into it. Besides my numbers all still moving in the wrong directions, he lets me know he’s received an opinion from a second pathologist and the permanent damage to my kidneys might be substantially more than we expected. We do one more check to confirm I don’t want to talk to someone about harvesting some of my eggs before we start chemo. Carrying a child has never been part of my family plan–I need my kidneys, not my eggs, so we skip that step. The new plan is chemo as soon as possible, then getting the central line catheter put in so I can start plasma aphaeresis the next day. I’ll be at the hospital for at least two weeks to get plasma every other day. Josh mentions, not for the first time, how impressed he is with how well I’m taking all this. I’m still smiling and cracking jokes and optimistic that something will work and down to try whatever will. Optimism and a positive attitude feel like my only options, even though my body is strung out and exhausted and I don’t feel like I’m really filtering any of my emotions.

I spend Tuesday waiting all day long to get moved up to oncology to start chemo and the anxiety of it wrecks me. Despite Josh ordering the move at 10:30AM I don’t move to the sixth floor until 6PM. Election coverage is in full swing and everyone is freaking out and none of that is helping me at all.

Halfway through chemo I’m visited by my consulting internist. He expresses skepticism regarding the plasma aphaeresis plan and says he’s spoken to Josh and it might not happen. I immediately hate this man for introducing more uncertainty in my life. Surprises and unknowns are not good for my anxiety and I’m completely frayed as it is.

Chemo finishes without incident, Trump’s victory is announced, the internet is on fire, and I hate everyone. I’m clinging to optimism and positivity with everything I have and I need everyone else to get it the fuck together.

I don’t sleep again. I’m sharing a room with another chemo patient who’s definitely having a worse time than I am. The nurses in oncology are really nice and dig up a chair that reclines for my mom to sleep in. I don’t think she sleeps much either.

Wednesday, November 9, 2016

I wake up to nothing but uncertainty. Everyone is burning down over these elections and I spend the morning talking to my mom about the electoral college, and the voting rights act, and how frustrated I am that people are so shocked by this outcome after years assigning blame instead of building bridges. I’m fired up and I want everyone to get over themselves and start being productive. It’s frustrating that I have to get myself well first before I can get to work.

Anxiety mounts. Am I getting this thing put in my neck or what? Are my kidneys stable yet? Where’s Josh? I’ve noticed I’m having acid reflux in the morning again, have they not been given me my antacid in the cup of meds I take every morning? I’m taking so many fucking meds: calcium and vitamin D to offset bone damage from the steroids, antibiotics so I don’t catch pneumonia in the hospital, two blood pressure meds. I’m covered in bruises from days of blood draws and IVs and blood sugar tests. I’ve noticed a pain my lower back on the same side as my biopsy which no one is concerned about. I’m a goddamn mess and nobody has answers. My roommate is having a horrible morning and I feel really bad for her. I make a lot of jokes about being radioactive, but I also cry quite a bit. Mom cries too.

My nurse tells me I’ll head to radiology soon to get my catheter put in. FULL STOP. I’m not going anywhere until I talk to Josh. We do this dance for a couple hours where nurses keep trying to get me ready to go downstairs and I refuse until I have a conversation with my fucking doctor. They move me into a private room, which is awesome because I won’t have a roommate anymore, but the room is tiny and there’s no way it’s going to accommodate my constant parade of visitors comfortably at all. Still, I’m grateful.

The nurses finally tell me they’ve told radiology to hold their goddamn horses and Josh is on his way up. He’s so sad when he arrives. My numbers are still getting worse. He gives me an apple and we talk about how I’m going to on a low-potassium diet now and will start taking more meds to counteract negative effects of chemo.

They wheel me down to radiology to put in my central line. Everyone tells me how easy the procedure is and how great the team down there is. Radiology is where I had my biopsy and I wasn’t impressed with that experience at all so I’m on the verge of freaking out. The highlight of my day is when the nurse asks me if I want to go the bathroom first and I seize the opportunity to pee directly into a toilet and flush it myself for the first time in days. It’s the little things.

The team that puts in my central line is actually awesome, and considering they’re shoving three tubes into my jugular, it’s really not a big deal. My internist finds me in the hallway while I’m waiting for transport back upstairs and explains the plasma aphaeresis to me again in more detail now that it’s happening. He gets on the phone to try to schedule it immediately so we can get it over with and I can hopefully start getting better. He starts growing on me now that he seems like he’s full on Team D.

I only have a few minutes to settle back into my room and try to eat something before a tiny girl with huge machines shows up to start setting up my treatment. She kicks everyone out so we she can make room for the machines which ends up taking about an hour. Roche and I establish an easy report early on, which is great because I’m going to see her almost every other day for several hours for the next two weeks. Once the treatment is underway I get really claustrophobic and nervous and throw up. Roche is really nice about it and rubs my back. I discover these really awesome green bags the hospital has that are way easier to use than the 1-gallons I’m used to throwing up into on the bus. These green bags are my new BFF. I throw up a second time, but besides that my plasma treatment goes well. My internist drops by again, Roche loves him and he grows on me too. We all vent about the election results and try to laugh stuff off. I decide I like him after all, he’s made up for last night.

I try to eat a little something for dinner to settle my stomach and look forward to sleep–I think I’ve finally hit my exhaustion wall and it’s inevitable now that I’m off the high-dose steroids. I have limited success, but do manage to get a little bit of sleep. It takes me most of the night to realize my central line is going to be uncomfortable whenever I move, but will eventually settle.

Thursday, November 10, 2016

The absolute upside is that it’s my first day without any treatments so I have big plans to just fucking relax. My new nurse is my most favorite. She prints out my labs and goes over them with me–they still don’t look good and the chemo is already working to tank my blood levels, I don’t have much to look forward to besides inevitably feeling worse. For the first time I really feel how anemic I am. I shake all day long. Josh and my attending both talk to me about other treatments I might have to undergo to counteract the chemo effects —  we talking about iron infusions and blood transfusions. Another resident drops by to introduce himself — I get the sense that I’m getting talked about a lot in the hospital. Josh is consulting everyone be can for ideas on why my presentation of igA Nephropathy is so aggressive and weird. Lots of people are researching. I like this new resident. He’s very interested in my mind-body connection and encourages me to get up and walk around whenever I feel up to it.

Ann, my new favorite nurse, brings me clean linens and I clean up myself and she remakes my bed. She brings me an air mattress to top my bed — these are usually only for people who don’t get out of bed at all, but she likes to offer them to everyone. I welcome the change in texture, my back is starting to bother me. I’m able to nap a bit and start feeling better. Leo and Aja come to visit me that night. I’m pretty tired and out of it but it’s so, so nice to see them and hear about how things are going at work and just talk about stuff that isn’t my health for a while. Aja stays pretty late and I’m sure sleep is mine.

Unfortunately, I lose Night Nurse Roulette. The nurse I have doesn’t get a good hand off and is not familiar with my chart. She doesn’t realize slightly elevated blood pressure is normal for me and makes it her personal mission to lower it. I’m getting woken up every hour for BP readings and they’re giving me a bunch of meds to lower it. My BP basically crashes and I feel like total garbage. I get no sleep at all even though I’m dead tired and my mind isn’t racing for the first time in days. I’m furious.

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Plans for the Day: Enjoy Nothing!

Friday, November 11, 2016

One of the upsides to the central line catheter is that I don’t have to have blood drawn from my arms anymore because they can take it from there instead. When a nurse comes in at 5:30AM, turns on all the lights and starts trying to take blood from my already insanely bruised arm, I almost murder her on the spot. It’s the most impolite I’ve been to anyone in the hospital and she bears the brunt of my anger for the night I’ve had. I don’t see her again, another nurse comes in and takes blood from my central line. I ask them to page Josh and my attending, I want to talk to both of them as soon as possible about the unnecessary interventions made to crash my blood pressure.

I’m basically impossible that morning. I feel bad for my parents, I’m in a horrible mood, I’m so tired and so frustrated and righteously indignant about being robbed of so much sleep. I cry.

Kendra has the day off and visits me. She brings me comic books and hangs out for hours and it’s very pleasant all around. I wish I was in a better mood and not so tired, I mostly lay there strung out from exhaustion, but she doesn’t seem to mind. It’s nice to listen to her and my parents talking.

It’s a busy day for me. I have plasma aphaeresis and immediately after have to receive my first iron infusion. Chemo is tanking my red blood levels and my body needs to be able to make its own but won’t be able to with how anemic I am. The plan is to give me iron to make a bridge, then give me a hormone to stimulate red blood cell production and I should feel better. This seems to me like a lot of intervention for someone spending two weeks in bed, but I’m not a doctor and we’re trying to avoid a blood transfusion. Iron infusion is low risk, so it’s worth it. Plasma takes two hours, iron takes closer to four. Besides a bout of dizziness at the start of my plasma treatment, it goes off without a hitch. Roche jokes that I’m allergic to her.

Iron goes fine for the first three hours. My mouth tastes terrible, but I can live with it.

When there’s only an inch left of iron in the bag and I think I’m in the home stretch, things take a turn.

After days of anxiety my chest is already really sore from my heart pounding, deep breaths are difficult, and now I feel myself having really painful cramps/contractions in my stomach that are reverberating up through my esophagus and really hurting my chest. Right as this starts ramping up I notice fluid is collecting in a large bump on my right hand. Nothing feels right and I start to freak out. I call the nurses and they all think the bump on my hand is weird and page the doctor. When I tell them about my stomach they misinterpret it for nausea and starting treating me for that. It does nothing. I spend the next several hours the most violently ill I’ve ever been in my life and completely freaking out. I’ll spare you the details, but imagine the worst food poisoning, hangover, menstrual cramps you’ve ever had, multiply them together and throw a mild panic attack on top of it. I went through four or five of those green bags. I cried out in pain. I couldn’t breathe. The only thing that got me through is I basically reverted fully into a fetus and my mom was there to run a cool wash cloth down my back until I finally finished throwing up and passed out.

The nurses left me alone that night. I finally got some sleep.

Saturday, November 12, 2016

I wake up looking forward to another day off — no treatment day!

Wrong.

I’m scheduled for another iron infusion. All the nurses want me to have a blood transfusion because my hemoglobin is so low. I don’t even feel tired (I’ve slept! I’m not shaking! I go for a walk around the floor with my sister after breakfast!) According to my labs, my kidneys are finally stable! Brittany and her mom come to visit that morning and my parents finally meet the mother of my best friend for the last fifteen years. It’s nice.

Josh is off for the weekend. My nephrology sub is the physical embodiment of everything that’s horrible about western medicine and I hate him. He reminds me of a 1920s oil baron. It’s clear he thinks it’s stupid Josh won’t just order an inevitable blood transfusion and is settling for the iron treatment.

We hook me up to the iron and everything is fine again until the exact same thing happens as last time, with the same amount left in the bag. Mental coping is 90% of the battle for me for basically anything, so I do a lot better, even though I’m still in agonizing pain and throw up for hours again. My mom rubs my back and I just try to ride it out until my body finishes and I sleep. It’s horrible, but I don’t feel like I’m going to die this time. My internist and my attending both come by when I’m in the middle of this and everyone starts taking my apparent rare iron sensitivity very seriously.

A few hours later the nurses wake me up to move me to another room. They’ve found a bigger one with one of the best views in the hospital and they’re SO EXCITED. I’m still half asleep and having bad cramps, but I smile as much as I can and say thank you. I sleep more and eat all my dinner when I wake up.

I don’t get much sleep. I’m still having painful cramps from the iron treatment and my dad snores super loudly all night. I rest at least.

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I hate you, iron treatment.

Sunday, November 13, 2016

I wake up pretty sleepy, but my stomach feels better. I eat all my breakfast and Aja and Jason come to visit in the morning. We talk with my parents for a while and things feel pretty normal. I’m in good spirits. The only thing I have today is a plasma treatment.

Wrong.

Dr. Oil Baron comes in and tells me I’m getting a blood transfusion after my plasma treatment. Fucking great. I try to make the case that maybe we should wait until tomorrow. I’ve already spoken with my internist about how I’m getting some human plasma today which could cause an allergic reaction, so I’m already looking at enough unknowns. He tell me it’ll be fine. Ugh.

He does deliver a single piece of good news: My creatinine is down from 3.9 to 3.8! FINALLY, something is moving in the right direction! It’s not enough to touch my GFR, but it is the first time that number has gone down instead of up, so things might finally be working.

To add insult to injury, my nurse of the day is the least thorough one I’ve had and I have zero faith in her ability or inclination to meet any of my very simple needs–I even end up reminding her she needs to bring me my 20 morning pills. Great.

Roche is off today too, so my plasma nurse is a stranger. He turns out to be really sweet and perfectly competent, but does not get along with my nurse so I feel like I’m at the mercy of the B Squad and it’s not ideal.

Plasma goes quickly. It’s a lot easier to set up in this bigger room — Roche will be thrilled. Things seem to go fine with the human plasma and they order the blood transfusion to come up. Then I start noticing my hands are itchy. Then my back is itchy. I page my nurse and tell her I’m having a reaction. I request the benadryl my internist assured me would be pre-ordered just in case. It hasn’t been pre-ordered. I wait nearly an hour for a fucking benadryl I could have pulled out my own backpack. By the time it arrives my entire body is covered in an itchy almost painful rash. I mostly laugh about it.

My internist arrives right after the benadryl does, right before transfusion blood shows up from the blood bank. They central line the benadryl and I feel relief almost immediately. I know I’m going to fall asleep any second because nothing knocks me out like benadryl does. My internist tells the nurse to take the blood back to the bank before it expires, I’ve been through enough and my allergic reaction to the plasma all but guarantees I’ll have a similar reaction to the blood. He makes a call and gets the blood transfusion held off until tomorrow — we’ll check my labs in the morning and see if I even need it, and if I still do we’ll be extra careful to match me and make sure pre-medication is available so I don’t have such an extreme reaction. My hero.

I pass out in the middle of the Niners game and don’t move until the second quarter of the Seahawks game three hours later. I finish my lunch and immediately order dinner. It’s the best I’ve felt in days. My rash is gone.

Can’t wait to find out what happens tomorrow.

I still don’t know if I’ll be home for Thanksgiving, or if I’ll even be able to eat any of it anyway. We still don’t even know if I have a chronic kidney disease or if this is something I’ll fully recover from soon. We’re doing everything we can to save my kidneys, but it remains to be seen if it will be enough.

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Thanks for the Vitamin D, Alice!




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