Posts Tagged ‘glomerulonephritis

26
Feb
17

Kidney Wanted

Finally had my Kidney Transplant Evaluation this week!

I have been evaluated and found deserving of a donor kidney! Hooray!

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No real surprise there, as the ongoing theme continues to be I am in perfect health, besides my mysteriously failing kidneys. They’ll run some tests just to make sure, again, but looks promising. It also sounds like, barring complications, my recovery time is likely to be about half or less than what is usually projected.

As expected, it was mostly bureaucratic hoops. We didn’t really learn any new information, as it was mostly geared towards people who don’t read pamphlets or use the internet. We “watched a video” which was actually a narrated power point presentation containing identical information as a packet I received and memorized three months ago. We spent more time in waiting rooms than talking to medical professionals, as usual. We spoke with another nephrologist, who ran a basic physical on me; and a social worker, who asked me a bunch of questions I could easily lie about, but didn’t. The whole thing kind of felt like starting a job at Target. You take a questionnaire with a bunch of extremely obvious behavioral questions and you watch a safety video about the dangers of wrapping a power cord around a ladder during a flood or something.

ANYWAY, that’s over with and now I’m officially on the UNOS list and eligible to receive a donor kidney!

I have type O blood, which is the rarest recipient type — I can only receive another type O kidney.

The current wait time for a type O kidney in the Bay Area is 6 years.

I am already in Stage 5 end-stage renal disease (ESRD) according to my numbers; GFR is holding steady at about 13, and my creatinine continues to slowly climb–it’s at about 4.5 now. It’s been months since I was hospitalized and they’re still not getting any better. Without a new kidney, it’s only a matter of time before I start showing symptoms and need dialysis to live. By all accounts, being on dialysis is terrible. Plus it reduces my life expectancy significantly and makes it more complicated to get a transplant. Time is of the essence! Luckily! I have a lot of caring people volunteering to give me their kidney. Even if we don’t share the same blood type, or aren’t a good match due to antibodies, a viable donor could still help me get a kidney through paired donation.

My transplant nephrologist has made it known to everyone in the transplant program that “we should be moving faster than we normally would”, and that announcement has already been effective. We were told my sister would have to resubmit the questionnaire she filled out months ago before she could start her lab work up and that there would be a totally arbitrary bureaucratic two-week waiting period before she was even called back to schedule that. We were waiting for me to get my usual lab work done when I received a call telling me Jess wouldn’t be waiting after all and could go ahead and get her labs done that day. Later that day, they called my mother and sent her the lab order to get hers done as well. Things are happening!

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Once a match is found, we could be scheduling surgery inside of six weeks. Jess and I suspect the thing we’ll end up waiting on is insurance.

If you would like to give me your kidney, please read this informative post and start by filling out this questionnaire. You will need my full name and birthdate — please message me privately if you have any questions.

In other news, I’ve mostly bounced back from that hemoglobin dip I saw a couple weeks ago that tanked my energy for a few days — it’s back up to 9. Apparently, 8.5 is about my cutoff for feeling like shit. Thanks anemia! Still not sure what caused it, but I’m still hoping to solve it with some adjustments to my diet. I’ve also bounced back from that mishap with my BP meds that happened around the same time. I no longer feel like ALL OF MY BONES ARE COMING APART, which is great. Also! My BP has been around 125/80 which is super normal! Hopefully it holds. My steroid dosage is down to 15mg now (from 60mg when I left the hospital) and I’m having a lot less side effects, so that’s substantially improved my quality of life. Insomnia isn’t really an issue anymore and my mood feels more stable overall most of the time. My mostly-vegan, low-sodium diet continues to be the best for managing my fluid retention, so Sausage D isn’t much of an issue anymore, even with the added fluids from chemo every month. I’m in pretty good shape. Hopefully, as we continue to taper down my steroids, my face will go back to normal and if I can keep my hemoglobin up I won’t be so tired. I’m still in near-constant pain on my left side, which concerns me, but doesn’t seem to be concerning anyone else. Sounds like so long as I’m not vomiting again, fainting, or peeing blood, I’m “fine”.

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02
Jan
17

Research Mode

Things have been a little rough, but I’m turning them around.

As it turns out, going through the Stages of Grief on steroids during the holidays with your family around is the recipe for a horrible nightmare.

Or at least pretty serious depression. But who can tell, with the steroids?

But, the holidays are over now and I’ve reached Acceptance (again, for now) and I go back to work tomorrow and I’m feeling a lot better. For now. Until my next mood swing. Or spot of bad news.

I’ve done a lot of research into my disease this week. It started as research into an alternative diagnosis, spurred on by a few things:

  1. Everyone keeps talking about how “very unique” my case is.
  2. IgA Nephropathy is a very dissatisfying diagnosis — cause is unknown and it’s a bit of a catch-all.
  3. IgAN is not a something I want to have — it has no cure, known treatments are basically 50/50, and it could recur even if I get a kidney transplant.

So, I went hunting for a new diagnosis. It seemed promising at first. All of the American scholarship around kidney disease is typical American bullshit — focuses exclusively on old white guys with kidney disease, skewing all of our data. In America, we don’t even really bother screening for kidney problems until it’s way too late, lest we give people an opportunity to actually adjust their lifestyle and not kill themselves with sodium overload and a high-protein diet. It’s so fucking stupid. In Asia, they screen young people regularly for early signs of kidney problems, which tons of people have, so they change their diet and repair their kidneys and live longer without chronic kidney disease. The fact is we’ve just accepted that the kidneys degenerate over someone’s lifespan and have decided to not really do anything about it and then just blame it on high blood pressure or diabetes when it becomes a problem when people are 70. The problem I’m having is something has caused my kidneys to degenerate extremely fast 40 years early and no one call tell me what that is, which is exceptionally frustrating. I didn’t suffer an injury to my kidney, I’m not diabetic, and it’s unlikely I had high blood pressure before my kidneys were damaged. So what caused this?

I went looking for cases of kidney disease in other young people in other parts of the world. I was able to dig up that dehydration is most certainly a factor — kidney disease is killing young farm workers in Central America and India at alarmingly high rates. Unfortunately, I have about as much in common with young farm workers as I do with someone who’s 70, so this information is of limited use to me. I did discover that what’s happened to me is starting to happen to more young Americans, and also younger people in urban India. There’s certainly a lifestyle component, but that alone doesn’t explain what’s happened to me — otherwise everyone my age would be in kidney failure. High blood pressure is a red herring. It comes with the kidney failure. If I had HBP long enough to cause kidney damage I would see damage in other organs as well, which I don’t.

I live a substantially healthier lifestyle than the average person my age, so the only thing that actually makes sense is that something totally stupid and random like igAN would happen to me. I’ve been doing a lot of things right since college — my vegetarian diet is already lower protein than most people’s and much closer to the recommended. I had already been making efforts to reduce sodium. I was already avoiding things like transfats and high-fructose corn syrup and refined sugars and other additives and flavorings and things that aren’t actually F O O D. I made all of these changes 7-8 years ago. The only thing I could have really done better is eat less cheese. I could have been exercising more, but I walk a fucking ton, more than enough to keep healthy. Healthier than average. Healthy enough to avoid fucking major organ failure. I’ve already been drinking less alcohol the last few years than I was before. I’ve limited my coffee to one strong one a day (most days) for the last five years. I’M A HEALTHY FUCKING PERSON. Which I’ve had confirmed, aside from my kidneys, all of other organs are in tip-top shape, including my heart and my liver which are now at the greatest risk. My blood sugar is great. My cholesterol is normal. It’s really frustrating to be googling lifestyle changes to help my kidneys and find a list of shit I’ve already been doing for 8 years. Salt being bad for you is not fucking news to me. I guess I’ll eat less cheese and chocolate. I’ve already cut out alcohol and caffeine.

So, I took the long way around, but ended up validating the igAN diagnosis.

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A disease of the kidney, specifically a form of glomerulonephritis: an inflammation of the glomeruli of the kidney.

“Very rarely (5% each), the presenting history is:

The proteinuria and cutaneous edema characteristic of nephrotic syndrome are my two main kidney disease symptoms — they’re the ones I had leading up to my hospital stay and the ones I still have now that my kidney function hasn’t improved. Plus the hypertension and anemia I presented with, but don’t have anymore. My anemia is nearly cured, maybe, and my hypertension is managed with meds for now. I get other kidney symptoms; flank pain, so far only on my left side, as punishment for not following my diet well enough and straining my kidneys; and still fatigue. Everything else I’m dealing with is side effects from treatments, or issues related to my pH/electrolyte/nutritional imbalances due to kidney failure, which are mostly managed with meds. For example, my calcium absorption is all fucked up, plus the steroids are actively trying to wreck all my bones. I’m at risk for hypocalcemia, so I’m taking a ton of calcium supplements everyday, but if my eating schedule gets weird, or I forget to take them, or I take them to close to food or other meds that block absorption, I don’t get enough calcium, and I get tremors (which could also be from the steroids, or just fatigue), or if I do this badly for over a day, I get cramps in my hands and feet. My left hand, in particular, making it really hard to use. So, it’s a fun trade off. I can eat cheese and insure I get enough calcium, but I’ll know I’m straining my kidneys when my back/side starts fucking killing me; or I can not eat cheese (be miserable) and be hyper-vigilant about my calcium absorption otherwise my left hand freaks out while I’m trying to drive somewhere.

Now that I’ve settled into my diagnosis, shitty as it is, I feel more proactive again. I’ve doubled down on research into my disease. Josh has thrown all the available conventional treatments at me already, and there’s basically only a 50% chance they’ll have any positive effect. The best case really just postpones the inevitable — Stage 5 kidney failure. Stage 5 means dialysis and kidney transplant if I want to live, so postponing that is good. My numbers are already technically Stage 5 numbers, but I’m still symptomatic of Stage 4, which is good, but not comforting in the slightest. Finding a living donor kidney and setting up my Backup Plan is still Priority 1. (Has been difficult to get any traction during the holidays — the transplant program office has been closed for non-emergencies.) Transplant comes with a ton of new bullshit and it won’t cure my igAN, so I’m probably looking at immunosuppressants for the rest of life, which is really really depressing. So we’re just going to not think about that now because there’s nothing we can do about it and it launches me into a pit of despair which I already cried about for like five straight days.

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What I can do something about is my diet, which I’ve been led astray on a bit. I should definitely continue being vegetarian. A low-potassium vegetable-based diet is the best thing for my kidneys, not to mention the rest of my body. There’s too much protein and phosphorous in most dairy, so I’ll be limiting those more strictly as well. This makes me feel better. Onions, red bell peppers, garlic, parsley, and apples are my kidney superfoods and I’m going to eat them everyday. Over the Christmas weekend I ate way too much cheese and chocolate and I super paid the price for it — I had persistent flank pain for days, some of the worst fatigue since the first few days after leaving the hospital, headaches (not migraines), and just the most depressive fucking mood. First I blamed what I assumed (hoped?) was low blood levels from my chemo nadir, but labs came back and my blood levels were up, so that wasn’t it. Then I ate just vegetables for two days and felt better. Vegetables are the best.

Because my blood levels were so good the other day I didn’t get my hormone boost, so now we’re experimenting to see if they go down without it or if I’m not anemic anymore. The phrasing the nurse practitioner used was “it’s a little risky — hopefully in a week we don’t see you circling the drain“. That seemed a little indelicate, for someone I had just met, even by my standards. But anyway, it’s almost a week later and I still feel pretty good. I have chemo next week, so we’ll find out then. It took me a week to lose the 8lbs I gained from chemo last time, so looking forward to that again. Right now I’m down to 123lbs, which is nearly what I was before I went into the hospital, so normal. I’m still Staypuft from the prednisone, but less Sausage D in general. I’m not due to see Josh for another 3 weeks, but I think I need to get him on the phone sooner, because we should be tapering my prednisone sooner than that if we can. I finally had my follow-up with my PCP last week. Last time I saw her was the day we met and she immediately identified I was in kidney failure and threw me at Josh, so obviously a lot has happened since then. I was still in a pretty fucked up emotional state when I saw her. She offered to refer me to a therapist.

I get a week of normalcy this week, which I’ll need because work is going to be crazy. Getting through it with my prednisone mood swings is probably all I can fit on my plate.

 

 

 

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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