Posts Tagged ‘iga nephropathy

28
Jul
17

Five Weeks

I'm officially not anemic anymore!

My creatinine is well below 1!

My GFR is holding at 95! 95!!! Up from 7!

I feel great! My incision has healed up nicely. I'm hardly experiencing any discomfort at all anymore. I'm getting my strength back, walking as much as possible, and going up stairs. I'm drinking, and staying out late, and still have plenty of energy to work five days in the office and go out on the weekends.

I have my life back. I haven't felt this good in years.

I got to taper my steroid dosage back down to 5mg this week. I don't seem to be experiencing much side effects from any of my new meds, except possibly some insomnia from my anti-rejection meds. I've been having a hard time falling asleep and only staying asleep for 4-6 hours most nights. So far, that's enough to keep me highly functional, though not ideal.

I was able to gain back 5lbs pretty quick, but I'm still a bit underweight. Things seem to have plateaued, so I think I'll be stuck here until I can do more physical activity and build some muscle back up.

My twice a week labs are getting pretty tiresome, but maybe those will get reduced at my doctor's appointment in a couple weeks.

Everything's great, and I'm so, so happy.

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16
Jun
17

7 Days

MY KIDNEY TRANSPLANT IS ONE WEEK FROM TODAY AHHHHHHHHHHH!

So crazy. Am I anxious? Yes. But mostly anxious-excited. I’m not really allowing myself to think about the stuff that’ll make me anxious-worried. It’s been a little challenging — usually, the way I cope with stressful situations and stay so level-headed is by processing potential outcomes in advance so that I’m prepared. Unfortunately, this situation is a little more high-stakes than usual and I’m trying to avoid freaking myself out. Also, I feel very strongly that I should not put any negativity around this into the universe right now, which is why I will not list my concerns out loud. Superstitious? Maybe, but I’ve seen it work the other way where I put a positive idea into the universe and it happens, so let’s not chance it.

ANYWAY I’m super looking forward to my terrifying major surgery next Friday, and so is my sister!

I’m also trying not to fall into a trap where I think about how after the surgery everything will be “back to normal”. This is not the case — I’ll still have chronic kidney disease, and I’ll still have the very mysterious autoimmune issue that caused the kidney disease. I’ll be on immunosuppression meds probably forever. I might have to stay on hypertension meds because of the immunosuppression meds. But! I probably won’t be puffs anymore, my back won’t constantly hurt, and I’ll be able to eat whatever I want without tasting unfiltered waste in my mouth anymore! I shouldn’t be extremely anemic much longer, which means I won’t get dizzy sitting down and be constantly on the verge of fainting. I’ll have enough energy to work five days a week and go out on the weekends, eventually. It’s exciting stuff. I get to LIVE!

I don’t really have a sense of how long my recovery is going to take. All the available information is for people over 65 and I am absolutely a spring chicken. By the numbers I should have been on dialysis weeks ago, so nothing typical here. I’m crossing my fingers for about two weeks, because that would work out best with my current work situation, but even I think that’s maybe delusional optimism. But I’m basically completely functional without kidneys, so… we’ll see.

I’ll let you guys know how it goes. 

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”.

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.

 

 

 

24
Nov
16

Gratitude

I have a lot to be thankful for today.

I am home for the holiday.

I am surrounded by family and friends, many of whom have dropped everything at some point over the last few weeks to show up for me. Those who haven’t been able to make it out in person have called, texted, sent packages, and let me know in other ways that they got my back. I’ve reconnected with loads of people I care about and have been neglecting for years. I’ve fortified old bonds.

Even though lab results say I’m really sick, I don’t really feel too bad. I’m tolerating my low-kidney function and anemia extremely well and am not very limited. I’m not having debilitating headaches or nausea anymore.

I’ve been diagnosed with a very serious chronic illness at a time in my life when I am very well-insured, in great financial shape, very self-assured, and already prone to making positive lifestyle changes. I’m a grown ass person with my shit together.

It’s my kidneys and not one of the harder-to-get-or-live-without organs. There’s still a chance they’ll get better and I won’t need a new one.

I have a mysterious kidney disease and not something worse. 

I experienced a two-week hospital stay at what has to be the nicest hospital in SF as a very privileged white English-speaking American citizen and it is not lost on me at all how much different things could have been if any of those things were different. I don’t really know how I would have survived those two weeks without the internet and speaking fluent English, without family and friends around to keep everyone accountable and on point. My heart goes out to anyone (TONS of people, probably most people) who’s ever had to do something like this alone, in a country that treats them like a second-class citizen, in a language they don’t completely understand, under full financial duress. Fucking awful.

I don’t find it exhausting or stressful to be around my parents. They’re not republicans or completely backasswards in anyway. They do not ask me stupid questions, or make weird things about themselves. They love and support me unconditionally and always have, especially when I’m being an impossible jerk. This goes triple for my sisters, even though one of them is a little too delighted by my chubby-again cheeks.

As it turns out, my out-of-hospital potassium limit is not that tight, so long as I don’t do something stupid like try to live off of bananas and avocados. I’m already accustomed to a low-protein diet from years of vegetarianism, I just need to be careful with nuts and cheese. This sodium-limit is challenging, there’s secret salt in everything — but salt is on a lot of people’s radar and having a sodium restriction is a very accessible concept to people, so it’s easier for me to manage.

Mom and my sisters have been in the kitchen all day constructing a wonderful salt-to-taste feast, and have provided me all of the ingredients and nutritional information we can collect so I can make good portion choices. I am literally under doctor’s orders not to help at all (I am not allowed near anything sharp until my “clotting factors” are back up — I nearly lost a finger last year slicing bread, so this is a smart choice), so I am sitting around like a lazy sausage bum and having a very relaxing day.

Best Fam Ever

I weigh one pound less today than I did yesterday and have spent a lot of time today researching natural diuretics that won’t interact with my blood pressure meds. I have some ideas. I slept with my sausage legs elevated last night and I’ve kept them up all day today so they’re a little less tight. Mom gave me a nice massage. 

I got to take a long warm shower last night and take all the hospital-grade adhesive off of my neck. As you can see, my central line wound is very unimpressive and my neck is mostly irritated from the tape, which will heal quickly. I’ve downgraded to a normal bandage for a few more days. 

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So much fuss for a little hole.

I am very excited for dinner. Jess and I have been hosting Vegetarian Thanksgiving for the last several years. With everything going on we decided to ask Mom to do a turkey again this year. It smells like childhood Thanksgiving. Dad’s mashed potatoes are my most favorite food. Potatoes are high in potassium, so this year we’re also making mashed cauliflower so I can fill the void with something similar but less dangerous. I can’t wait to eat. Thank god green beans are also low in potassium. 

Happy Thanksgiving!

23
Nov
16

Sausage D

Nurse Marcie says Sausage D is still good for cuddles.


I feel a little more normal again today. 

By which I mean as a person who can maybe function in society again — which is not how I felt for the last two days. 

But today feels a little easier. I am constructing full sentences again. I think my face is emoting. I am not completely paralyzed by questions. I am not constantly on the verge of crying. 

I still feel like a sausage. When I was admitted to the hospital I was 120lbs — the same weight I’ve been since I stopped eating meat and highly processed sugars after college. Today, I weigh 140lbs. I’m carrying around 20lbs of extra water from these fucking steroids and it’s making me completely miserable. I realize 140lbs is still a fairly lean weight for someone of my height, it’s not really the weight gain I take issue with. It’s the way I have no control over how this extra weight is swashing all over my body with gravity. Because I spent all day yesterday sitting up in a chair, all of it is in my legs and feet today. It’s hard to walk, it’s hard to bend my legs. It’s painful for my feet, shoved into my narrow shoes. The puffiness in my face makes it hard to keep my eyes open. The vanity of not looking like myself is secondary to the level of discomfort that I’m in. 

Not that the body dysphoria I’m experiencing as a result of this is a picnic either. 

I’m lucky my preferred aesthetic is on the loose-fitting side so I still have clothes that fit. I can’t imagine how much more traumatizing this would be for someone coming into this situation with pre-existing self-image issues. What a nightmare. 

Mom and I are currently sitting in holiday traffic trying to get out of the city after my follow-up oncology appointment. The traffic is actually not too bad by SF rush hour standards, but Mom doesn’t believe me, haha. We’re both starving and pretty irritable. In typical doctors office fashion, they asked me to get there 15 minutes early (so I was 20 minutes early), then my doctor was 45 minutes late. After talking about how much my life is going to suck for the next 6+ months, I got to watch someone arbitrarily schedule the next 6 months of my life in a way designed specifically to undermine my career, then we got to wait another hour so I could get my hormone injection (which hurt, I still really hate needles you guys). 

We’re starving, I’m late taking my afternoon meds, and we’re trying to beat people to my house. It’s a rough day. 

But! Besides, Sausage D, I feel pretty good. My energy is up, my hemoglobin is up to 6.9, I slept pretty good last night, and today I get to take a shower! A shower in my shower! I get to wash some of the industrial strength adhesive off my neck and hopefully downgrade to a less intense bandage. My fancy paramedic sister will be around for this to make sure we do a good job. I put on real clothes today and left the house and did human things. 

I spent a lot of time last night cross-referencing my potassium, sodium, and protein lists and populating a spreadsheet that will be the foundation of the diet-tracking tool I’m building. They bumped up all my limits a little bit from what they were in the hospital and I think I’ll be able to figure out this diet thing pretty good and not starve to death. Tomorrow will be a challenge with Thanksgiving, but my family continues to be extremely supportive and accommodating and I think it’s gonna be pretty great. Just gotta watch the salt! 

Oh look, drawers full of things I’m lucky not to have! O.O

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.




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