Posts Tagged ‘kidney failure

14
Mar
17

More bad news I’m afraid: we find out a couple days ago that J can’t be my donor. Mom and TK are still in the process of getting tested, so hopefully we have better luck with one of them. Fingerscrossed!

In the meantime, my health is not in total freefall — my labs from last week came back and my estimated GFR popped back up to 11, phwew! Unfortunately, I still feel like shit more than I do not feel like shit lately and if I don’t find a kidney soon, dialysis is pretty much imminent. I had an appointment with Josh yesterday to check-in and go over options. We talked about my recent symptoms and everything’s pretty consistent with uremia due to kidney failure, I can only expect it to get worse as waste continues to build up in my body. The only thing I can really do is continue watching my diet and educate myself on dialysis so I know what I want to do if/when the time comes.

Josh referred me to a dialysis info session I have to go to, but he gave me a brief overview.

There’s two types of dialysis: hemodialysis and peritoneal dialysis.

Hemodialysis is what people traditionally think of — a catheter or fistula is hooked up and blood is removed and filtered through a machine before it’s returned to my body. I got a taste of this while I was in the hospital, as the plasma aphaeresis treatments I was getting were a very similar process. I would have to do this every other day or so at a special facility and it would take about 4 hours. That’s a pretty substantial chunk of my week.

Peritoneal dialysis is, as Josh has described it, “underutilized”. It involves hooking up a tube into my abdomen through which fluid can be added and removed. This fluid flushes my abdominal cavity and removes wastes from my blood by using the lining of my abdomen as a filter. This can either be done a few times a day, or with the help of a machine, every night while I sleep at home. This puts a lot of responsibility on me to stick to a schedule and keep my tube site super clean and figure out how much fluid I’m supposed to use, but it lets me have a more flexible schedule and normalish life. It also does the job my kidneys should be doing every day again, so I should feel better more often and I’ll be able to eat potassium again. Josh really tried to sell me on this peritoneal dialysis and he did a good job, but I still need to obsessively google everything so I can make an informed decision.

Ideally, I’d still like to find a kidney and avoid dialysis entirely. But Josh said it’s important I don’t let myself get completely rundown before starting dialysis, and I just don’t have that many kidney donors in the testing pipeline right now, so better to get my ducks in a row before it’s an emergency.

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If you’re healthy and you’d like to give me your kidney, please read this post.

In other news, I don’t have to take the antibiotics I’ve been on for 3 months anymore and we’re going to continue tapering down my steroids! A mg a week until I’m down to 5mg. Very exciting!

14
Dec
16

Get me off this rollercoaster. 

Having a total blast at Chemo!

Double time fluids hollaaaaa!

No, that’s not true. Chemo’s a drag, and I had a bit of a rough start this morning. I’m really tired today — like regular I-was-up-late-and-I-had-to-get-up-really-early-and-I-wish-I-had-coffee tired. Then my nurse had a bit of a rough touch getting my IV in, then it bled everywhere, then it slid out a bit, then I almost fainted, because even after weeks of this I still have a pretty substantial anxious response to needles which is super obnoxious.

NOTE: This is draft ten of this post. I’ve been trying to get a post out since Saturday and just can’t wrap this up, and now it’s changed tone so many times from new developments over the last few days, I’ve decided to keep what I drafted earlier today when I was still getting Chemo and I will update below with the current state of things. I’m writing to you now from insomnia on Wednesday after Chemo. 

I’ve been on a fucking rollercoaster today and jesus am I ready to get off. I’m just gonna write this, hope it’s cathartic, go to sleep (hopefully), proofread tomorrow (maybe), and hit post. Things are gonna get a little more personal in this one, read at your own risk. :END NOTE

I really hope Chemo doesn’t wipe me out. Aside from tons of pain related to water-weight I’ve been feeling super good lately! We adjusted a bunch of my meds at the start of last week, and the last few days I’ve been feeling really good. I’ve been getting more sleep, I’ve been losing weight, and my energy has been great. My BP is hovering around 130/80 now. My hemoglobin is 10.4 today, which is “GREAT for [me]”. I have no idea what my kidney numbers are, but I got blood drawn on Friday, so I’m hoping Josh delivers me numbers while I’m in Chemo today and that they are reflective of how good I feel for once. Last time it seemed like I tolerated the Chemo fine, but they did so much other horrible shit to me the days following and I was freaking out after having not slept for days, so it’s hard to parse out what I reacted to. Also, I was feeling so shitty I probably wouldn’t have been able to detect much of a decline. I worry that now that I feel better I’m going to perceive more adverse effects. I’m also worried that I’m going to get neutral/bad kidney numbers again. It concerns me that it’s been over a month and I feel relatively fine but I’m still so close to kidney failure. Especially because I’ve been dragging my feet a bit on this living donor transplant thing, so right now I don’t have a back-up plan ready.

I just haven’t been able to wrap my head around the kidney transplant thing yet.

I’ve taken a very One Step at a Time approach to this whole development and I haven’t gotten to the Find a New Kidney step yet. I think I’ve sorted out the Figure Out My New Diet step, and I’ve nearly wrapped up the Establish a Routine at Work step. This week is Find Out How Much Chemo Actually Sucks step. Next should probably be Find a New Kidney.

The main things bothering me now continue to be the pain in my legs from the extra weight and swelling, and mood swings and insomnia from the steroids. It still seems to me like my high blood pressure was the thing causing me the most grief, and now that that’s handled, I feel pretty good. My anemia is managed and my low kidney function is getting managed, and hopefully improving. I’ve taken for granted how much standing I need to do. I worked from home three days last week to rest and reduce exposure to office germs. I had planned to do what I did the week before and go into the office Tuesday, Thursday, Friday, but on Wednesday I ended up having to run to Walgreens to pick up some meds, which resulted in a very long standing in line situation. I also needed to make myself a bunch of food, which resulted in a lot of standing in the kitchen. By the end of Wednesday my legs were still really sore, especially my ankles. I woke up on Thursday really tired with a bit of a headache and decided going to the office was a bad idea and stayed home. The extra couple hours laying in bed instead of commuting to work helped and I was able to have a really productive and more restful workday — probably even more productive than I would have been in the office because I was free of distractions, which set me up for success on Friday. But it was disappointing to admit I needed to stay home because I had exhausted myself trying to meet basic needs the day before.

Friday was awesome though. I woke up with tons of energy, went to work, got through some important meetings, hit an important milestone with the team, and was able to go to the office holiday party! I made it through the whole party because I found a place to sit all night and packed myself some snacks. My legs were kiiiiiiiiilling me by the end of the night, but whatevs, they hurt everyday. Totes worth it.

Brittany came over on Saturday and we made kidney-friendly pizza using red pepper sauce instead of tomatoes! It was so fucking good. I miss pizza. Pizza’s tough because the dough and the cheese have a ton of protein and all of it has tons of secret salt and tomatoes are high in potassium, so basically if I don’t make it carefully myself it’s too dangerous. We’re gonna try again, maybe make our own dough and it’ll be super more friendly!

Brittany objects to this photo.


– – – Here’s where today’s earlier (re)writings were interrupted because Chemo was over, Josh hadn’t shown up and I had to go find him. Let me finish recapping the several previous days’ highlights for you now before we dig into the mess that was the rest of today and how I’m doing now in this moment. It’s important to remember the good times. 

I spent a lot of Sunday working. I knew I’d be out on Wednesday, and I wasn’t sure if Chemo was going to wipe me out for the week, so I took a lot of time to prepare things as best I could for a worst-case scenario so the team and the project doesn’t suffer (much) if I’m out for a prolonged period again. This is great because I actually did a TON of work and now will be able to focus on other work things for the next couple weeks and be able to pitch in and not be underwater. It’s a win win for a hard day’s work! 

Oh, also! During Saturday Night Insomnia I Googled “shoes pregnant women swollen feet” so Sunday I got up early and went to the Sketchers Outlet and found these sweet men’s extra wide memory foam boats for my cantaloupe-size feet! On clearance! I tried on the recommended pregnant women shoes–all impossibly narrow. But these guys! They’ve helped so much already. My feet were starting to get really fucked up from chafing issues and popped blood vessels from being shoved in my vans boat shoes (the only shoes I could still even get on at all) so I needed a more comfortable solution. And these are great! And not completely hideous–at least they’re a nice neutral gray. 

Marcie’s fat head for scale.


Monday I decided to go to work, even though I knew Tuesday was already a planned long day. My energy has been super good and I was losing weight, so I went for it. It was great! Jess and I ended up taking Bart, which was not great–especially the harsh reminder that GOING UP STAIRS IS REALLY FUCKING HARD RIGHT NOW. That drained a lot of energy I didn’t have first thing in the morning. Then I stood on Bart with a mask on. Apparently the mask and a general look of agony isn’t enough for anyone to offer me their seat, and I have not yet developed any selection process for awkwardly asking someone for their seat–so, suffering instead. I survived, then I did it again later to get home. 

Tuesday was the last hurrah! A long day of work followed by an outing for Elora’s birthday! I planned and packed back-up meals in case dinner was a kidney disaster (it wasn’t, so I ate that PBJ for lunch today instead). I rode the bus to work, which was fine. Except I sat next to a cougher, so I immediately pounded Emergen-C when I got to the office. Don’t worry, she was a considerate careful cougher and I made a point of holding my breath and not touching anything on that bus and feel fine today. I also find out today that my white blood count is totally back to normal so I’m not completely without an immune system, just suppressed still from steroids. 

ANYWAY work was good. Stressful, but I found a few good Pockets of Zen throughout the day to maintain balance, which is what is important. Dinner was lovely–not filling, but I had packed follow-up snacks which I annhilated much to Aja’s amusement during the intermission. The Lion King was AMAAAAAAAZING and totally worth how painful it was to sit in that chair unable to stretch out my legs. So, so happy I felt up to it and was able to have a fun night out with the ladies. ❤ 

Happy Birthday Elora!

I’m glad we recapped all that, I already feel a little better. Let’s chat about how the rest of today went after Chemo. 

So, for context, besides just generally being due to check in with Josh and wanting to ask him some questions, I also DESPERATELY needed to see him today because HR has been UP MY ASS for extremely explicit documentation regarding my ability to work for all the annoying HR-type reasons you can possibly imagine and things were going to get very ugly for me if I didn’t procure signed documents TODAY. (And let me say that our HR people are super nice and competent and have been very understanding and accommodating and just doing their jobs and I’m the villain here because I’ve been terrible because for one I’m just really bad at shit like this for some reason and always have been and also Josh runs his office like it’s 1993 and doesn’t use email and it’s easily the WORST thing about him, so everything just feels a little impossible.) So, I was pretty stressed out. I was also getting really exhausted. I also found out some important facts from my Chemo nurse today which I was not happy about:

  1. One of the featured drugs in today’s Chemo Cocktail is more steroids! Oh AWESOME JUST WHAT I NEED. 
  2. One of the major side effects of the drugs in my Chemo Cocktail is “extreme constipation”. This was news to me, and explains a lot about about a certain stretch of time in my hospital stay lemme tell you. Why won’t people tell me the side effects before they give me things when I ask?!
  3. One of the major components of my Chemo Cocktail is several liters of fluid. Necessary to protect my vital organs from the literal poison they’re injecting into my veins, but as someone experiencing serious fluid-retention issues responsible for my some of the most substantial quality of life downgrades I have right now, this conerned me. Fluid-rention issues that I thought I finally had under control because I lost ten pounds last week! It really concerned me when I felt my face get fatter than it was this morning as I was sitting in Chemo. It deeply concerned me when they weighed me at Josh’s office and it was like I hadn’t lost any weight at all and the accuracy of my home scale was called into question. And now that I’ve confimed my home scale is just fine and I did in fact gain back 8lbs today from chemo fluid that will probably take me at least a week to lose again I just want this day to be over. Fucking sausage legs. 

I did get one piece of really good news from my Chemo nurse though, which is I don’t have to be quarantined post-Chemo, so I can go right back to work if I feel up to. Which is awesome because there’s tons of holiday festivities at work this Friday and I’d be really sad to miss them! She’s also really confident I’m going to tolerate the Chemo fine and gave me some meds to manage side effects if I have any. So I feel good about that! 

Ok–so there’s the stress context for my Josh Hunt. Also, remember I’m exhausted and perpetually hungry. Here’s where things start to get really bumpy–buckle up! 

We go upstairs two floors to Josh’s office and, surprise, he’s not there. His office staff are helpful, tech savvy, and also pretty cute. They are my people. I get the impression they don’t like pretending it’s 1993 in there either. I explain my paperwork situation to them–emphasis on needing it TODAY, OR ELSE. We figure out how to fax documents from my iPhone to their office because THE FUTURE IS NOW and The Dream of the 90s is Alive in Josh’s Office. And just as this initiative is taking flight we hear the tell-tale sounds of Josh singing in the hallway.

“Hello!”

“Hey!”

“You’re here!” 

“YOU’RE here! I need you!”

What I find out later is that Dad ran down to the pharmacy to pick up my meds and ran into Josh and told him I was waiting for him in his office with no appointment. And even though Josh was already running late to something he rushed upstairs because he is the fucking best. 

“How are you feeling?”

“I’M GREAT! I’m faxing you annoying paperwork, I’m really sorry, but HR is going to murder me if you don’t fill it out.”

We did our check-up, I told him how great I’ve been feeling all week, how I’m finally shedding the water weight, how low my BP has been, how Chemo went and how good my blood numbers are, and that I’m really curious if my kidney numbers are finally improving with everything else. 

Well, they’re not. We looked at my lab report from the blood I gave Friday morning before work and they’re TERRIBLE.

My creatinine is over 4 — tanking my GFR to 12. W T F. 

Remember this is Friday morning — the day I was stressed as fuck at work, then was out all night at our office holiday party and basically felt totally fine besides leg pain. W T F kidneys?! 12% kidney function? Are you kidding? It’s been over a month of steroids and Chemo and this fuckin diet and 12% is where I’m at? WHY am I doing this? 

So, I launch into some questions I’d wanted to ask Josh today anyway. 

Would we have to finish this 6-month treatment plan I’m on before I can receive a transplant? 

No. If things continue this way we jump ship on Chemo and do the transplant as soon as the match goes through. Try to find a living donor sooner than later. In the meantime, we continue the Chemo because that + steroids + the plasma aphaeresis I had is still my best shot at avoiding dialysis if finding a match takes a long time.

Ok. What do we think caused this dip? Is there something I should be trying to pay attention to? What are we missing? 

It could be the increases to the meds — the diuretic and/or the blood pressure meds. It could also be related to BP being lower (W T F — damned if I do…). Let’s get more blood tested today and see if I’m stable from Friday or even worse (or magically better!) and make a plan from there. 

Ugh, I just had a fucking IV in there and could have gotten that so easily. UGH NEEDLES IN BOTH ELBOW PITS WHYYYYY. (It ended up fine. I ended up with the old Asian man again and he’s my favorite because he just goes for it on my tiny veins with the needles for small children and I don’t even hardly feel it. I love him. He had to take my blood twice in one day right before Halloween and made off-color vampire jokes. He’s great.) 

I made Josh really late to whatever thing he was already late for (meeting, not with another patient, so not much guilt on my part, haha, I mean he did forget to visit me, which he apologized for) but he filled out all my vitally important paperwork in exceptionally legible handwriting (which I complimented him on–“your lucky day!” he replied). He got a little cheeky. There was a lot of YES/NO boxes on these forms with regards to unpredictable questions, especially in light of my garbage numbers, so for the last one he created a MAYBE box to check instead then wrote “We hope not!” off to the side. Which is hilarious and really illustrates who I’m dealing with here. But I hope doesn’t get me in trouble with HR who gave me explicit direction to not be ambiguous in the responses, haha. Oh well. SORRY HR I JUST DON’T KNOW RIGHT NOW IF I’M GOING TO NEED MAJOR SURGERY AND WE’RE ALL JUST GONNA HAVE TO DEAL WITH THAT UNCERTAINTY TOGETHER OK?!

So then I got blood drawn and got to attempt to leave SF at precisely 3:30PM which is basically the worst time imaginable to try to leave the city, as it gets you deep into Oakland traffic at precisely 5PM which is also THE WORST. So we were in the car forever with my father who is no longer accustomed to rush hour traffic, let alone the Bay Area’s unique brand of total fucking idiot rain drivers. So yeah the drive home was a super relaxing cap to a shit time during which I tried not to start too heavily processing how much I hate my kidneys so I wouldn’t start crying and instead focused on things I can control–like work! 

And now I’ve basically done a merry-go-round of that all night. Where I know, in my head, I HAVE to start taking meaningful steps towards finding a kidney, but I know that the first step is dealing with the overwhelming panic I start to feel every time I try to start thinking about it in any real way and I really don’t want to but now I’m crying so I’m halfway there, this totally worked, I’m gonna go cry over my stupid fucking kidneys and hopefully fall asleep. It’s 1AM now I’ve been writing this for four straight hours my eyes probably won’t work very well tomorrow but I’ll be all cried out. 

Morning Update: I feel better but also like shit. Between crying and water weight my face is massive and puffy again and I’m torn between wanting to wallow in self-pity in bed and wanting to get the fuck up and go to work where I’ll at least feel good about myself. I think work is going to win–if I get too tired, or start feeling bad, I’ll leave early and come home to wallow. 

Marcie is the best. She’s not accustomed my hysterical sobbing and decided the best thing she could do last night is come over and rest her head on my chest. She’s still on top of me now. 

Ok, time to get up. 

18
Nov
16

I’M CLEAN!!!

Good fortune rains upon me today!

Yesterday was really hard, but it wasn’t all bad. Besides feeling shrink wrapped by own skin, I felt ok. My plasma treatment went smoothly, I took a nap, and I didn’t have to get a blood transfusion. I started taking an iron supplement and haven’t suffered any fallout from that yet, and they’ve put me on a diuretic to help with this excess fluid making me all puffy.

Aja and Viv came by after work last night and gave me lots of hugs, which I needed. They also brought crafting supplies from the office so we could add our hand-turkeys to the Jam City Farm. It was difficult with my shaky hands, but therapeutic, I think. It also wore me out, so I slept pretty good last night — 11PM-4AM.

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gobble gobble googly eyes

I woke up feeling good again this morning, but tempered expectations after that news from yesterday. No need!

Numbers are back on track today!

Creatinine is back down to 3.3 and hemoglobin is finally trending upwards, so my body is starting to make blood again. Progress is still very slow, but at least it’s in the right direction again. And that’s not even the best news!

First thing this morning, I received two packages!

I’ve been receiving care packages from friends and family since everyone found out, not to mention a fairly steady stream of fresh flowers. (Everyone in the hospital loves you guys for making my room smell so good all the time!)

I won the nurse lottery today!

Bea, who is usually one of the charge nurses (= IN CHARGE), was assigned to be my primary afternoon nurse today. She’s an older Russian woman and she knows what’s up. According to the staff wall, she’s the most experienced on the floor. I’ve seen Bea a lot since I moved up to the sixth floor last week and she’s always been super helpful, but she really took care of me today.

First of all, she’s got my drug schedule down — she knows I like to take my antacid first thing before breakfast gets here, then she gives me whatever I need to take in the morning after breakfast, then gives the rest of my dailies with lunch so I don’t have to take all 20 pills at once. Super nice.

After days and days of everyone saying I wasn’t going to be able to take a shower with my central line in, Bea today is like let’s wrap that thing up and get you a shower! O M G! Jess immediately brought over some real shower stuff for me because she is The Best Sister Ever and after I finished breakfast, Bea wrapped up my neck, found me a chair for my shower and

I had the greatest shower of all time!

It was actually a weird shower. I had a hard time negotiating the tiny shower with that chair in there and banged myself up pretty good (thanks for the bruises, anemia), plus I was pretty worried about getting water under my bandages, and I couldn’t use water that was too hot (thanks, anemia). BUT I’M CLEAN NOW. I’VE EXFOLIATED. I FEEL AMAZING. I took my time and washed everything like five times. It was glorious. While I was in there they refreshed my bed linens too, so everything is clean.

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I’m clean!

Afterwards, Bea completely redid the dressing on my neck and it feels a lot better. My neck is still pretty much covered in old adhesive, so I’m looking forward to washing that eventually, haha.

One of the only channels I get in here is having a Harry Potter marathon all weekend. Mom’s never seen them, so we’re having fun with that today.

After lunch today, Mom and I went outside for some fresh air. It’s super nice out today, not freezing like last time, so we did a few laps around the terrance in the sun. Definitely the most I’ve moved around since I got here, it’s been an active day. I’m pretty tired now, so I might take a nap before I start having visitors. Brittany’s coming by later, and I’ve gotten some other offers for visitors as well. I have a bunch of people coming by tomorrow — including Alex who is flying up from LA and staying until Sunday!

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I’m back on top! Makin some of my own blood again and still functioning pretty good with bum kidneys!

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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