Posts Tagged ‘high blood pressure

10
Feb
17

Whoops

Of course right after I report things are stable and boring stuff starts careening off a cliff on me.

So a couple weeks ago, Josh decided to change up my BP meds. We didn’t really discuss why. Since we made that adjustment I haven’t been feeling super great — my legs have been extremely weak, like more so than I when I was in the hospital and barely using them. My knees and ankles have  been killing me even more than usual, even though I haven’t been putting any extra stress on them. I’ve been really, really tired. Physically tired. Like, exhausted walking a few blocks tired. It’s been rough. I’ve also been getting headaches again — not as bad at the migraines, but they kept me up for two nights this week.

I blamed the switch on the BP meds–check this ridiculous list of side effects. I’ve bolded everything I’ve been feeling, even though 90% is also just symptoms/side effects of kidney disease/anemia/steroids/stress.

More common:

  • blurred vision
  • cloudy urine
  • confusion
  • decrease in urine output or decrease in urine-concentrating ability
  • dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
  • sweating
  • unusual tiredness or weakness

Less Common:

  • abdominal or stomach pain
  • body aches or pain
  • chest pain
  • chills
  • common cold
  • cough
  • diarrhea
  • difficulty breathing
  • ear congestion
  • fever
  • headache
  • loss of voice
  • nasal congestion
  • nausea
  • runny nose
  • sneezing
  • sore throat
  • vomiting

Rare

  • Arm, back, or jaw pain
  • chest discomfort, tightness, or heaviness
  • fast or irregular heartbeat
  • general feeling of discomfort or illness
  • joint pain
  • loss of appetite
  • muscle aches and pains
  • shivering
  • trouble sleeping

Minor Side Effects
Less common:

  • lack or loss of strength
  • loss in sexual ability, desire, drive, or performance
  • rash

Rare

  • Acid or sour stomach
  • belching
  • burning, crawling, itching, numbness, prickling, “pins and needles”, or tingling feelings
  • feeling of constant movement of self or surroundings
  • heartburn
  • indigestion
  • muscle cramps
  • sensation of spinning
  • stomach discomfort or upset
  • swelling

I thought it a little ridiculous that while I’m in Josh’s office complaining of bronchitis and coughing all over the place, he prescribes me a drug whose side effects include fucking coughing. I could have been coughing forever! Also, this med is super not recommended for people with kidney problems (which is why we took me off of it in the first place, I thought, back in November!).

So, anyway, I’ve been feeling like shit the last week or so. But then I went for chemo this week and got my blood levels and I’m hella anemic again — hemoglobin down to 8. Nurses started using words like “blood transfusion” again. So that explains the bruising and the increased fatigue at least. I have ideas around why I’m suddenly more anemic and I think I can solve it with some favorable adjustments to my diet — we’ll experiment with that next week. They also went ahead and gave me that injection to boost my blood-making hormones again, so that should help me feel better sooner, too.

But then, the last two days my blood pressure has spiked up to like 150/110 and wasn’t coming down. I was lying awake in bed with a terrible headache unable to sleep for two nights and my blood pressure was through the roof for no reason. This morning it was climbing even higher so I made the executive decision to switch back to my other meds and called Josh’s office to leave a message.

Today’s the worst I’ve felt at work since I’ve been full-time back from the hospital. I ended up leaving a couple hours early because I was having a hard time focusing and really just started getting a little panicked and paranoid about what could be causing this spike in my blood pressure, which I’m sure wasn’t helping.

I’ve been at home decompressing for a couple hours and it’s still elevated, but I just got off the phone with Josh and it sounds like we had a miscommunication regarding my dosage which may explain this trend and we’ve made a new adjustment based on how not interested I am in being on that one with so many ridiculous side effects. Hopefully we can get my BP back down to a comfortable 130/80 again with our new plan.

TGIF

PS Here’s the listed side effects for the two BP meds I’m staying on, ha:

Labetalol

  • blurred vision or other changes in vision
  • chills
  • cold sweats
  • confusion
  • difficult or labored breathing
  • dizziness, faintness, or lightheadedness
  • shortness of breath
  • swelling of face, fingers, feet, or lower legs
  • tightness in chest
  • wheezing

Symptoms of overdose:

  • chest pain or discomfort
  • lightheadedness, dizziness, or fainting
  • slow or irregular heartbeat
  • sweating
  • unusual tiredness or weakness

Minor Side Effects

  • nausea
  • acid or sour stomach
  • belching
  • change in taste or bad, unusual, or unpleasant (after) taste
  • feeling of constant movement of self or surroundings
  • headache
  • heartburn
  • indigestion
  • lack or loss of strength
  • loss in sexual ability, desire, drive, or performance
  • rash
  • sensation of spinning
  • stomach discomfort, upset, or pain
  • stuffy nose
  • burning, crawling, itching, numbness, prickling, “pins and needles”, or tingling feelings
  • diarrhea
  • increased sweating
  • vomiting

Sounds fun, right?

Amlodipine

  • swelling of the ankles or feet
  • difficult or labored breathing
  • dizziness
  • fast, irregular, pounding, or racing heartbeat or pulse
  • feeling of warmth
  • redness of the face, neck, arms, and occasionally, upper chest
  • shortness of breath
  • tightness in the chest
  • wheezing
  • black, tarry stools
  • bleeding gums
  • blistering, peeling, or loosening of the skin
  • blood in the urine or stools
  • blurred vision
  • burning, crawling, itching, numbness, prickling, “pins and needles”, or tingling feelings
  • chest pain or discomfort
  • chills
  • cold and clammy skin
  • cold sweats
  • confusion
  • dark yellow urine
  • cough
  • diarrhea
  • dilated neck veins
  • dizziness or lightheadedness when getting up from a lying or sitting position
  • extra heartbeats
  • extreme fatigue
  • fainting
  • fever
  • itching of the skin
  • joint or muscle pain
  • large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
  • numbness and tingling of the face, fingers, or toes
  • pain in the arms, legs, or lower back, especially pain in the calves or heels upon exertion
  • painful or difficult urination
  • pale, bluish-colored, or cold hands or feet
  • pinpoint red or purple spots on the skin
  • red, irritated eyes
  • redness of the face, neck, arms, and occasionally, upper chest
  • redness, soreness or itching skin
  • shakiness in the legs, arms, hands, or feet
  • slow or irregular heartbeat
  • sore throat
  • sores, ulcers, or white spots on the lips or in the mouth
  • sweating
  • swelling of the face, fingers, feet, or lower legs
  • swollen glands
  • trembling or shaking of the hands or feet
  • unsteadiness or awkwardness
  • unusual bleeding or bruising
  • unusual tiredness or weakness
  • weak or absent pulses in the legs
  • weakness in the arms, hands, legs, or feet
  • weight gain
  • yellow eyes or skin
  • acid or sour stomach
  • belching
  • heartburn
  • indigestion
  • lack or loss of strength
  • muscle cramps
  • sleepiness or unusual drowsiness
  • stomach discomfort, upset, or pain
  • abnormal dreams
  • anxiety
  • back pain
  • bad unusual or unpleasant (after) taste
  • bleeding gums
  • blistering, crusting, irritation, itching, or reddening of the skin
  • bloating
  • bloody nose
  • burning feeling in the chest or stomach
  • burning while urinating
  • burning, dry, or itching eyes
  • change in color of the treated skin
  • change in sense of smell
  • change in taste
  • changes in vision
  • constipation
  • continuing ringing or buzzing or other unexplained noise in the ears
  • cracked, dry, or scaly skin
  • decreased sexual performance or desire
  • depression
  • difficulty with moving
  • difficulty with swallowing
  • discharge, excessive tearing
  • double vision
  • dry mouth
  • dryness of the skin
  • excess air or gas in the stomach or intestines
  • excessive muscle tone
  • eye pain
  • feeling of constant movement of self or surroundings
  • feeling of unreality
  • feeling unusually cold
  • flushed, dry skin
  • fruit-like breath odor
  • full feeling
  • general feeling of discomfort or illness
  • hair loss or thinning of the hair
  • headache, severe and throbbing
  • hearing loss
  • hyperventilation
  • increased appetite
  • increased hunger
  • increased sweating
  • increased thirst
  • increased urge to urinate during the night
  • increased urination
  • irritability
  • irritation in the mouth
  • lack of feeling or emotion
  • loose stools
  • loss of memory
  • muscle pains or stiffness
  • muscle tension or tightness
  • muscle weakness
  • nervousness
  • pain
  • pains in the stomach, side, or abdomen, possibly radiating to the back
  • passing gas
  • problems with memory
  • redness and swelling of the gums
  • redness, pain, or swelling of the eye, eyelid, or inner lining of the eyelid
  • restlessness
  • runny nose
  • seeing double
  • sensation of spinning
  • sense of detachment from self or body
  • shakiness and unsteady walk
  • shivering
  • sleeplessness
  • sneezing
  • stuffy nose
  • sweating
  • swollen joints
  • tenderness in the stomach area
  • thirst
  • trouble in holding or releasing urine
  • trouble sleeping
  • twitching
  • unable to sleep
  • uncaring
  • unexplained weight loss
  • unsteadiness, trembling, or other problems with muscle control or coordination
  • waking to urinate at night
  • weight loss

Oh look, a list of things a human might feel. 

I have to get off of these meds.

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05
Feb
17

There hasn’t been much to report lately — things are pretty stable.

I oscillate between depressed, totally fine, and a little manic every few days. I’m in constant but manageable pain; my knees and ankles, other joints, my left flank, my face. I’m tired pretty much all the time, but rarely to the point that I can’t get out of bed, so I power through. I’ve had bronchitis for two weeks and the coughing has a caused a constant soreness in my ribs and chest.

My main kidney numbers still aren’t getting any better — my creatinine has been going up, it hovers around 2.5 – 4 which is where it was before I checked into the hospital three months ago. Despite that, my GFR is holding steady at around 12-14. I’ve been picking up more subtle symptoms of kidney failure, like bad breath caused by waste build up in my body and cramps in my legs and hands. It’s a total blast. Josh says my other numbers are showing improvement though. My potassium and phosphorous levels are good and my protein filtration is better. I asked if that’s just because I’m limiting stuff in my diet, but he assures me it’s indicative of my kidney function improving. Either way, despite my borderline numbers it sounds like I’m still aways from needing dialysis, so that’s good.

I was supposed to have my transplant evaluation a couple weeks ago, but I had to postpone it because my insurance didn’t approve it in time. The next available slot isn’t until the end of February, which I’m scheduled for and has been approved and I’ve done my blood test for already. Once that’s done, we can start screening potential kidney donors for me. I have some very generous volunteers lined up. No one has anything positive to say about their experience trying to get a kidney transplant. Mine is already not off to a great start. I’d like to get it out of the way before Trump fucks up our healthcare system even more.

img_1278

Proof!

My blood pressure is still a little high — 135/90 most of the time. We’ve switched up my meds again; off a beta blocker and back to an ACE inhibitor, but I think it’s making me feel worse so I’m going to talk to Josh about it. Still on the calcium channel blocker. Still on antibiotics. Still taking tons of calcium supplements, vitamin d, and iron. Still on the prednisone, but we’ve tapered my dosage to half what it was when I left the hospital, and I get to taper it to even less over the next month, so maybe I’ll get my face and sunny disposition back soon. I am a little concerned that the boost from the steroids is what’s kept me going the last few weeks and without them I’ll be too tired, but that’s not worth these side effects.

Now that I’ve successfully hacked my diet (seriously, someone in kidney failure should not be eating meat or dairy — it’s really fucking simple, and I can’t believe no one said that) things are better. Sausage D doesn’t happen very often anymore; I keep my feet up as often as possible, so I can wear my normal shoes again. Last time I had chemo I only gained 6 lbs from the fluids and it only took me a few days to lose it. I have chemo again this week, hopefully it goes about the same way.

I’m not too sure what’s up with my anemia. My numbers were trending well, but they dipped a bit last week and right now I am covered in bruises and I’ve been really tired. I’ll get more tests at chemo this week, so I guess we’ll see where things are.

Besides being tired and in pain and my face being totally swollen all the time, I’m basically fine I guess. Work is going to stop being so crazy now that it’s not January anymore, so hopefully I can spend some time looking into alternative treatments to manage my symptoms. I also really need to make an eye appointment because my eyes are fucked up and I don’t know if it’s because of the meds or just strain or both, but I feel like I’m going blind half the time and it’s hurting my head. I’ve been trying to exercise more — walking around, taking the stairs a bit, but it really wears me out and hurts my legs, so I’m not sure what to do about that. I had to jog about half a block to catch my bus home the other day and my legs were really close to collapsing under me. But, my heart felt good!

I’m over this you guys.

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. 

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!

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.

20
Nov
16

Ain’t no party like a hospital party!

I’ve had a good weekend! I had hella in-and-out-of-town visitors all weekend long; the peak of which was when Alex, Brittany, Aja, Elora, Bubs, and Rudy were all here Saturday night chillin like hanging out in a hospital room is a totally normal thing to do. It was awesome! Only thing missing was some beerz and my ability to stay awake past 11PM.

I have the best friends. ❤ ❤ ❤

 

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Marla and Geoff also drove up from LA this weekend to visit with me both days and Amanda came by for a few hours today. Alex slept over last night giving Mom and Jess a much needed break I’m sure.

My kidney numbers still aren’t great, but I’m making blood again and everyone’s less worried about me needing a transfusion. The nurses were understaffed all weekend, but I’m low-maintenance and had a lot of supervision all weekend anyway. My BP has been a little elevated the last few days, but I don’t know if that’s because of my kidneys, or when they take it, or me needing more adjustments to my meds. I’m still pretty puffy in weird places from steroids, which is bothersome.

My A-Team of doctors is back tomorrow, so I guess they’ll all talk and decide what my plan is. As of now, I have my last scheduled plasma aphaeresis tomorrow and then…? Obviously, I  would like to not live in the hospital anymore, but I’m still pretty close to kidney failure, extremely anemic, and my hemoglobin is still exceptionally low, so I’m just not sure sending me home right now is responsible. We’ll find out!

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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