Posts Tagged ‘chemo

29
May
17

24 Days

24 Days to my Kidney Transplant Surgery!

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Sorry for the radio silence, but there hasn’t been much to report besides the agonizing wait we’ve been enduring to find out if TK can be my donor during which my condition has continued to slowly deteriorate. Nevertheless, let’s recap what the last couple months have been like.

J and I attended that orientation for dialysis I mentioned when it started to seem like that would be a necessity. We spent a couple hours with a guy old enough to be my dad and a guy old enough to be his dad learning the basics of dialysis I had already taught myself from the internet. What we found out was the timelines for getting on dialysis didn’t really jive with our transplant plans — it takes several weeks to get all the shit together you need to do dialysis if it’s not an emergency. By the time I would have gotten dialysis sorted out, I would have had a new kidney. So, instead, I’ve been “toughing it out”. Seems like I dodged a bullet.

It’s been pretty difficult. Every time I start feeling extra bad I panic that I’ve hit the tipping point and worry I’m going to wind up back in the hospital for weeks. It’s completely insane that I’m still so high-functioning with the shape my body is in right now. All of my important labs have been hovering around the magical number 7, which is kinda funny, but also terrible considering these numbers aren’t supposed to be anywhere near each other.

My GFR, creatinine, and hemoglobin are all hovering around 7.

My GFR would be great if it was anywhere over 50.
Creatinine is supposed to be less than 1.
Hemoglobin should be over 11.

You can see how this is very bad.

Most people are forced onto dialysis with their creatine dips down to 8, they start dying without dialysis when it gets to 6. Most people have to get a blood transfusion when their hemoglobin is less than 10. Mine’s been less than 10 for six months, but a blood transfusion will complicate my transplant so instead I’m just kind of dizzy all the time. My left side constantly hurts, sometimes worse than other times. And I’m so, so tired. But besides that, I don’t feel too rough. A few weeks ago I was feeling really bad for a few days and it seemed like dialysis on the horizon for sure, but then we figured out we didn’t taper my calcium supplements when we tapered my steroids and I was just poisoning myself with calcium. I stopped taking that and felt a lot better. I’m on my last few days of steroids, finally. When I got down to 8mg I started feeling like myself again, mentally. Around 5mg I got my face back, almost. I can tell you that the side effects of chemo and steroids made me feel worse than this kidney failure is making me feel. Nothing’s making me feel as bad as the hypertension was making me feel.

I’m still working full-time, but that’s been getting harder. I haven’t been able to do a full week in the office in weeks, requiring at least one day working from home to rest. Luckily, my company continues to be really awesome and accommodating of that. I spend most of my weekends on the couch, resting, but I try to at least go out for breakfast or see friends when I’m feeling up to it. I’ve been watching a lot of tv.

TK had to go through a whole mess of unpleasantness to find out if she could give me her kidney. And we still have the entire major surgery and weeks of recovery to look forward to! I actually have a ton to look forward to, most of which is food, but also not being tired, dizzy, and in pain all the time. Also, whiskey. And did I mention food? I guess I’ll probably still be in pain for a while, it’ll just be different. And I’ll be allowed to take pain killers again because I’ll have a kidney that works. I’m trying not think too specifically about the actual surgery. J and I were talking about it for a few minutes last night and I nearly fainted, haha. This is one of very few situations where I don’t really want to know how something works or what’s going to happen, I just want it to be over.

Unfortunately, things won’t really be over once the transplant is done. Because an autoimmune disorder is what caused by kidney failure, I’ll still have chronic kidney disease and an autoimmune disorder. It’s possible the same thing that happened to my kidneys could happen to my new kidney. The best I can do is be kind to my kidney and try to catch it earlier this time. Because I’m getting a living donor kidney from a relative, the chances of rejection are lower and I should be able to get a good 15 years out of it, at least. Science, you have 15 years to master 3d printing kidneys–chop chop!

Here’s some weird photos of how things have developed. 

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07
Mar
17

chemo nomo 

I was supposed to have my next chemo treatment today, but I’ve been spared that unpleasantness. We’ve canceled my remaining chemo. It isn’t working. 

Josh called late yesterday to see how I’m feeling. He got my most recent lab results. My creatinine is over 5. My GFR is down to 9. If it gets much lower I’ll have to go on dialysis until we find me a kidney. I’m getting new labs tomorrow to see where we’re at. 

I feel the same–relatively “fine”. My sides/back hurt often, sometimes a lot. I always have a bad taste in my mouth from the wastes my kidneys aren’t filtering. My edema hasn’t gotten any worse. My anemia’s doing its thing. My blood pressure is totally under control. My prednisone dosage is down to 10mg, in a couple weeks we’ll taper it down to 5mg and I’ll hopefully get my face back. 

J is still getting tested to be a donor. We found out today that the tissue typing came back with half our markers matching, which makes sense since we’re half sisters. Next is the cross-match test where we see if my blood tries to attack J’s blood. J’s still undergoing her physical to make sure she’s in tip top shape, but so far so good. 

There doesn’t seem to be much I can do besides continue my diet and stay hydrated and vigilant for worsening symptoms. 

Maybe now my leg hair will grow back. 

J and I watched an ep where Blanche’s sister needed her kidney.

02
Jan
17

Research Mode

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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. 

02
Dec
16

I had a very busy day yesterday!

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

ANYWAY

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

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

The awesome party I imagine in my urine specimen.

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

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

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

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

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

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

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

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

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

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

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

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

28
Nov
16

IT IS VERY IMPORTANT FOR EVERYONE TO KNOW THAT UNCLE BILL & HELEN CAME TO VISIT AND NOW I AM FEELING A LOT BETTER! ❤

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Uncle Bill = Dad + Grandpa + Awesome

“Better” is pretty relative. I’m dealing with a lot of side effects from these steroids that are very unpleasant. From my perspective, if I wasn’t on these steroids, I would feel pretty fine. But since the steroids are the thing keeping my kidneys functioning at all, I guess we can’t really say that. Soooo here we are. Insomnia, mood swings, 25 extra lbs of water weight putting strain on my muscles and joints, and working-for-now kidneys. I think the anemia is getting better — I’m able to carry jugs of juice from the fridge to the counter again without feeling like I might collapse! I’ve more or less got my diet figured out — it’s still an adjustment, but I’m making progress. The salt limit is definitely the tricky one, just because it’s so low. My overall mental state is improving — extreme mood swings and general irritability from the steroids notwithstanding.

To keep my legs more usable, I’ve started keeping them elevated as much as possible. I elevate them when I sleep and I keep them up all day long while I’m working/hanging out. They’re still sausage legs but at least I can walk on them. The skin is still too tight, especially behind my knees, but it’s not total fucking agony. The tradeoff is more of my water weight is sitting in my waist, back, chest, and face causing more pain there. I’ve decided to think of this as me turning into Santa Clause just in time for the holidays! I hit what I hope is peak chubalicious on Saturday morning.

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Ho ho ho amirite?

I’m trying to return to some normalcy this week — part of which is resuming a full work schedule. I know I’m not physically capable of doing a full week in the office with this weight being so susceptible to the whims of gravity, so I’m trying to work from home a couple days and go into the office a couple days and see how it goes. I’ll have a much better idea of what my real limits are after trying to spend a day working in the office tomorrow. I worked very effectively, I think, from home today, but if I don’t get out of this house I’m going to lose my goddamn mind. I’ve already planned to stay home Wednesday, assuming my legs will probably need the day off and if I’m in rough shape from overdoing it, I’ll take a full sick day to recover. Don’t worry everyone!

I’m seeing Josh first thing Thursday morning — hopefully getting a bit more clarity on my prognosis and finding out what the tapering schedule is for these fucking steroids. Also going to take his temperature (heh) on consulting an acupuncturist.

I’m due for my next chemo treatment next week, but I’m trying to get it moved to the week following. I have a lot of shit going on next week that makes blowing up my blood levels again really inconvenient to say the least, but so far I haven’t been successful calling a number to get to a human who can move an appointment on a calendar, so we’ll see how that goes. Wish me luck!

 

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!




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