Posts Tagged ‘low-protein diet

04
Dec
16

After several days of really bad insomnia leaving me really strung out feeling yesterday, I finally got what felt like actual sleep last night. THANK GOD.

I drove my car today! I ran a bunch of errands and prepared all my own meals!

My ankles are fucking wrecked.

I was on my feet a ton today and they are massive. Elevated for the rest of the night, and tomorrow. I cleaned out the fridge, tidied up a bit around the house, did some Christmas shopping, picked up a few items for myself to get through these extra husky weeks I’m having, and spent a lot of time analyzing food labels and picking up some low-sodium/protein snack options for work.

There was something very weird about trying on clothes that I hope don’t really fit in a couple months. I realize this a normal thing tons of people do, but I’ve never targeted a different weight before, so it’s a new experience for me. It’s also weird to try on clothes when your sausage legs are full of water and will, to a degree, take on the shape of whatever vessel they’re in. Seriously, they’re so squishy and weird. It’s super disturbing. But I needed one more pair of pants I can wear to work–mission accomplished. I hope that’s the closest to a dressing room breakdown I ever get.

I’ve made some observations.

  1. There is a lot available for people looking to cut out sodium, but you have to look pretty intensely for it and always pay more. It’s roughly 3x more to get a can of tuna without salt added, for example. I hate our food system. My sodium limit is not much less than the suggested daily for an average person. People are killing themselves with all this extra salt they’re not even aware of.
  2. I pretty much don’t need to worry about my potassium limit so long as I’m not eating bananas, avocados, or tomatoes. My protein and salt limits take care of the rest anyway. All the delicious high-potassium preparations of potatoes are too salty for me to enjoy. This is a relief because potassium is hardly ever listed, making it really hard to track on the fly. So long as I stay away from large quantities of danger items and pay attention to salt and protein, my kidney diet will be fine.
  3. Items that are gluten-free, unless marked as ‘good source of protein’, are generally a nice shortcut, as long as they don’t have a ton of potassium or salt. A lot of the stuff that gets removed to make something gluten-free also makes it lower in protein, unless they’re trying to compensate for that in particular.
  4. I was definitely eating a ton of protein as a vegetarian. Anyone who ever gave me crap for the last ten years about getting enough protein on my diet can retroactively STFU and probably leave the other vegetarians they know alone, too.
  5. Calcium is interesting. I’m on a lot of calcium supplements because the steroids are bad for my bones. I think I’m starting to notice when I go too long between supplements throughout the day. I’m digging into it. Calcium absorption is apparently very complicated.

M&D are in LA for the next week and a half, so J and I are on our own. I plan to do the same wfh/office split this week, to manage my water-retention gravity-hates-me problems. Despite being super active today, I still have a lot of energy, which is great! My body is just wrecked — my ankles/feet are killing me from all the standing/walking. I made the HUGE mistake of picking up Rosie yesterday morning and now my arms are wrecked, haha. Gonna take a while to build my strength back up I guess, whoops. Here’s hoping I get more sleep tonight.

 

 

 

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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…

22
Nov
16

Home but not better.

I AM HOME FROM THE HOSPITAL!

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Back home with my Top Nurse and not wearing hospital clothes!

It’s a little misleading. In a lot of ways, I’m in worse shape now than I was when I got to the hospital — my immune system is shot and I’m even more anemic. There’s an open wound in my neck. I’m still retaining a lot of water and feel and look like a sausage.

I’m currently adjusting to the reality that I am living with stage four kidney disease, and will be for the foreseeable future until things either get better or worse.

I have to limit my potassium.

I have to limit my protein.

I have to limit my sodium.

I have to monitor my anemia and continue taking iron supplements and hormone injections.

I have to monitor my high blood pressure and continue taking medication.

I have to be slowly weened off of steroids for the next six months.

I have to take a bunch of medications to counter the negative effects of steroids.

I’m probably going to have to get more chemo, which will make me more anemic again and decimate my immune system, again. Plus risk of infertility, plus risk of hair loss.

I have to take extra care to not contract any infections that could set off my immune system and throw my kidneys into crisis.

I have to keep in tip top health so that I am a good donor recipient.

I have been encouraged to find a living donor match so that I have a plan in place should I find myself desperately needing a new kidney so I can hopefully avoid dialysis.

There’s a still a chance I will be able repair my kidneys and regain more kidney function. This will take a very long time.

I am making plans.

Yesterday was a really weird day. I started the morning with my favorite nurse telling me she had completed my discharge paperwork should the doctors decide to let me out. I resisted hope. My numbers were stable — hemoglobin up to 6! Kidney numbers still the same. My last scheduled plasma treatment started relatively on time and went fine, except that the steroids made my entire body hum for two hours which was super unpleasant. Josh and my internist delivered the news that we wouldn’t be doing anymore plasma treatments and I was allowed to go home if I wanted to. They didn’t actually say, “Well, there’s nothing else we can do for you,” but that’s what I heard. Well, let’s get me the fuck out of here then.

We spoke at length in fairly vague terms about what my next six months – forever look like. I got randomized a new attending that had to meet me for the first time then coordinate all my discharge stuff–this took ALL. FUCKING. DAY. A representative from the living donor transplant program paid me a visit and gave me a pamphlet. A dietician brought me three lists of foods I can’t eat. Then I spent several hours waiting for someone qualified to remove the central line from my neck so I could go home. This was agony — not the removal, just the wait. Phil, my nurse (poor Phil, who only gets me on my worst days–Iron Treatment #1 and then yesterday), cold called the entire hospital all afternoon I think until they finally sent someone up around 6:30. It took less than 5 minutes to pull this thing out of neck and then Phil had to hold a compress on it for a full half hour so I wouldn’t bleed out (success!). Phil also ran down to Walgreens and picked up all my meds for me. Then I had to get a flu vaccine and a pneumonia vaccine (these both still strike me as something very risky to do). THEN. THEN I had to wait for the goddamn pharmacy to send up my hormone injection. The universe decided it was a great time for my period to start. We didn’t leave the hospital until 8:30.

Mom and Jess spent the better part of their day hanging out in my hospital room waiting with me while I basically sat catatonic on my bed trying to process everything that is happening to me. I was not fun to be around. I’m still not very fun to be around yet.

But! I’m working on it. I have a lot to figure out and I love figuring things out. I was up all night trying to figure three things out:

  1. How do I get my kidneys to work again?
    1. I’m going to build some tools to hack my diet and monitor all the things. Everything available in the app store is garbage I think, so I’m going to build my own system in Google Sheets.
    2. I’m going to consult some more “alternative” medicine. I fully submitted myself to western medical establishment for two months and have found it wanting.
    3. I’m otherwise perfectly healthy, so I’m going to keep doing what I’ve been doing for the most part, with a few lifestyle adjustments.
  2. How do I get back to work?
    1. This has less to do with work and more to do with me getting back to something that I love.
    2. Actual work is the easy part. I’m very good at my job and my work is not strenuous. Work needs my brain and my brain is still great.
    3. My immune system is a problem. My office and the means of getting there are both kidney death traps. I’m cultivating a “Bubble D” persona. I will resist my polite impulses to hold doors open for people — the more door knobs I can avoid, the better.
    4. I have to stay hydrated.
    5. I have to not schedule three stressful hour long meetings back to back. I will carve out mandatory rest time in quiet corners of the office for myself throughout the day.
    6. I will figure out my long-term treatment schedule and all of the logistics around that as soon as I can.
  3. How do we stop the nazis?
    1. I can’t believe this is a very real concern.
    2. I don’t even know where to start with this right now, but there’s no time to lose.

Tomorrow I have a follow-up appointment with my oncologist and I have to schedule a follow-up with Josh for next week. Tomorrow I get to take a shower and change the bandage on my central line wound. Tania and the boys are coming for Thanksgiving tomorrow. I’m working to be out of my processing funk by then. I’ve spent most of today catching up on work and it’s been wonderful.




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