Posts Tagged ‘kidney diet

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.

 

 

 

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.

 

 

 

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…




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