Potassium is supposed to be the lab value that dialysis patients don't have to worry about. Well, apparently that's wrong because I just finished three doses of Resenium (spelling, will correct later) over 6 hours to bring my potassium levels down. I also got to take Lactulose along with it. If you don't know, Lactulose is a laxative.
I have never spent so much time in my bathroom.
I have never had a problem with constipation, so I'm ticked that my doctor prescribed it, and I didn't really think of it until after I'd chugged the first dose.
It's 2:00am. I finished the last dosage around 1am. Apparently doctors/clinics don't think patients have lives or jobs when giving these orders. I have to be up in 5 hours to teach, then I have a 2 hour meeting.. Yeah, it's going to be a stellar day today.
2013-11-15
2013-11-14
That damn phosphorus
I know! It has been way too long since I have written. A little writer's block, a lot of work (3 jobs, the countdown is on to my 3 weeks off at Christmas!!), and really nothing much going on.
That all changed this weekend when I started noticing lower calf muscle pain. My first thought was "how much can i keep from my doctor?" (I am a good patient, but not a great patient, especially diet wise. I have unresolved food issues. I'm currently in therapy, so we'll see how that goes. TMI? OK, moving along. :)
I also thought it was maybe because I hadn't exercised in a week--snow is not my friend. I ordered an exercise bike, so figured the 10 days waiting for that would be OK. Not so, young grasshopper! Not so. So I've re-added walking to my evening schedule (yes, you're right, the snow has melted).
Here's the main thing that I noticed happening: if I sat for long periods of time, my legs would be weak/shaky and painful, and I felt like I would have to restart myself--moving was at first painful. After walking for a couple of minutes, I was fine. Moving at regular speed (lightspeed) and with little to no pain. However, once I sat again, the whole process would restart. Since one of my jobs is sedentary, I took two days off to keep myself out of that environment and I was able to be at home and up and moving around a lot. Sit, read for 20 minutes, walk around the house, repeat. Not a bad couple of days off, but a little scary while waiting for the phosphorus to flush out.
The culprit? I should've known right away--yeah, too much phosphorus in my blood, along with some slight malnutrition due to not enough protein. UGH. Ladies & gentlemen, the balance between protein, calcium, phosphorus, etc is a FINE LINE to tread.
So, I started looking up information for low phosphorus foods. What I really wanted were some numbers I could understand. I never felt like I got that from my clinic. I was pretty honest with them
when I told them I ate sunflower seeds (which I knew were high in phosphorus). What the clinic
failed to tell me was HOW HIGH.
Yesterday I found this fantastic website that breaks down pretty much ALL foods into ALL their components. So off I stumble to check out foods I eat regularly: bacon, asparagus (high, but acceptable), sticky rice, various other veggies and meals. Then I very hesitatingly looked up sunflower seeds. Because once you have the information you need, you have to do something with it, like change. And while I've been changing my diet over the past few months and exercising more, I haven't given up sunflower seeds. It's been a bit of an addiction. Not good. And no more.
Let me explain the ideal daily amount of phosphorus allowed a dialysis patient who struggles with phosphorus--some of you lucky buggers don't have this problem. I am jealous as I love foods with phosphorus in them!
800-1200 mg daily. That's it, that's all folks. It's a pretty low number. A serving of asparagus comes
in at around 72mg/serving (1 cup). White sticky rice is a paltry 40-ish mg/serving. So far so good. I'm pretty pleased with myself. But the sunflower seeds. Oh those traitorous seeds: 1478 mg/1 cup
serving. So I have been overloading my poor system for a couple of years. That makes me sad, because all someone had to do was make me aware of the numbers. Not in a pushy way, but just
"Hey, RachelT, here's a booklet on phosphorus levels in foods." I can react to numbers. Lists saying High Phosphorus Food vs Low Phosphorus Substitutes really do nothing for me because I can see the tangibles. Obviously I need to see hard data and I need to be allowed to look at it on my own.
So. The sunflower seeds are out. I no longer feel compelled to eat them, because frankly, I have a lot of living left to do and I still have old journals that need to be shredded/destroyed. I don't want them read after my death. I think about things like that!!
Over the past couple of days, the calf muscle pain has started to abate. I can get up and walk normally. I have started to look more seriously at what I'm eating and how much it's costing me in phosphorus. I have blood work tomorrow and I'm sure the labs for phosphorus will be sky high, and
protein will be quite low. But that's OK because now I know what I'm doing and what numbers I need.
That handy little website? http://nutritiondata.self.com Type in the food in the search bar and you'll get a complete breakdown. Brilliant, helpful website. I am in love with the person/people who put it together. :)
So it took awhile for me to blog--& included a bit of a health scare to get me back to it--so hopefully I'll be back to posting more regularly. If you think I missed anything, or you have questions, leave them in the comments! Thanks for reading!
RachelT
That all changed this weekend when I started noticing lower calf muscle pain. My first thought was "how much can i keep from my doctor?" (I am a good patient, but not a great patient, especially diet wise. I have unresolved food issues. I'm currently in therapy, so we'll see how that goes. TMI? OK, moving along. :)
I also thought it was maybe because I hadn't exercised in a week--snow is not my friend. I ordered an exercise bike, so figured the 10 days waiting for that would be OK. Not so, young grasshopper! Not so. So I've re-added walking to my evening schedule (yes, you're right, the snow has melted).
Here's the main thing that I noticed happening: if I sat for long periods of time, my legs would be weak/shaky and painful, and I felt like I would have to restart myself--moving was at first painful. After walking for a couple of minutes, I was fine. Moving at regular speed (lightspeed) and with little to no pain. However, once I sat again, the whole process would restart. Since one of my jobs is sedentary, I took two days off to keep myself out of that environment and I was able to be at home and up and moving around a lot. Sit, read for 20 minutes, walk around the house, repeat. Not a bad couple of days off, but a little scary while waiting for the phosphorus to flush out.
The culprit? I should've known right away--yeah, too much phosphorus in my blood, along with some slight malnutrition due to not enough protein. UGH. Ladies & gentlemen, the balance between protein, calcium, phosphorus, etc is a FINE LINE to tread.
So, I started looking up information for low phosphorus foods. What I really wanted were some numbers I could understand. I never felt like I got that from my clinic. I was pretty honest with them
when I told them I ate sunflower seeds (which I knew were high in phosphorus). What the clinic
failed to tell me was HOW HIGH.
Yesterday I found this fantastic website that breaks down pretty much ALL foods into ALL their components. So off I stumble to check out foods I eat regularly: bacon, asparagus (high, but acceptable), sticky rice, various other veggies and meals. Then I very hesitatingly looked up sunflower seeds. Because once you have the information you need, you have to do something with it, like change. And while I've been changing my diet over the past few months and exercising more, I haven't given up sunflower seeds. It's been a bit of an addiction. Not good. And no more.
Let me explain the ideal daily amount of phosphorus allowed a dialysis patient who struggles with phosphorus--some of you lucky buggers don't have this problem. I am jealous as I love foods with phosphorus in them!
800-1200 mg daily. That's it, that's all folks. It's a pretty low number. A serving of asparagus comes
in at around 72mg/serving (1 cup). White sticky rice is a paltry 40-ish mg/serving. So far so good. I'm pretty pleased with myself. But the sunflower seeds. Oh those traitorous seeds: 1478 mg/1 cup
serving. So I have been overloading my poor system for a couple of years. That makes me sad, because all someone had to do was make me aware of the numbers. Not in a pushy way, but just
"Hey, RachelT, here's a booklet on phosphorus levels in foods." I can react to numbers. Lists saying High Phosphorus Food vs Low Phosphorus Substitutes really do nothing for me because I can see the tangibles. Obviously I need to see hard data and I need to be allowed to look at it on my own.
So. The sunflower seeds are out. I no longer feel compelled to eat them, because frankly, I have a lot of living left to do and I still have old journals that need to be shredded/destroyed. I don't want them read after my death. I think about things like that!!
Over the past couple of days, the calf muscle pain has started to abate. I can get up and walk normally. I have started to look more seriously at what I'm eating and how much it's costing me in phosphorus. I have blood work tomorrow and I'm sure the labs for phosphorus will be sky high, and
protein will be quite low. But that's OK because now I know what I'm doing and what numbers I need.
That handy little website? http://nutritiondata.self.com Type in the food in the search bar and you'll get a complete breakdown. Brilliant, helpful website. I am in love with the person/people who put it together. :)
So it took awhile for me to blog--& included a bit of a health scare to get me back to it--so hopefully I'll be back to posting more regularly. If you think I missed anything, or you have questions, leave them in the comments! Thanks for reading!
RachelT
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