Wednesday, January 7, 2015

The year may change but the routine doesn't

Honestly, I can handle this dialysis thing.  I mean I really feel like it's fitting in to my life after this break from work.  I was able to experiment with it a little and get more comfortable, so much so that I feel I can connect myself in my sleep!

I was cramping a few nights ago, and it was truly awful.  They're like charley-horse cramps, only WAY worse.  I had one in my right leg, and it started behind my knee on the right side.  It then radiated all up and down my leg and through my hip.  The only thing that really provided any relief was getting out of bed (mind you, it's around 1:30am) and standing on my right leg only.  That kind of forces the muscle to do what I need it to do (and it's something that my dialysis nurse taught me when I first started dialysis in the hospital and had a CRAZY cramp the very first time).  I'm not sure why I was cramping, as I don't feel like I was taking off too much fluid, and my blood pressure readings agree.  Hopefully this isn't something that'll happen frequently.

I had labs done on Monday and my dietician called back with the results.  It seems like my calcium and potassium are looking good, my PTH abnormally low but that's better than being high, and my albumin is still low at 1.7.  My hemoglobin and iron stores are good, so I can back off of the EPO injections and iron infusions now, which means 2-3 less pokes every month.  Unfortunately, my phosphorus has risen a lot since my last draw...I'm still under 5, but not by much.  I could start taking my binders (not on them yet), but I really want to see if I can control it better with diet as this dialysis thing isn't going away any time soon.  I talked with the dietitian to try to figure out what changes I need to make, and they all suck because it means I can't have what I want.  I've been eating a lot of dairy lately as I've re-discovered the taste for it (milk especially) and its a great source of protein, but it's also really high in phosphorus.  So are beans, which are my go-to protein because they're easy and yummy.  I'm supposed to keep phosphorus consumption under 1000mg/day, and I'm struggling a little with how to do that.  Cheese/dairy is a quick, easy protein that's portable, and beans are quick and easy too.  I need A LOT of protein every day, so high-protein foods are great, but I have to be careful because they can also be high in phosphorus.  The worst part of it is that most nutritional labels don't list phosphorus content on them, and that makes it hard to make easy, quick decisions about what I can/should be eating.  I hate how much time and effort this particular thing is taking.

I've also noticed my weight creeping up, and I'm terrified.  I had no idea, but I could be getting an additional 400-500 calories through the dialysis solution!!!  That's a lot of calories every day to offset.  My appetite is pretty healthy again, and with the time off the last 2 weeks, I've had some time to snack (apparently too much).  I started working out again, so I'm hoping that building muscle mass can help offset the weight (or at least make me feel like that's the reason I'm gaining weight, rather than just eating too much :).  I feel like my life is swirling around my weight and food right now, and it's not a fun place to be.

2 comments:

  1. Overall, it sounds like you are doing better, this is great to hear!
    I love organic whole milk, can't live without it!

    ReplyDelete
  2. For the most part, ever since my first transplant in 1999, my life has been swirling around food and weight. Not just for looks, but because so many of the meds can cause metabolic disorders. I am not supposed to have sugar basically at all, because I am becoming insulin resistant due to meds (she says as she slurps down a vanilla iced coffee). Also, certain meds throw other levels off. Magnesium gets sucked out, B, D, etc.

    But yeah, for looks too. Prednisone, prograf = flabby bod, chunky cheeks, My mid section will never be bikini ready again. Meds + two transplants that split me wide open. BUT, I wouldn't trade it for the world. I am alive due to transplant and I believe I have my current personality because of it all.

    Glad to see that some things are better.

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