I have no catchy title...just a lotta whine

More whine today....

I'm not feeling better, and I'm losing patience.  I'm sluggish both physically and mentally....what I wouldn't do for a burst of energy.

I know that yoga makes me feel better....it always has.  Back in January and February, I was going pretty regularly, and I felt so strong and vibrant.  And then pink eye and sinus infection.....nothing's been the same since.  I've tried to go to yoga after work, but I think I described what that's like in my last post :)  I went the other morning, and it felt amazing.  It just made me realize how much of a physical difference there is between the me at 9:45am and the me at 6:45pm.

I've been doing a few manual exchanges during the day to try to help take the weight off, but I can't tell if it's helping or not.  I'm not sure if I should fill with more fluid for a shorter amount of time, or less fluid for a longer amount of time.  It feels like a guessing game, and I'm guessing wrong at every turn.  The weight just keeps creeping on, and I feel powerless right at this moment to stop it.  Usually I can "course correct" quicker, but all o my little tricks aren't working right now.

And my labs.....damn damn labs.  My phosphorus is getting better (lower) but I've been relying on those binders and I didn't ever want to do that.  I saw today that my potassium was high right now, and that worries me more.  It's at 5.9 right now, and high potassium is a risk factor for heart issues, so I feel like a freaking ticking bomb.

I need time. Time to get into a morning yoga schedule.  Time to plan more appropriate meals.  Time to prepare them.  All of these problems are fixable in theory, but the amount of energy it takes to do any of it isn't something I can fix, and it's my limiting factor right now.  Eating healthy takes work, and I don't want to spend my beautiful,  sunny Sunday meal prepping.  We don't get enough of this beautiful weather, and I want to soak in as much as I can.  Besides, I'm so exhausted and sleepy all the time that even if it were a crappy day, I'd still be too tired to do much.

I may have a smile on my face, but in  my head I'm thinking, "fake it till you make it".

Also, no answer from Mayo yet.  My coordinator is on vacation, but I was able to talk to another nurse who's covering for her.  They do have all of my labs, but it probably won't be until Tuesday that I hear anything back.  Good news is that my labs today showed that my albumin was at 2.0, and I don't think it's been there in 4-5 years.  Hopefully it's enough!

The frustration of weight control

I have become acutely aware of my weight since I started PD.  Every morning when I wake up, the first thing I do is go to the bathroom and then weigh myself.  It's also the last thing I do before I hook up every night.  The reason is to help me understand my fluid balance, and to help me select which concentration of dialysis solution I need for that evening.

Unfortunately, it also has the side effect of making me bat-shit crazy about gaining any weight.  I had heard horror stories of PD...people gaining 20 pounds.  At the beginning of this journey, I didn't understand.  The fact that my kidneys still work a little helps me control my fluid balance a lot, and I was usually able to pull off all the extra fluid every night.  But I've noticed that changing in the last few weeks, and it's quite unnerving.

Nothing feels right right now, and I can't put my finger on it.  The level of exhaustion has reached new highs.  My sleep requirements are starting to get in the way of everything.  And any physical activity is met with a general flu-like feeling the next day, with aches and pains (especially in my hips and legs).  I'm cramping quite a bit at night too, and Joacim tells me that I was throwing punches in my sleep last night.

It's all very, very draining.

I'm not sleeping.  I'm gaining weight.  I'm not exercising.  I'm sore ALL THE TIME.  I have occasional (and unpredictable) pains in my stomach that are only remedied with a prone position and a heating pad (which makes customer calls a bit difficult).  And I have no idea what to do to fix any of it right now.

I suffered last night through a manual fill just to try to pull off extra fluid.  I put in ~1800ml, but then I had such a hard time breathing that I never left the bedroom after that, and just hooked up to the cycler to remove it before my full nightly dialysis.  I was able to pull off an extra 400mL for that manual exchange, which is great, but I had to stop my full cycle an hour early because I got on it so late, so I was only able to pull of 850ml overnight, when I typically pull 1100-1300.  Essentially, 2 hours of extreme discomfort for zero gain in overall fluid removal.  And I weighed myself this morning, and I'm heaving in my morning weight than I've EVER been since starting dialysis.

It's all horribly discouraging.  I'm trying to keep a smiling face, but that smile is waning.

Still no word from Mayo yet either, even though I know they have my blood results.

Even more bad news for me is that my amazing PD nurse, Amy, is moving on to a brighter future at a new location.  It's great for her, but I'm really sad about it.  Amy is an AMAZING nurse, and I also knew that she had MY best interests at heart.  She truly cares about her patients, and has been with me since the beginning.  I'm not sure if they're going to replace her position, but even so, they can never replace the compassion that she showed me.  This makes me really nervous because I know how hard she's been working with Mayo to ensure my transplant continues to move forward.  It looks like it's going to be more work for me coming up.

Amy, if you're reading this, I want to tell you Thank you.  Thank you for treating me like a human, and for giving me the credit that I know my body.  Thank you for teaching me, and listening to me.  You're an incredible nurse, and an even better friend :)