Skip to main content

Running on empty

Energy. What's that?

During my last nephology appointment, I mentioned that my stamina was declining and that I'm, in a word, TIRED!

My doctor's first thought was to check TSH (thyroid-stimulating hormone) levels. Excellent idea. Unfortunately, my levels are medicated, controlled, recently tested and within the 'normal' range. Oops.

To be fair, my energy levels are reminiscent of the months prior to being diagnosed with hypothyroidism - not quite as severe, but still not good.

On days I work from home - I'm a data analyst/programmer - I frequently have to either take a nap over my lunch break or crash once I'm done for the day. On days I go into the office, I often myself in bed by 8pm (and sometimes earlier).

Sigh. This is no way to live life.

I've asked about this in the Polycystic Cysterhood Facebook group and others agree that they've seen their stamina and energy flag as kidney function has declined. At least I'm not alone.

Until I find some way to recapture that lost pep, I'm trying to recognize my limitations and work with them. Instead of marathon gardening sessions, I'm finding that 30 to 60 minutes blocks is the extent of my commitment. And even then, I have to take things slow and HYDRATE. Last weekend I actually sat down and rested for a bit.

Who IS this person?

I love my life and I refuse to give it up. The key, I believe, is to figure out my new normal and be thankful for slight modifications rather than eliminations.

Comments

Most Read

Artificial kidney

I have a somewhat fanciful thought of what an artificial kidney would look like. I see a device that is shaped like a kidney (of course) but is completely clear so you could see all the blood circulating through it. Granted, once it's implanted no one's going to see it but - hey - it's my vision. The closest picture I can find of what's in my mind's eye is this image. Granted, that's a picture of a kidney-shaped paper weight and it's a little cloudy, but I know you can picture it too. My, oh my. My imagination is not even close to reality. According to a post from the American Journal of Kidney Diseases , there are three new approaches being explored right now: the automated wearable artificial kidney ('AWAK'), the wearable artificial kidney ('WAK') and the implantable artificial kidney ('IAK'). My money's on the IAK and you'll understand why once I show you the concept pictures of the other two. The AWAK is said to ...

Oops I did it again

Oops! I advocated for myself again. After getting the results from my latest CBC (Complete Blood Count), my doctor put me on daily Vitamin D-3 to increase levels but did not recommend iron supplementation for (what I consider) borderline anemia. I was glad to hear low Vitamin D might be adding to increased fatigue but I still wondered... I have a history of low Ferritin levels, despite sufficient RBC/hemoglobin counts. So... I made an appointment with an independent lab and had them check my iron levels. Results? My Ferritin level is at 51, well within the 'normal' range of 100-232. Still, I wondered... So I did further research. My low Ferritin level was originally discovered when I was diagnosed with Restless Leg Syndrome (but I may actually have Periodic Limb Movement Disorder). So I looked up literature regarding recommended Ferritin levels given RLS/PLMD. Huh. Treatment recommendations are that Ferritin be no lower than 75 for people with RLS/PLMD. Bingo! ...

No denying it

So this happened today. Despite being on Jynarque for over a year. Despite increasing the dosage to 90/30. Despite watching my sodium, drinking gallons of water and losing weight. My creatinine levels continue to trend upwards and my eGFR continues to trend down. It's now at 21. Big sigh. Discussions are underway to determine dialysis modality and whether I can do it at home. A fistula consult with the surgeon has been ordered. And I still wait for the transplant evaluation with Mayo (it was rescheduled due to Covid). So if you know anyone who would be interested in helping out a Type O girl with a donated kidney, please send them my way. Take care.