It’s All Going To Shit

What a crappy week.

In no particular order:

  • Between the back up of toxic fluids in my system combined with the prednisone, I’ve gained about 35 pounds in the past few weeks. This is more than prednisone alone, for sure.  As I’ve mentioned a million times before, this water weight is SO much worse than “normal” weight. It’s like slogging through a pool when I try to move.  It’s so much work.
  • My stomach is so bloated, it’s painful.  I ordered more scrubs in a larger size because there’s no way I’ll be able to fit in my regular clothes soon.  
  • I’m so jittery (from the prednisone? from the toxins?) that things like writing or washing dishes is difficult.
  • I’m having trouble walking again.
  • Most mornings, I wake up with my eyes nearly completely swollen shut due to toxic fluids building up.  Even the conjunctivae of my eyes are swollen.  It gets better after an hour or two but never back to normal. I mean, who knew kidney disease could cause this?
  • This is always really hard to describe but my skin feels really weird. It’s “prickly,” like a million needles poking me. It’s not painful, exactly, but with every move I make, I feel it. It’s the shit building up in my system.
  • Sleep is a joke. I’m usually awake until about 5:00 or 6:00 am.  I’m so grateful to be off this week and next. I don’t know what’s going to happen when I have to go back to work.

It all just got so bad so quickly. I wasn’t expecting that.

I had the repeat biopsy yesterday. It was really miserable. The first biopsy was so simple and so quick. The tech did a bedside ultrasound, the doc numbed me up, got the samples, and I stayed in a hospital bed for six hours.

This time, it was done through “interventional radiology,” whatever the hell that means.  The doc initially wanted to sedate me but I said no to that.  Instead he just used a local like last time. They did an ultrasound in the “big” machine, the same one I had the bone marrow biopsy done in.

I was completely uncomfortable, having to lay on my fat bloated stomach and on my face and yet trying to breathe. My blood pressure was sky high even after they gave me two doses of medication. I was completely jittery and shaky.

It was clear the doc was having difficulty getting the samples. “Don’t move, don’t move.” He kept trying to direct my breathing (“breathe in, breathe out, hold it”) but it was all on his schedule, not mine. I couldn’t catch my breath, and I felt like I was going to hyperventilate. I managed to get through it but it was really rough going.  I felt like an idiot. I mean, who can’t just lay there and breathe?  Me, apparently.

Recovery was shorter this time. I only had to stay in the hospital for about four hours instead of six. They didn’t retest my hemoglobin, which I thought was weird. The last time that’s how they said they knew there was no internal bleeding.  But not this time. Whatever. They let me go. That’s all I cared about.

The doc who did the biopsy wasn’t sure where the samples were sent to but he thought it was the place in Arkansas where the first one was sent.  If the last time is any indication, we should have the results fairly quickly, early next week.

I’m no longer hopeful though that a new round of chemo is even an alternative. It just seems that when your kidneys shut down to the point where your eyes are nearly swollen shut, there may not be much likelihood of coming back from that.  I could be wrong of course.  I will say though, at this point, with as shitty as I feel, dialysis might feel like a relief. I don’t know. I just can’t see how I could feel much worse.

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