I haven't spoken to my doctor yet about these results, so understand that everything I'm writing is my own brain coming to it's own worst conclusions. So last Friday, we changed up my amlodipine to stop taking it in the morning, yet continue with the 5mg dose in the evenings, which I've done since Saturday morning's dose. I did notice, over the weekend, that I was feeling less and less good. I was retaining more and more fluid, my weight was increasing as well as my blood pressure. I explained away the blood pressure by the amlodipine dose change. I understand that these things can sometimes take a few days to level out, so I didn't want to freak out too much. By Sunday, I could REALLY tell that my blood pressure was high again, and sure enough it was 160/97 Sunday evening (which is terrible, for anyone that doesn't know that). I had easily gained 2-2.5 kilos since Friday as well, and I was feeling every single one of those, with seemingly all of the fluid accumulating around my ribcage and my eyes. Fuck, it just feels truly awful.
My bp readings during plasmapheresis were high today as well (not as high as at home, but higher than the last few sessions had been). I spoke to my doctor about how I'd been feeling lately, and he agreed to increase the lasix for a couple of days to see if that helped with both the fluid retention and the blood pressure. He didn't want to change the amlodipine again because we both know that it's going to cause lower extremity swelling on me, so the hope is that losing some of this fluid will lower the bp, and I'm on board with that theory.
But tonight, right before Izzy's gymnastics class (which I had actually planned on going to for the first time since transplant) I casually checked my lab results from today and just felt like I had been punched in the gut. I just can't understand, and I just can't stop my mind from swirling around the number. What does it mean? What is this kidney trying to tell us??? Is it unhappy about the higher blood pressure? Is it upset about the fluid retention? What does it NEED to be appy again? I just feel so defeated. I'd love to think that this lab result was an outlier, but I don't. My gut has been telling me something is off all weekend, and my gut was right. I'd love to think that when I get labs done on Wednesday again that it'll be back in the 3000 range, but my protein hasn't ever dropped that fast. Once it gets high, it takes weeks to recover. In my brain, seeing that number tonight set me back 2 more weeks. That's 2 more weeks of plasmapheresis....2 more weeks of this catheter...2 more weeks of the early morning drives...2 more weeks of a less-than-ideal existence.
WHY did I even check the results? It's completely ruined my night, and made me think of all sorts of horrors. Even though the results wouldn't be any different, I still wish I had heard them from my doctor. And I think that might be a problem for me too. I realize that I'm becoming very dependent on him for my mental stability in regards to all things "kidney", and I think that's dangerous. SOMEDAY I'm going to have to deal with setbacks like this possibly, and not have the luxury of a face-to-face or scheduled phone call with my doctor the next day. I have been INCREDIBLY fortunate in that my nephrologist continues to have regular contact with me this far post-transplant. I'm not sure if "lucky" is the right word because the reason for the continued contact is due to the intricacies and complications of my case. Most patients at this point have been either released to their local nephrologists, or are seeing PAs (physician assistants) regularly and seeing their doctors with much less frequency. I haven't even had one set of labs done locally yet, and I'm terrified for that day for fear that they're going to screw up the processing of the labs, and then throw off my meds.
I'm guessing this happens to a lot of people who have been through some sort of trauma. And let me be clear...the transplant itself is not the trauma I'm referring to. The transplant has allowed me to be here to bitch today :) The trauma is the recurrence of my disease, and the assorted complications due to it. I'm strong, yes, but a part of me is terrified of being released from my team at Mayo. I guess a part of me may also be thrilled when that time comes, because that means I'm well enough to be on my own, but I'll probably always be a teeny bit terrified. It's clearly time for me to start seeing my therapist again to help me work through these issues.