Monday, January 18, 2016

Feeling defeated tonight.

My albumin/creatinine ratio today had risen from 3159mg/g on Friday to 5986mg/g this morning.  That's nearly double in 3 days.  And for the LIFE of me, I can't come to any reasonable conclusions as to why.  I was on such a good, DOWNWARD trend up until today.



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.


Sunday, January 17, 2016

Living by the numbers....

I feel like I'm letting "numbers" dictate my life right now.  Between the scale and my blood pressure cuff, I feel like numbers dictate everything about my day.  More specifically, it's affecting how I feel physically.  I may be having a good day, but then I'll step on the scale to see how the diuretics are working, and when I see that I've continued to gain weight, I freak out.  That makes me want to take more diuretics, which are inherently bad for my new bean.  And then I start to feel like I'm drowning in fluid, even though I felt find 5 minutes before.

I swear, all of this shit is really starting to mess with my head and I need to figure out how to get in front of it because I'm sick to death of reacting.

The weight really bothers me, I can't lie.  I think I should be lighter than I am because of all of the muscle tone that I lost after surgery.  And I also only eat half as much as I used to, so I don't understand why my weight is nearly the same or a little more.  I know that I'm retaining fluid, but it feel like it's set up residence in my torso lately and it's uncomfortable.  I've spent a lot of time this weekend lying on the sofa with my heating pad because it's unbelievably cold here in Minnesota right now, and it feels like I feel worse the longer I sit here.  Once I get up and move around, I feel a LOT less pressure in my chest and lungs.  But at the same time, I've been sitting a lot trying to keep my legs up to prevent swelling in my lower legs.  It's gotten a lot better since we switched up the amlodipine (blood pressure med) on Friday, only taking it in the evenings now as opposed to mornings and evenings.  That's made a HUGE difference in my ankle swelling.

With all of the protein I'm still spilling (which is certainly less than it was but not as little as we'd like) I'm bound to have some swelling, but it's hard for me to deal with any of it.  My expectations after transplant are to have a normal life.  No one goes into a transplant thinking about all of the sacrifices they'll have to make, or the substandard parts of their life.  I sure as hell didn't.  I don't want to be a whiner, but my expectations after transplant are to live a completely normal life (except for all of the meds....I can deal with those), but I don't want to have to watch how much potassium or phosphorus I consume, and I don't want to have to freak out about salt because I'll retain fluid.  I just want to live like a freakin' normal person.

Since we stopped the amlodipine, my swelling in my legs/ankles has gone down, but my blood pressure has gone up, which I'm sure will make my numbers shitting tomorrow when I go to Mayo.  I can't get into plasmapheresis until 1:30pm any day this week which makes for long days when you have to get blood work (which has to be done by 8:30am).  Luckily, tomorrow I only have urine labs, and I can do those at any time, so I won't have to drive at 5:30am!!!

I was talking to my doctor last Friday, and mentioning that both Izzy and Joacim were showing signs of getting a cold, and he then wanted to do an IVIG infusion (bleh), but with plasmapheresis being so late, I'm not sure how we're going to fit it in, so I have absolutely no idea what I'll be doing this coming week except for tomorrow.  The rest is totally up in the air.

Right at this moment, I'm just not feeling great.  I can tell when my blood pressure is high, and I can feel every kilo of weight that's extra.  It makes every breath noticeable, and a constant reminder that I'm still not OK, and that there's still not an end in sight.  I wish I could go a whole week without having to check my weight or blood pressure....to see if it would change how I feel physically.  I mean, I wonder how much of this is in my head and how much is real.  I honestly can't tell anymore.  And what's in my head can be manifesting physically too, so I don't know if I'm ever going to know.

Transplant / Living Donor Info for me (edited)

I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info.  I&#...