1/week plasmapheresis is apparently not for me

It's been a rough few weeks for me.  I posted before about that I was going down to 1/week plasmapheresis to see how well my body handled the reduction and we've been doing it for 3 weeks.  The first week I did PP on Wednesday and had labs done....all was god, but I couldn't help notice that my chest and throat were getting a little scratchy.  That Friday I knew that I was pretty sure I had a sinus infection.  Weirdly enough, that evening I took my meds like normal, but 30 minutes after it I started vomiting (several times).  I have no idea why other than it happens sometimes when meds hit my stomach and there's not enough food in it.  I don't know about you, but I don't eat OR drink enough when I'm sick, and that was probably the reason why but who knows with this wrecked body.

I woke up Saturday for Izzy's soccer game and felt like a hammer had hit my face because the sinus infection was in full swing.  I just suffered through it over the weekend because I assumed I was going to be told it was viral and there was nothing that could be done.  By Monday I was pretty sure I had developed pinkeye, and Tuesday I woke up with my eyes crusted shut, which equals confirmation for me.  I DID go to urgent care for the pinkeye, and she also gave me a prescription for amoxicillin just in case I needed it, but she did think it was viral.  Honestly, I didn't want to take it if it wasn't going to do anything except contribute to antibiotic resistance, so I headed to CVS and bought a sinus rinse kit.  It's like a neti pot, but without the whole "HELP!!!  I feel like I'm drowning!!!" thing.  And I just rinsed the HELL out of my sinuses, which honestly DID make me feel a little better that day.

I went to Mayo the next day (which was a Wednesday) and saw my doctor.  I told him about my sinus infection/pinkeye and the prescription that the urgent care doctor gave me, and he told me to take it, so I high-tailed it to the pharmacy after my session was done.  I was feeling pretty miserable and my labs reflected it as my creatinine had risen to 2.4, which is a pretty significant jump.  My doctor assumed correctly that I probably hadn't eaten or drank much, so he instructed me to stop taking the lasix and to seriously hydrate, so I've been making it my mission to drink a minimum of 3L of water a day.  Stopping lasix terrified me because of the swelling that I knew would soon follow.  I've been pleasantly? surprised that the swelling hasn't occurred in my lower legs/ankles/feet like I had imagined.  But I'm also disgusted to report that it has relocated to more undesirable locations, namely my abdomen and my face.  I'm not swelling anywhere else.  And I've gained 5-6 pounds since we started (and 13.2 pounds overall since the fistula surgery 7 weeks ago), and it's all sitting in my belly.

It's been an interesting week of facial swelling as well.  Every day it gets a little bit rounder and my eyes get a little bit puffier.  Two days ago, I woke up feeling like a hammer had hit me across my left sinus cavity, and when I looked in the mirror, I was horrified to see that JUST the left side of my face was swollen.  My cheek was noticeably round, so much so that my upper lip drooped, and my left eye was nearly shut.  It took nearly an entire day of gravity to make my face look not-so-horrifying.
Sometimes, when I'm lying on the sofa surrounded by my thoughts, I wonder if I'm imagining it all.  I think, "Well, maybe if I just suck it up and go for a walk, I'll magically feel better."  And then I go outside and walk, and feel even more miserable when I'm done.  It's so typical to want to push yourself....to try to disprove your illness' grasp on your life, but it takes a smart person to know when you should pull yourself up by the boot straps or wrap up in a blankie and stay horizontal.  Luckily I'm smart ;)

Fuck, I hate it.  I hate how it feels in my body right now.  I can tell it affects other things like my memory and ability to focus.  Hell, it's taken me an hour to write 2 1/2 paragraphs!  And don't even get me started on the heat.  It was a really hot weekend here.  Izzy had a soccer game on Saturday, and it was in the upper 80's before noon, and fairly muggy.  I couldn't sit in a chair because I'd start sweating through my clothes, and the sun felt like fire.  I had a golf umbrella that I stood under, covered in sunscreen and sweat, and it sucked the life out of me for the rest of the day.  I came home and did nothing by lie down, and it seems like every day I wake up with just a little bit less energy than I had the day before.  It all feels very reminiscent of how I felt the month before I started dialysis.  I mean, this is a tired that's indescribable, but yet I keep trying.

I had plasmapheresis this morning as well, and my labs haven't improved, even after hydrating and stopping the lasix.  My blood pressure has been steadily rising the last week or so, and today it was super high at 171/91 (which didn't decrease like it normally does during the session).  My creatinine is 2.3 now, and my albumin has tanked to 2.0 which explains the abdominal swelling.  At this point, we could increase the lasix and pull off the extra fluid, but that would increase my creatinine.  My doctor could increase the prograf dosage, which helps by limiting blood flow to the kidney.  He'd probably try this if my creatinine were below 2.0, but it would be dangerous at this point because prograf can be toxic to the kidney as well as being an immunosuppressive.  So our plan is to do PP again Thursday and Friday, and schedule it for M, W & F of next week.  I'll do labs on Monday to help solidify the plan.  We want to get back to 2/week but that will depend on how quick my body responds to getting slammed by PP this week.  Fingers crossed for a quick response, because at this point I'll be driving to Mayo 4 times next week.  I have my 8-week follow-up appt for my fistula which includes another ultrasound that hopefully doesn't take an hour this time, and I'll also meet with the surgeon to see what interventions need to be made to get the fistula where it needs to be to start using it.

I've definitely taken 2 steps back since the last post, but I sincerely appreciate my doctor's quick response and pulling together a plan quickly.  He has another patient that is just like me which I find oddly comforting for me but horrifying for the other patient.  And my doctor must find it all extremely frustrating.

Back at square one

Sadly, we found out last week that my potential donor won't be able to donate due to issues with her own kidneys.  Thankfully the issues aren't life-threatening for Buffy, but it has eliminated her from being a kidney donor to me.  So what does that mean for me?

It means I'm back at square one.

This is tough because I know that Buffy reads this, and I don't want her to feel bad about anything at all.  What she offered to do for me is incredible, and I will never be able to thank her enough for it.  I am so thankful that we were all able to have dinner while she and her family were up here for Buffy's evaluation

But at the same time, I can't put in to words exactly how I feel right now.  I feel a bit hopeless, to be honest.  I feel like a ship adrift.  I feel like I'm slugging through every day, waiting for a bit of good news, but nothing's come my way so far.  It's depressing, and it's hard to imagine waking up feeling like this every day for the foreseeable future.

The way I see it, I'm a minimum of 6 more months out from a transplant, and that's being wildly optimistic.  Think about it....first, someone needs to actually call Mayo on my behalf.  Then there's the blood tests, and if that goes well, a visit to Mayo.  If all that checks out, then there's schedules to work with.  All in all, it could easily take 6 months, and that was if I had the next donor lined up (which I DON'T).

I called the donor team at Mayo last week to see if they could help me figure out what's next.  To say that they aren't very reassuring to me is an understatement.  Here's what I know right now:

• 10 people have called on my behalf overall
• 3 have been ruled out due to medical reasons
• 2 would be a positive crossmatch with me
• one was sent a kit and never returned it
• 2 additional donors contacted Mayo through the online questionnaire
• both were not responded to by Mayo, so they're following-up

All of that is depressing.  Mayo is telling me to ask my network, and this is something that I find very hard to do.  I post on this blog, and I post it to Facebook and Twitter, hoping that someone will read it and feel a call to help me.  I don't want to create another FB page solely for the purpose of finding me  a kidney...it's just another thing to manage right now.  I just have to hope that people will take the time to read my posts, and that something I say resonates with them.

I am thankful that I'm coping well with dialysis.  A part of me hesitates at this point to put anything positive here lest people think that I'm OK.

Let me reassure everyone that I AM NOT OK.  I CANNOT LIVE LIKE THIS FOREVER.

There...got that out of the way.  I am grateful that I handle dialysis well.  It's been 6 months that I've been on PD so far, and I'm managing it.

I did another adequacy test 2 weeks ago to measure how well dialysis is working for me.  We strive for 1.7, and I'm at 3.09, so that's great.  However, the last adequacy for me was 3.99, so it's dropped a little.  My PD nurse, Amy, says that's likely due to the fact that my urine output has dropped drastically since my last test, and I'm currently functioning at about 3% remaining kidney function.  Hopefully it doesn't drop any further, but I guess we'll see in 3 months when I test it again.

Izzy continues to be a fantastic little helper.  She love helping me do my meds every Sunday (which is great because I hate it) and she likes to be in the room when I'm setting up the cycler at night and tearing it down and emptying everything the next day.  She's incredibly curious, and I'm more than happy to help explain everything to her.

I did suffer from my first bout of sickness the last couple of weeks.  Two weeks ago, I woke up on a Wednesday with my eye matted shut like a sick kitten.  The culprit:  pinkeye.  Who in the hell gets pinkeye at 40, and they're kid is PERFECTLY fine???  THIS lucky girl, that's who.

I hate to tape my eye shut because it was so painful and gross.

The pinkeye eventually turned into a sore throat and cough, and eventually a full-blown sinus infection.  Throw in one night of insomnia (something I struggle with occasionally) on Monday, and I was an absolute wreck.  It couldn't have come at a worse time as Joacim was traveling last week.  I'll admit that I was terrified to leave the house, but it was spring break and I had to drive Izzy to daycare for the day.  That was the scariest 10 minute trip ever.  I felt like I was drugged, but I made it there safely, dropped her off and headed home, where I spent the entire day in bed.  Seriously, this whole thing kicked my ass....I was out of commission for 7 full days, and I wasn't able to work out for over 14 days.  FINALLY, I was able to make it back to yoga, although I haven't been hitting it as hard as before.  I've lost a lot of weight recently (10 pounds) so I'm just trying to be careful with how many calories I burn as I'm having difficulty eating right now.  Nothing tastes like anything.  I have no cravings, and I don't feel hungry at all, so it's something I'll need to keep an eye on.

This week promises to be challenging, with a 2-day trade-show, plus setup tomorrow.  It sounds like a lot of time spent on my feet being social.  Hopefully I can suck it up enough and pull it off.