"I'm not feeling well today"

"I'm not feeling well today" is what I say most of the time.

"Sick" doesn't describe it accurately, and using that word tends to make people back up, almost associating the word with "contagious".  I was having freakishly watery eyes the other day, so I was carrying a tissue around, dabbing at the corner of my eye, and someone asked me if I was sick (this person doesn't know about my kidney disease).  And I think I said something to the effect of, "oh I WISH that we're the problem" because I knew the person meant something akin to a cold.  And then sometimes I wish I could just keep my mouth shut and say "yes" but that rarely ever happens.

"I'm tired" just makes it sound like I need a nap, and that's SO not even close to describing what it feels like.  I told my doctor the other day that I really only have energy to blink, and I meant it.  I was tired from holding my head up in the car yesterday on my 6 hour drive.  I'm winded by a flight of stairs.

I want to look back on this blog someday when I'm better and remember how awful this feels right now.  I'm sure I'll forget the physical part of this when I'm on the other side, so I want to make sure I note it often.

Do you know that feeling of heaviness on your chest you get when your body is submerged under water but your head and neck are not?  THAT is how I feel.

Do you know that ache in your joints and muscles a couple of days after a really hard workout?  That's how I feel.

Ever had that feeling like there are grains of sand in your eyes?  Yup...that's how mine feel.  And bulgy...like weirdly bulgy.

At the beginning of most days, my pants are too big, but by the end of the day I'm nearly in tears because I've swollen so much that they're tight.  And don't get me started on how my legs/feet feel.

It's not always like this...no.  When I'm in my yoga routine regularly and the stars align,  I can feel quite light in my skin, but that's rarer right now.  I'm in a bit of a cycle of long periods of sitting from work, one day of leaving my meds at home in the morning, and a few bad (but free) lunches through work.  I'm doubling up on the water pills, drinking lots of water, and resting a lot.  It's been 2 weeks since I last went to a yoga class, but maybe tomorrow  I'll feel better enough to give it a go.  I'm 3 pounds down today, 3 or 4 more tomorrow if I'm lucky.  But it's like starting over again every time.  I need to figure out a way to really be okay with this, and not just tell myself that I am, but I'm a work in progress.

Transplant at the U - Appointment #3

I figure I better start naming these posts with a bit more detail, that way they'll be easier to find and refer back to in the future.

After the crap that happened in the last few weeks, I ranted about it to my Facebook ladies, and one of them went out of her way to get me the contact info for the U's Patient Care Rep.  She called me back right away, and we had a great conversation (I tried SO hard to not be all "ranty") and she put me in touch with the manager of the abdominal transplant coordinators.  We played phone tag for a few days, but finally made contact this past Friday.  I explained everything that had happened, and everything I was feeling, and she REALLY listened.  She also gave me a few ideas for my appointment (set clear expectations was one).  She offered up a change of coordinators, but I declined at this time.  I just didn't want to add too many variables to this whole equation, but it's good to know that the option to change is available.

I had what I'll consider my 3rd transplant appointment on Monday.  I'm still unsure how I feel about everything, but I need to continue to document this so I can look back years from now and be so very thankful that I made it through (and who says I'm not an optimist?)

Anyway, I met with the "new" doctor that I had requested to switch to, and it was overall a positive experience.  I got worried at first because it seemed like he wasn't in the loop with everything, and I started getting this awful sinking feeling in my gut, so I kinda just "cut to the chase" and laid out the history and my expectations, and you know what?  I think I got better service because of it.  And my new doc seemed to appreciate it, and I think became more comfortable/open with me, so it was a win overall.  I won't go into the details of the visit today because, well, I'm just too tired to type it all (what I wouldn't do for dictation software so I could just talk instead of type), so I'll put it in bullet points:

• We talked about how creatinine rises exponentially with GFR decrease, meaning a 3.5 to 4.1 creatinine jump is not as significant as a 0.6 to 1.0 increase (essentially I can stop freaking out a bit)
• The amount of protein I spill is not an indicator of the aggressiveness of my disease.  The fact that it's taken this long to get a creatinine above 4 is actually a good thing in terms of recurrence.  He said that, when I get closer to failure, I'll actually start to notice a reduction in swelling as I'll be spilling less protein (which is so counterintuitive but the way he explained it made sense)
• He anticipates that it will be months to a year before I might need dialysis (this is a WAG, btw) but I'll have follow-up appointments (in-person) and labs every 4-6 weeks to monitor function.  He figures he'll have a pretty good idea by Christmas of what the timeframe for me looks like
• The average wait time for a cadaver kidney in this area is 4 years.  Having a living donor opens up a larger pool of people for me, and is likely to get me a kidney faster (no pressure, Joacim :)
• Up to 4 people can be "worked-up" to be a living donor at the same time for me, which I honestly didn't realize.  I know that the workup is expensive, and I incorrectly assumed that insurance would only do one at a time....glad to be wrong on this one.
• There is no magic GFR or creatinine number that will initiate dialysis.  It's based off of a lot of things, and closer, more frequent monitoring will help determine what that looks like for me.
• I met the night nurse, and she was able to get me set-up with a dialysis access education class for this Friday

All this AND I actually have a follow-up appointment scheduled in 3 weeks.  He was going to wait to do bloodwork until the next appointment but I asked if we could just do it now and he agreed, so now I need to find a time tomorrow to make it to a Fairview clinic to have those done.

In parallel to all of this happening, I reached out to my transplant care coordinator at Cigna.  She was out on vacation, but I left a message asking what it would take to switch to Mayo.  I held out little hope, but she left me a message yesterday saying that I COULD have my care switched to Mayo.  Cigna wouldn't pay for another workup for me, so I'd have to get all of my info accepted at Mayo, but it could be done.  While I'm thrilled that the answer was yes, I'm even more conflicted on what to do. It's hard to tell if things will work the way I want at the U, but I'd like to give them the chance.  And it's geographically closer.  On the other hand, switching to Mayo would pretty much relieve any anxiety I have in regards to what the hell is happening because if there's one thing I know it's that Mayo is a well-oiled machine.  They are a first-class operation, and there's something to be said for having my primary nephrologist and my transplant team at the same facility.  So it looks like I've got some researching and decision-making to do.

In the meantime, I'll continue to feel crappier.  I can feel it.  I can tell.  Just when I didn't think I could get any more tired, I reach another level.  It's shockingly awful to live like this.