Tuesday, July 22, 2014

Ummmmmm.......the downward slide?

I haven't been feeling well these last few weeks.  "Not feeling well" can mean a million different things, but in this case it's a "ohmygodi'msofreakingtirediliterallycan'tgetoutofbed tired".  Honestly, the levels of tired I can be never fails to amaze me.  I have been doing yoga fairly regularly, drinking green smoothies (not because it's cool but because they're yummy!).  I wouldn't say I've been eating as well as I normally be do, but I haven't bellied-up to a deep fryer or anything.  But no matter what I do, it doesn't help.  Nothing does.

So, labs.  I had the done last Thursday.  My thyroid was COMPLETELY wonky again, but that might be explained because I switched blood thinners.  The new one will not require the weekly blood draws, and I can eat green things again (double bonus!!!) without fear.  My iron was low but not awful, but my creatinine jumped.  I think it was 2.1 back in Marck, and it was 2.9 on Friday.  That gave me an est. GFR of 18.  Wow, kinda freaked out then.  I had the labs faxed to Dr. F @ Mayo, but he was on vacation Friday, and he didn't call me back until this evening at 5.  My primary care wanted me to make sure I was hydrated and repeat the labs, which I did today.  Now my creatinine is at 3.1, GFR @ 17.  So, worse.

Okay, I've got a LOT of thoughts on this, so I'm just gonna verbal diarrhea them right out of my head so I can sleep tonight, k?

1.  My thoughts are that labs should reflect your actual state, meaning I don't believe that I should put extra effort into being any more hydrated than I normally am in order for my lab numbers to improve.  Today's numbers show what's real.  I usually drink 3-4 liters of water a day....how much more is expected?

2.  My primary care wrote me a note telling me she'd recommend I hold off on taking torsemide (diuretic) until I talked to my nephrologist.  I think this is when I really started freaking out.  Seriously, these diuretics are literally the only way I could live a fairly "normal" life.  2 days without them and I can't wear most of my shoes or pants.

3.  So, do I stop taking the diuretics to see if it helps, knowing I'm going to suffer horribly?  And what if it does help?  What then?  Will I be expected to not take them at all?  In my brain, I think that sounds like drowning in my own retained fluid.

4.  I hate getting lab results late so I don't have a chance to review with my doctor and can spend the next 12 hours ruminating over everything awful.

5.  Am I now "sick enough" to be listed active on the transplant list?

6.  I'm scared because those numbers jumped quickly.  Nothing in this damn disease has been linear.

7.  Am I totally freaking our for no reason?  What if Dr. F calls me tomorrow and says something to the effect of "well, we knew it was headed in this direction" kinda thing and is all blasé about it?  I swear, the reaction a patient has is sometimes so dependent on the reaction from a doctor.

8.  If I were to go to an ER right now and they do labs, they'd probably hook me up to a dialysis machine out of sheer panic.

9.  I don't need to go to the ER....I feel technically fine, just tired and sleepy.  All.  The.  Time.

10.  How in the hell do I go about preparing my employer?

11.  What the hell is next????  I'm a planner people!  Knowledge is power.  And I have neither plans nor knowledge at this time.

Okay, verbal outburst complete.  I DO feel better ;)

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&#...