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 ;)
Tuesday, July 22, 2014
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