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 ;)
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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&#...
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yikes! i say take the drugs that make you feel good and don't worry about your employer right now. try to relax and roll with each moment, each bit of news as it comes. i know this is all easy for me to say/type bc i am not you. but i am thinking of you and hoping this is just a hiccup - but man, fsgs just SUCKS ��
ReplyDeleteHi Jen, yeah, really understand how you feel. My creatinine was rather ok last time, around 1.39, 24h/protein was 3g, but anyway, the doc said maybe we need to do another biopsy (all cool, had only two so far, why not a third one). I told him no thanks, its summer now, I spent the whole winter and spring in hell thanks to the high dose of prednisone and now I should ruin my summer? Anyway we all know where this crap is going to end up, so taking the medicine, living as healthy as I can but still try to enjoy life. Doctors are good but also not God. I mean with this disease you constantly feel like a test object, "let's try this, let's try that", and a few month later you watch your body and it's just destroyed AND of course it didn't help, BUT at least made a few Pharma Companies more rich on the way. A doctor anyway would never tell you "I have no idea what to do", the most (not all) are too proud to do so. Instead of that they tell you some bs and prescribe you even more bs. Keep fighting!
ReplyDeleteanother biopsy??? jeez! i say you made a good call
DeleteHi there,
Deleteyes, I think so too. I mean for them it's like, hang on, we have no idea how to treat this but this guy wants a plan, so let's win some time and send him for another biopsy. Well, they don't have to go through this anyway so it's easy to say "let's do one more". I mean I know it's FSGS and to be honest, after all this time I pretty much give a s..t which kind of this bloody FSGS it is. The only Question here is about the "time". So maybe I am lucky and if I swallow all my meds I can strech it a few years or the whole party will start earlier. But after all, nothing to do about it because I am not going to shot myself. Whatever comes, comes, I will stand and fight it anyway. What choice we have? I mean if we go to dialysis well, nothing to do about it. It's nasty, I know, but still better than to die. And if you get a transplant the party is for sure not over. Yes there are a few happy and lucky ones with a good outcome but don't ask about the rest. New kidney can fail, be rejected, FSGS can occur again, BUT again, what choice we have. We all sit in the same boat. I just wish there would be a bloody pill or injection still in my lifetime which can cure this s..t. I have seen so many people with much worse diseases got cured but this FSGS seems to be like a rocket science for them, nobody understand whats going on. Maybe we are just unlucky that we got this ten years too early. I bet in 2025 if you are diagnosed with FSGS they prescribe you a pill which you have to take one months and thats it. :)