Less than inspired - FSGS Sucks

The title of the post describes, fairly accurately, how I've been feeling lately.  I'm not inspired to do much of anything...I don't feel like blogging, taking photos, going anywhere.  I REALLY feel like sitting on some comfy piece of furniture with my feet up, a bowl full of yummy fruit at my disposal, and some Food Network or Cooking Channel.  THAT'S my idea of heaven right now.  But, since it's been a month since I last posted, I figure I better write SOMETHING, right?

I had my last infusion of the clinical trial on June 20, right after we got home from a lovely cabin vacation.  All went well with the infusion.  I did kind of "lose it" a bit.  I went there in an incredibly foul mood.  I was just at that point where I felt like, no matter what I did, nothing would be done to help me.  I was still having bleeding issues, but I know that my GYN won't do anything about it.  Sometimes I think people in the healthcare industry don't understand how hard it is to be a chronically ill patient.  So many doctors, so many drugs, so many complications.  Unless they're all in the same building, talking, it's a no-win situation for a patient.  It's a tremendous amount of work, and I was just at the point where I just didn't care anymore.  I was tired of fighting, tired of all of the effort I was putting into it all....just tired (I think I should rename this blog to "Just Tired" as often as I write it :).

I keep using the past tense "was" but it's probably still at "am".  I AM tired...still, of fighting, coordinating, blood work, urine tests, doctors visits...blahhhhhhhhhhhh.

Dr. F and I had a bit of a "come to Jesus" moment that I won't go into, but hopefully the outcome is good for both of us.  We're working on my diuretic dosages to see if there's something we can do to help the swelling.  I'm taking 60 mg of torsemide and 10mg of metolazone in the morning, and then I'm trying to not take any in the afternoon/evening. I've found that, no matter what time I take them in the latter part of the day, I have to get up during the night to pee.  Not getting a complete night of sleep was wrecking me, so I'm playing around with it all to see what works and so far, so good.  I'm not swollen so much during the day, and even the evenings aren't too bad.  I don't want to take so much that it screws other stuff up (like my blood pressure and electrolyte balance) because I don't need THAT hassle, and I'm terrified of the tolerance that I think I'm building towards these diuretics.  Fingers crossed that I can figure it all out.

I went back and met with Dr. I at the U to discuss the transplant evaluation, and some of the discussions that occurred during the evaluation.  Needless to say, at this time, I'm not a candidate for the waiting list OR transplant.  Until my creatinine starts going up, I'm pretty much out of options.

Dr. L and Dr. I both think that, technically, my kidneys are a lot worse off than the lab numbers are showing.  Due to the fact that I've spilled 12 grams or more of protein for the last 3 years, my creatinine should probably be higher, but my kidneys are most likely hyperfiltering, meaning they're trying to keep up with all of the protein loss by being "super filters", but that eventually they'll peter out within a couple more years.  I'm not sure if I got all that right, and it really doesn't matter because the only thing that doctors look at are the lab numbers.

So I'm feeling physically decent..surviving.  I'm focusing heavily on yoga, both from a fitness perspective (I'm GOING to lose this damn belly) and from a mental perspective....I can REALLY go inside myself during hot yoga, and I love how hard and yet relaxing it is.  I also think that, no matter how yucky I feel, going to yoga helps clear my head, and gets fluid moving in my body, which eases the discomfort.  From a work perspective, I'm still struggling with my memory as well as organizing my thoughts, but I'm going to try some mind mapping apps on my iPad to try to help organize everything up here.

And that's about it!  I'm going back to Mayo next with with a 24-hour collection to see what my levels are at now, so I'll probably post an update again after that.