Tuesday, October 25, 2011

A good nap : FSGS Sucks

Apparently a good nap is what it takes for me to feel better.

I left work yesterday around 10:00am.  I felt AWFUL.  For awhile there, things started to get dark, and my hearing was all screwed up.  When I got the sweats, I knew it was time to leave.

As soon as I got home, I got my jammies on and crawled straight in to bed and slept until around 2:00pm.  I slept less than I thought I would, but I felt pretty good when I woke up.

I woke up because I received a call from my clinical trial coordinator, Barbara.  They had a big pow-wow about me yesterday (due to my abnormal pap) and have decided that I won't take the Humira anymore, but that I can still be a part of the study (meaning they won't withdrawal me from it).  While I'm sad that I can't finish that part out, I agree with them in that my health is of primary importance. I'm thrilled to still be a part of it, that way I can stay in contact with these wonderful people.  AND Barbara has it all worked out to transfer my car to the doctor I wanted at Mayo clinic when I move, which is FANTASTIC!!!  I know that, because of this, I'll get the best care possible.

I have a doctor's appointment this afternoon with my neph. I'm going to ask him for a script for my increased metolazone dosage, and I want to talk to him about albumin infusions.  I've tried to do a little research, but the info I'm looking for isn't out there, which puts me at a disadvantage because I'm sure that my neph is going to say no.  I'm just thinking that, if I can bump up my albumin enough then this swelling will go away for a bit, and then it's like starting from a clean slate.  I can see what (if any) foods / activities trigger the swelling and work towards figuring out what works for me.  I know he'll say no, but I've got to try.  I'm also going to ask him to order a 24-hr urine to do this weekend so I can see where my albumin, creatinine and protein are at.  Wish me luck!

1 comment:

  1. Glad they have found a way that you can participate even though there have been some strangeness around it.

    About your sleeping issues - About two months before my move last year I finally had to break down and take Tylenol PM a couple of times a week. It really made a difference in my energy level - I find that I need lots of sleep and it was just not happening.


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