Saturday, October 29, 2011

Pee pee peeeeee! : FSGS Sucks

Well, since this past Tuesday, I've lost 5 pounds.   And I FEEL the difference!  Did you know that there are bones in your feet and ankles????  :)  The reason I say this is because I haven't seen mine in...oh....8 months!!!

And I have an achilles tendon....seriously...I saw it today.  I'm not shitting you!  Granted, it might be gone tomorrow because I went a WEE bit overboard with tomato juice tonight when I got home, but it tasted soooooo goooooooood.

And tomorrow, I'll be here all day, peein' in my jug.  This time I was smart and got 2 of them.  I've been getting up at least 3 times per evening to use the facilities, so I figured I could easily fill one of those things up (and I think I actually did the last time, now that I recall). 

Anyway, I'm all prepared.  I ran all of the errands yesterday (I think) so tomorrow will be spent cleaning up magazines (as I've accumulated too many of them), doing laundry (boooooo), making pumpkin bread (yummmm) and carving our pumpkin.

And now I think I'm off to bed.  Night all!

Tuesday, October 25, 2011

Diuretic changeup : FSGS Sucks

I saw my neph today, and as expected, he shot down my albumin infusion idea.  His rational:  there's no data to support or even suggest that it works.  My rational:  why not try it anyway?  His response:  no.

Ok, so after a discussion about quality of life issues, and him still trying to justify our last interaction, I felt like I was able to make a little head way.

I NEED a break from this swelling....even if it's only temporary, I need it.  So we're essentially going to see how much we can push the diuretics.  There is a chance that my electrolytes could become whacko, and that's a pretty dangerous situation, but he also feels (rightly so) that I'm smart enough to get a drink of water when I'm thirsty (which I'm mostly likely to be even more so since I'm upping the dose) and to call if anything feels "off".  

So we've switched from Lasix (furosemide) to Demadex (torsemide), but kept the dosage the same at 20 mg / 2x day.  And we've also bumped up the metolazone from 2.5 mg / 2x day to 5 mg / 2x day.  We'll try this for a couple of weeks and see if there's any response. In the meantime, I'll get labs done weekly (starting Monday) to check on my sodium, potassium and magnesium levels to make sure everything's still in check.

I also started on a potassium supplement, and lemme tell ya...this pill is HUGE!  Holy hell, that's gonna be hard to swallow tomorrow morning, and it DEFINITELY won't fit into my little pill carrier/sorter thingy!  

I also asked him to write an order to do a 24-hr urine over the weekend.  Since I'm not participating in the drug-part of the clinical trial, I want to see if it worked, and a 24-hr for me will tell me that.  Keep your fingers crossed over the next few days that I don't dehydrate, pass out, or cramp up :)

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!

Monday, October 24, 2011

Oh so not myself : FSGS Sucks

I wonder if I'd feel this way every morning if I didn't have this kidney disease.  Saturday night and last night I got crap for sleep.  Tossing and turning...every position was comfortable yet still I rolled around like a crocodile killing it's pray.  Saturday I blame the Nephcure walk...all of that standing around isn't easy on this ol' body. But last night?  I have no idea...I'd be lying there...awake...all night.

I wake up every morning to puffy eyes, which makes it hard to see sometimes.  I've got a killer headache this morning.  It seems like a lot of mornings are like this, so I'm just wondering what I would feel like in the morning if I didn't have FSGS.  Would I have more energy?  Because whether or not I sleep 7 hours or 12 hours...I'm still tired.  Would I get better rest?  I'm up at least once if not twice going to the bathroom...an evil side-effect of all of the diuretics.

How I would LOVE to wake up full of energy...normal eyes (and ankles) ready to face the day.  I feel as though my work is suffering as I can't maintain any sort of focus lately.  Some people are going to think it's because I'm a "short timer" here now...knowing I've only got a couple months left, but that's not it at all.  I just can't find the energy or the focus. 

I took Izzy swimming yesterday, thinking that SOME sort of physical activity would help me sleep, but not so much.  Tonight, if I feel better than I do right now, I'll try to work out more.  Maybe Jillian's 30-Day Shred DVD is in order.  Pray for me that I don't hyperventilate during it!  :)

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&#...