Tired. Tired. Swollen.......

I'm still swollen.

Actually, I'm a bit worse than I was earlier this week, and I didn't think that was possible.

I wore compression stockings all day, and it didn't make a bit of difference.  My eyes are swollen, my face is swollen, my belly is severely distended...there's swelling up to my chest and through my lower back.  My skin is irritated and sensitive, and I have heartburn that a dragon would probably be jealous of.

For me, this drastic weight gain is like going from normal to being 9 months pregnant in 10 days.  And the associated pain in my back and hips from the added weight is unbearable, let alone the stiffness in my knees and ankles.  Putting on a bra feels like a medieval torture device due to the constriction it puts on my breathing.

In essence, I'm miserable.  Horribly, horribly miserable.  My husband is out having drinks with a friend, which means I'm at home with Izzy.  Normally, no biggie, but it's taking every ounce of strength I have to be coherent at this point.  I wish he'd come home.  I wish he'd get up with her tomorrow morning, but I doubt that'll happen.  I feel like I need to spend the whole day in bed, but I look around at the disaster that is my house, and I know that it'll be impossible for me to do it.

I bought this awesome light tent and some lights the other day to start playing around with my macro lens, and I haven't even gotten them out of the car.  Anyone who knows me knows this is unusual...I LOVE new toys and gadgets, especially those photography related.  I just don't have it in me.

I met with another doctor on Thursday, and the experience was amazing.  I hope to write more later, but needless to say that in that short conversation, I already feel like I gained something.  I'm signing up for a dialysis education class with Joacim, as well as meeting with a transplant surgeon to discuss the possibility of a surgical nephrectomy.  Yeah, I know...HUGE step.  This is not to say that I'm going to do anything...I just need to educate myself at this point.  But this is the first step in getting Joacim and I typed to see if he's a match for a live donation.  If he's not, then all of these conversations I'm having with this doctor will stop, and I'll wait for the inevitable failure of my kidneys.  But if there's even the remotest possibility that I can ditch these beans and get a new one, then the chance to live a normal life might be too good to pass up.  There's A LOT to research..a lot of questions to ask, but I'm thrilled that there's someone out there who's willing to entertain my ideas.

Thanks for all of your kind words and thoughts.  I'm in a pretty low place right now, physically, and it's affecting my mental health as well.  Not being able to move around, or fit into my pants, or even bend at my waist at this point is wearing very, very thin.  I'm tired of winter...tired of snow...tired of wearing boots and my winter coat...tired of salt on my car...tired of this messy house..tired of the clutter...tired tired tired.

Okay, thanks for visiting my little black cloud of doom today.  It'll get better, I know...but allow me the wallow, won't you?

Clinical trial pre-screen

I had my pre-screen appointment for the newest clinical trial today at Mayo.  It was an early morning...got up around 5:00am in order to make it there by 8am, which was my first appointment at the Clinical Research Center.  I had to drop off a couple of urine samples and get some blood drawn, and then I was off to get my ECG (electrocardiogram).

waiting for my ECG

right before the ECG...not a great photo, but she wanted me to put my arms by my side

I think you can guess what this was

The ECG was incredibly quick...I'm thinking it was only about a 60 second reading but I passed.  After that, I went over to the Nephrology department to meet with the clinical trial coordinator and Dr. Fervenza.  She asked a bunch of questions for the study, and he did a physical exam.  He was wonderful this time, making sure to allow plenty of time for my questions, and I could tell he was definitely making the effort, which was such a great feeling.  Anyway, my blood draw had to be sent out due to the study, so we didn't have my hemoglobin results, so he ordered a blood draw in order to get that taken care of.  It came back at a 10 this time, which means I'm unofficially cleared for the study, but Dr. Fervenza wants me to get more iron, so I'll have to get that taken care of sometime this week.

I was EXHAUSTED by this point.  I made the drive home, stopping in Eden Prarie to run an errand.  Once I got home, I went straight to my pillow and woke up 3 hours later.  Izzy was kind enough to take a photo of me once they got home.

I'm swelling A LOT right now.  I've gained 10 pounds since Sunday morning.  During the physical exam, Dr. Fervenza noted that my swelling has gone up through my lower back, which (physically) feels awful.  This wildly swinging weight gain/loss is getting old and painful.  It feels terrible to gain so much weight so fast, and it takes a few days to adjust to it.  In the meantime, I feel like a penguin waddling since my thighs are swollen and rubbing together.  I have the exact opposite problem I had 2 weeks ago when I couldn't find pants to fit because I had LOST so much weight.

I have 2 meetings tomorrow and at least 5 hours in the car.  When I feel like this, I can barely manage one appointment a day.  It completely wipes me out, and it's about all I can manage right now, until I re-adjust.  This makes it hard, work-wise, but makes me grateful for the flexibility that my schedule allows.