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| waiting for my ECG |
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| right before the ECG...not a great photo, but she wanted me to put my arms by my side |
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| 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.
Hi! You're doing clinical trials?! That's amazing! Go you! I haven't done any. I was diagnosed with FSGS when I was 16. It's been 10 good years of gradual decline to stage 5 CKD, and now I'm listed for a transplant. Good luck to you! I hope everything works out...for all of us :)
ReplyDeleteHey Jewel! Yeah, this is my 2nd clinical trial that I've participated in. I figure that my beans are a lost cause at this point, so I want to do what I can to help others like me while the opportunity still exists. I was always so frustrated by how few members were in all of the research I've done over the years, so I became a willing participant. 10 years, huh? How'd you do it? This journey to ESRD is so slow and drawn out...downright painful too. How are you coping? How long have you been listed?
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