Well, folks.....LOTS of things have been happening this week. I can't tell you yet, and it's totally unrelated to my kidneys, but it's potentially great news.
On the health front, things don't seem to be going too well. At my last Mayo appointment, Dr. Fervenza noted that my Cpk value is quite high at 240 (normal range is 38-176), which puts me at a high risk for rhabdomyolysis. Here's an explanation of what rhabdomyolysis is. Essentially, more muscle wasting. And I'm worried that it may be happening. The last week, I've noticed that my muscles are MUCH weaker than normal. It's difficult right now to hold my arms up and type this...THAT'S how weak they are. And my left calf muscle feels as though I pulled it (and I haven't been physically active enough lately to pull ANYTHING). We cut my Lipitor in half, as statins can make it worse, and my doc advised me to stop taking it immediately if I noticed muscle pain. I don't notice pain as much as weakness, but when I put the weakness with the calf muscle pain, and started researching, I'm thinking I better call the doctor and send him a message via their system. And I'm sooo freaking shaky...not just my hands anymore, but other muscles are twitching all the time. And my balance is completely wonky. I haven't fallen over yet, but there've been several times recently when I thought I would. I took a video of my hand shaking, but my video host is currently experiencing delays, so I'll have to post it later.
It's so damn frustrating. I want to be active. I want to be healthy. I want to be normal.
Okay, now for some good news. I got another mentee with the NKF, and she's AWESOME! Soooo much like me personally, and in the very early stages of kidney disease. I think we talked for 2 hours the first night! Anyway, I LOVE to help people when it comes to CKD, because there's so much info out there (and not all of it good) so I'm thrilled to have the chance to help. My other mentee is doing well too...she's stable and she's started volunteering, so that's INCREDIBLE!
I also got in touch with the local NKF, which is quite active in the area and on Facebook, and hope to meet with them next week to start volunteering. Plus, the wonderful ladies in our Facebook group have started working on a way to help others like us that don't have the emotional/physical support that's needed (sadly, it's more than you'd realize), so I'm going to see about working with NephCure to see what we can come up with.
AND I've started seeing a therapist. The first appointment was this morning, and it was great. I can feel the "snippy-ness" taking over sometimes, and I just think that, generally, it's good to have someone to talk to that's COMPLETELY out of the picture...to provide some perspective and some coping mechanisms. I like that one of the things she specializes in is chronic illness, so she already "gets" it. And let's face it...things are probably going to get worse before they get better, so it's important for me to be prepared to face whatever's headed my way, and I'm confident that she can help. We really clicked, and that's paramount.
I gotta be honest....I don't feel much like posting here lately. So many times I start writing the post kind of "in my head"...
It's been a long time since I posted here....I'm not going to even try to catch everyone up, so let's just dive in, ok? Anyo...
I met with the vascular surgeon yesterday and things are moving quickly. I've got a revision surgery scheduled for this Friday morning....