Tuesday, May 22, 2012

So here's what I'm dealing with today : FSGS Sucks

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.


  1. Hugs Jenn. Rhabdomyolysis, super weakness, shakes, plus the usual tired equals double suck! My next appt w/ Dr F is at the end of July. I'll look up the date on my work calendar and message you & Julie. Hope I can meet you girls! Yay for the therapist. This is a shit ton to process, and I hope she can help!

  2. Ugh! Don't take statins. They killed my grandfather, seriously. He could barely get a fork to his mouth, because his muscles deteriorated so much. I was also put on one (vytorin)and had the same problem. I couldn't brush my hair or teeth without feeling like my arms were going to fall off. I was told to stop them as soon as those symptoms started. Evil evil evil.

  3. I'm glad you are seeing a therapist - which is not my way of saying that you are crazy. I think you have a lot of shit going on, and having someone to unload on that is not living with you is a good thing. Just saw the shaky hands video - eek. Get that fixed!

    (I've taken statins in the past without these issues - they effect people differently.)

  4. Rhabdomyolysis is no fun.....I was just hospitalized for it because simvastatin and cyclosporine wreaked havoc on my body. My cpk level was 20,000 which is crazy high.....slowly it came down each day in the hospital and the day I was discharged it was around 2,000. I was unable to get up by myself, let alone feed myself. The doctors ended up taking me off both medications and I can finally get up and go to the bathroom by myself. My last blood test I was down to 267.

    I'm glad your doctors are cutting back on the statins. I hope you feel better. No one should have to go through what I went through. I wouldn't wish it on my worst enemy.


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