Monday, March 4, 2013

On a better path...

I met with my PCP last week and was able to ask her a bunch of questions.  She switched my Xanax prescription to another drug (that's name completely escapes me right now) due to some of the potential addiction issues.  I'm glad she's actually looking out for me, and it was a much easier conversation that I thought it would be, so I'm glad I was COMPLETELY wrong on this one :)

Last Thursday, I got a call, and I saw it was from Mayo.  I couldn't answer it at the time, but I checked the voicemail later and it was Dr. Fervenza.  I can't tell you what it was, but I TOTALLY felt like I was in trouble...like somehow he knew what I wrote previously.  And then I thought I was just being ridiculous.  However, I wasn't wrong.  I called him back later that day, and he flat-out asked me if I was unhappy, and I told him that I was.

It was an interesting conversation, but a good one, and I'm glad it happened.  There's been several mis-understandings along the way, and I was able to clear up some of them.  Por ejemplo...remember the last time I was at Mayo back in the fall, and I was told that no one would transplant me?  Well, that's true, at least for right now, but that's because my kidney function is too good!  Yeah, I know...it's all a bit confusion, but it's measuring around 70% right now, and that's just amazing.  When I need it, I WILL be able to get a transplant, but that could happen next year or 5 years from now.  I'm just happy to know that when I need it, I'll be able to get it, so WHEW!

And I'm glad it happened because I was able to tell Dr. Fervenza what it was like for me, being a patient with a disease that may not be life-threatening, but is completely life altering.  I talked to him about the fact that losing 23 pounds in 5 days does not feel like a good thing when I have no idea why it's happening.  I told him that I need to understand things in order to feel as though I have more control of them...and you know what?  He got it.  He totally got it.  And I'm forever grateful.  I have the utmost respect for a doctor who is willing to take the time, call me out on the things that I say, and get to the bottom of it.  The fact that he even cared enough to try is, in and of itself, wonderful.  I'm just very happy about how it all turned out.

Yoga is going really well too.  I love it.  I feel absolutely spent when I'm done, yet exhilarated at the same time because I finished it.  I haven't been able to go in a few days, and I'm aching to get my sweat on.  Keep your fingers crossed for me that this winter storm we're having right now will be over before class tomorrow night :)  My weight is going back up again, after being at an all-time low last week, but I've also been completely addicted to pickles lately.  This isn't really a new addiction, but sometimes it takes over and my willpower is weak.  I'm back on track again though...

4 comments:

  1. I am so glad Dr. F called you & you figured some stuff out! That's awesome! You sound like you're in a good place. And you're hilarious - pickles?!?! lol

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  2. I am really relieved to hear that you will be able to get a transplant when the time comes. That was eating at me, since I know more than one person who had FSGS that got one, including me of course. It seemed so very unfair!

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  3. I was just circling around to comment on your last two posts when I saw this - such great news, Jenn. Open lines of communication are really important - does the doc read your blog?

    I got my update today - Createnine to Protein ratio is 1.4, which is basically no change. I can't find what it should be if I was normal, but the doc used the word "remission" today for the first time... For now I stick on just blood pressure meds, which is good news for me. Next step will be prednisone I fear. I hate that stuff!

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  4. If it weren't for yoga, I'd probably be in prison. :D

    You're doing the right thing! Keep talking to the doctor. I have learned the past few years that I have to be in people's faces in order to be heard, because they don't have the time to seek me out.

    XOXOXOXO

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