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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Tuesday, June 23, 2009

Are you kidding me?

So...today at IV therapy I asked for a copy of my most recent test results. I had blood work done last week, but they say none of it is back yet so I called my primary to see if she has them. I guess I'll save this post until I hear back from her.

Labs from 6/9/09

Vitamin K- 3.7 according to the lab it is barely within normal range (3.5-5.1)
Morning glucose (before breakfast) 105 (not sure if that is good or bad!!)
Calcium-8.6 also told by lab it is just in normal range (8.4-10.2)
AST-124 normal is 10-40
Gamma GT-136 normal is 5-85
ALT-124 normal is 30-65
CK-1516 down from the last number which was like 2064 or something normal is 21-232
(CK is the number associated with my muscle problems. They are almost always checking...I haven't gotten the results from last weeks blood work but am hoping that it is continuing to trend down. ALT AST and the Gamma GT all all something to do with my liver. My numbers have always been a little elevated; they think it has something to do with my CK # being high also...but as with all things Chrissy they just aren't sure.)
Cholesterol- 83 normal is listed as anything below 200. However this # according to my doctors is too low. Go figure. 83 is up from 80 which is what it dipped to last month. Keep in mind that I am receiving IV lipids too raise it.) The breakdown is LDL 48 and HDL is 17 (hdl should be above 40)
BUN/Crea-7.5 normal is 12.5-18.7
Vitamin B12-631.8 normal is 239-931 (YAY)
Vitamin B2-7.8 normal is 6.2-39.0 (this is improved from my last blood work)
B6 <2 normal is 2.1-21.7 ( This one is always a struggle for me to maintain.)
Vitamin C- <.12 normal is .20-1.90 (this result is up from my last test...before it was undetectable)
Vitamin E-3.3 normal is 5.7-19.9
LDH-349 normal is 100-200
Apolipoprotein A1-78 normal is 101-198

So I have been getting IV therapy for months now, and a few weeks ago started going in 3x a week instead of 2. Why am I doing it? Well because if I don't get multivitamins and lipids directly into my blood steam; everyone is scared of what will happen. But really...it isn't making much of a difference. I keep getting my blood work results and hoping; praying that the numbers will be great. They should be...not only do I get IVs but I take a multi vitamin 2x a day extra B6, C, D, E and B complex(100). Can someone please tell me what the hell I'm doing this for? Why can't they just FREAKIN' FIX ME???

I am so sick of feeling like it's not fair for me to ask for others to adjust because I don't feel well...but apparently NO ONE (except my husband and a select few) cares about whether I adjust for them. At least that's how I feel.
Oh...I just got a call from the Dr's office and they are giving me a prescript to try to bump up my vitamin E...

Sorry for those who aren't used to me whining...lol...I do it a lot on my blog on cysticfibrosis.com; or at least I did. My husband says I need to stop telling people I feel fine or ok when they ask how I feel. So here it is guys...for those who want to know how I feel right now, today....like crap. I feel like crap.


  1. Chrissy,
    I agree with Frank. When I ask you how you are I want to know how you really are. I wish there was something that I could go to fix everything for you. Who are you going to talk to about the pump? I am sorry that you are feeling so bad. I am thankul for the update. If there is anything we can do let me know.

  2. It's okay to say when you feel like crap. Everyone talks about feeling like crap. Strangers who pass you on the street and say "how do you do?" are going by rote conversation cues. The rote answer is, "Fine, thanks." Those are strangers. When you friends say, "Hey, Chrissy, what's going on? How are you?" DO NOT feel obligated to say "Fine, thanks." We love you. Many of us feel utterly helpless and don't knwo what to do because we don't know what you are experiencing. It sucks to be you, every day, it sucks.

    I pray for you every day. I think about you all of the time. Scott and I love ya and send good vibes. I wish we could do more. There is still hope that they will find the magic combination and get this right. And you have a personal blog so WHINE AWAY! It's your American RIGHT! If people don't want to see it, they don't have to read it. Right?

    Chrissy, we love you!