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

Tuesday, June 30, 2009


Okie dokie...so for those of you that read my last set of labs; they were from the 9th. I got my results from the 16th today:

Vitamin K was 3.7 which was barely within the normal range listed. These results came back this time at 3.4 just under the normal range.
Morning Glucose was 105 before breakfast and this time it was 135 before breakfast. The 135 came back marked as high this time...not really sure what that means! HA!
Calcium was 8.6 on the 9th; again just above the labs "normal range" and on the 16th it was 8.8
AST last time was 124; well above the normal range of 10-40; and on the 16th it was 181.
Gamma GT last time was elevated at 136 but the 16th it was 92. Which by the way is slightly higher than the normal range. So yay for improvement!
ALT was 124 on the 9th; and this time it was 110. Again yay for improvement!
Alright this is the biggest disappointment for me. My CK level last time was 1516; normal range is 21-232. Elevated yes but two weeks prior to the 1516 it was 2064 or something around there...so it went down; which is good. This number coincides with my muscle pain level and fatigue. So when I say that I pratically burst into tears when I read that the 16th I was at 2762...
It always freaks me out a little to see the numbers; even though I new my pain had gotten worse I casually put it off as pushing myself to hard for Kate's surprise birthday party...guess not, huh?
Next to update on is my second dissappointment. My cholesterol. This time my result is....drum roll please...76! Yep it has droped from 83 to 76...my hdl dropped from17 to a woping 5, while my ldl went from 48 to 56. I started a new medicine that we hoped would help me absorb fat and transport it properly...so far it doesn't seem to be doing much.
Bun/CREA went up from 7.5 up to a 10
Vitamin B12 was 631.8 and has gone up a little to 628.7! (YAY)
Vitamin B62 was a 13.6 on th 16th which has also gone up from 7.8
B6 was < 2 on the 9th but has improved to be a 5. (YAY)
Vitamin C was low but has risen up to be within the normal range at .47...yay!!
Vitamin E has improved to just below the normal range at 4.8
My Apolipoprotein A1-78 went down a litlle bit more to 69

My vitamin levels have all improved a bit...except for my vitamin K; so I'm hoping they continue to trend up. Today I had an appointment with a new GI doctor and he is planning an endoscope and a colonoscopy so that he can biopsy my tissue (Esophagus, intestine and stomach) to attempt to discover what is causing the malabsorbtion. He is also worried about my liver and for the second time in three years someone has thought that I have NASH (Nonalcoholic steatohepatitis).
So he also wants to review all of my liver tests from the last 5 years and he is talking about a liver biopsy...I hope he changes his tune because I do NOT want one of those! LOL
For those who are unsure of NASH check out:

So for those of you who are wondering how I'm feeling today--I could be better. But I'm not going to complain...
My husband went to his new doctor today too, and he seems to really like her so far. My daughter is planning a camping trip with her brother next week; and she has been supper excited about it! My car blew a tire today, on my way to IV's this morning...But I made it in with out being stranded on the side of the road! So today I am just thankful for the small things!!


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  2. My brain is all mushy sleepyness and I fubared a lot in the last comment, so I deleted it. lol.

    Chrissy, I feel for ya. Being a medical mystery can't be easy. If you need anything, even to talk call us. I was thinking maybe sometime in August of doing our ninja night.

    Also, Mary, Lisa Dulin, and I want to go camping - but in a cabin with working water/toilets and beds, sometime in August. Maybe you guys would want to join us?

  3. Chrissy,
    There is one thing to be said, the doctors are taking you very seriously. You have some of the most intelligent people in the medical profession putting you under a microscope. Only good things can come out of that.

    Awesome about Kate and Jesse's camping trip! That will be great for them! I'm glad Kate is able to bond with her siblings so well. I'm glad your tire blew when help was available. Sometimes people are quick to say that our guardian angels were napping when those things happen, I say no way! It could have happened in a much worse place! I think you have a crew of Guardian Angels watching over you night and day including your grandpap.