Really??

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:
http://www.webmd.com/digestive-disorders/tc/nonalcoholic-steatohepatitis-nash-overview

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!!

Kate...

HAPPY BIRTHDAY

to my beautiful daughter Kate! She is 13 today!!! She doesn't know it yet but her father and I put a surprise party together. I can't wait!!

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.

It's over

So for those who read my last blog entry you know that we had court on Thursday. Everything went well, and the birth mother gave up. She was very upset and said that she was doing this for Kate. No matter what hard feelings she may have for us; she put Kate before all of that. It was a great day and afterwards out family and friends went to Cracker Barrel to celebrate it all.
The next step is to wait for 30 days; the amount of time in which the BM could appeal, and then file for the adoption date. We are all so happy...

Also this weekend is my father in-laws birthday and as everyone knows Father's Day. So we have a pretty packed weekend. Kate has been invited to go camping with her brother Jesse and his family on July 4th week end, and I'm excited for her! She has never really been fishing and it sounds like he is going to teach her. It is just awesome that they have connected again, Kate missed him terribly. I'm not sure if my doctor will be ok with me going camping or not, so I guess we'll see...

This past week I started the Carnitor 330 3x a day, so I'm anxious to see if it has helped or looks like it will. I get bloodwork done every Tuesday so hopefully by the end of the week we'll know something!

Something wicked this way comes...

As most of our friends and family knows this coming week on June 18th at 9 AM we have court. Not just any court date but *the* court date. So here's the scoop:

My husband has a daughter from his first marriage; his daughter (Kate) has lived with him and I since she was 1. The birth mom had sporadic visitation by choice (Not b/c of us or the courts) Right before Kate was to turn 3 the BM picked her up for a visitation. It wasn't the BM's weekend but it was a holiday weekend (Memorial day) and since the BM had canceled the last 2 visits we thought it would be nice for Kate to get to see her. Long story short she didn't bring Kate home. We fought her in court and finally we got Kate back. This time though she had a set visitation schedule. It wasn't a particularly nasty battle in court, but she lied a lot. But Frank and I decided to keep things as civil as possible. She still did not keep her visitation schedule, she always said she was too sick to take care of Kate. (she told us on 3 separate times she was having a hysterectomy and I can't tell you how many times her car broke down) About 6 years ago or so, she stopped calling or attempting to visit Kate. She was just gone and we had no clue where or why.

After she was gone for a few years Kate's sisters father and step-mom got in touch with us. We were thrilled that Kate would get the chance to have a relationship with her sister. From them we discovered our suspicions that the BM had moved to Florida were indeed correct, and that she still maintained visitation with Kate's sister.

Flash forward to last year. The BM started to pull some stunts with the younger sister and her father some what akin to how she played with Kate and us. Kate got really nervous because the BM kept making comments to the younger sister that she would get Kate and Jesse (Kate's older brother w/ different dad) for Christmas. Somehow Tracy got a hold of Kate's email (although admittedly it is not like we were attempting to hide) She sent Kate a forward about God, and then a few days later an invite to be her friend on face-book. Kate was really upset. No personal letters, no attempts to call all of this time finally culminated.
Kate came to my husband and I and told us she wanted me to adopt her. So we got a lawyer and that is what we are doing. The original court date was in May, but the BM showed up and said she doesn't want her parental rights terminated. Um...hello? Where were you when Kate needed help with her homework, or advice about her friends? Where were you when Kate fell off her bike and scraped up her knee? What about when she celebrated her birthdays and Christmas? And now you want to come play mother to MY daughter? No. It doesn't work that way. You don't get to walk away from a 7 year old and come back when when you want. Anyhow she showed up and made no attempt to speak to Kate, or ask to see her or call her...NOTHING. Do I think for one second she's fighting because she loves Kate? Honestly, I don't. I would never tell that to Kate, but she is fighting because she hates me. This is an attempt to hurt my husband and I. Not a mother attempting to gain redemption.

So next week is the second court date (they granted a continuance so that the BM could obtain a lawyer). I'm anxious to get this over with, she is coming up from Florida and assuming she got a lawyer will be there that day. Kate is scared about what the BM may do and has requested support from friends and family.
So please support her with your prayers and thoughts!

Up

My family and I went to see Up the other night. I won't reveal anything about it for those who want to see it, but...

I cried. Of course all Disney/Pixar movies are like that. This one was different though. This was MY movie. I wish I could explain it but all I can say is that sitting there watching the screen I identified myself with one of the characters and my husband did the same thing. We didn't even really talk about it until we left the theater. It was just one of those wierd coincidences that happen on occassion I guess.

This morning I am getting ready for a round of IV therapy in Frederick. What I really want to do is to crawl back in bed; but I know the lack of energy is a direct result of no IV's for 2 weeks. Bad Chrissy. *smacks hand*

Other than that, everything here is going well; my daughter Kate is almost out of school. My husband hasn't been feeling well lately, but the doctor prescibed some high blood pressure medicine so hopefully that will help. He has been stressed out lately with work and then more work when he gets home!

Diagnosis

At the age of 16, we realized that I had a muscle problem. My balance was poor and I was constantly shaking. So I was refered to the National Institute of Health to try to figure it all out. In July of '99 I begged them to give me something to stop my cough before I threw myself infront of a bus (LOL They didn't think it was as funny as I did!) I was getting married and did not want to be coughing while walking down the isle. So... on August 5th, I went to see a Dr to rule out CF. I went in and sat down and she asked about my childhood. Constant ear infections, constant cough, diagnosed with Cronic Bronchitis and asthma...gall bladder out at 16, idiopathic pancreatitis... I remember the dr was nodding with every one of my symptoms. She even asked if anyone had ever thought to check me for CF, my mom was with me and she told the Dr that as a baby she told them I tasted salty when she would kiss my forehead. She told the Dr that my then pediatrician laughed at her. He told her that she was paranoid, because if I had CF I'd be dying. The CF dr looked up from her noting, and told my mother that they know so much more about CF now than in 1977 when I was born. The nurse came in with a watch looking thing. I had to wear it while it calculated the salt in my sweat. So we sat; me, my mom and the Dr, she was now asking my mom about my family history and about siblings. In turn the dr explained that if it was CF (she didn't say if she thought it was or not) my life would have to change. I'd have to take better care of myself, and I would need a huge support system. She explained tune ups and their protocol meds for the adult CF study (if I wanted to be in it) Finally they took the stupid thing off and said I needed some blood work done. My mom asked about the test asnd they told us that it was positive. But the doctor told me nothing was definate until the bloodwork was back. So done to the lab I went, with the promise of a call back.
So home we went! I had to call the DJ about the wedding, not to mention firm up everything else.
August 22, Wedding day!
August 23, That afternoon I got a call that the CF dr left an urgent message for me to call her back. I didn't return her call until the next day which was a monday.
August 24, I called the dr and she said I needed an appointment. I laughed and told her that I knew it must have been positive for them to want another appointment. She didn't deny it. So I made my first CF clinic appointment at NIH and then I hung up to call my parents. My mom and dad were both on the phone and I can't remember what I said....but I'll never forget their reactions...My mom said "no, Chrissy I prayed. It's no. You don't have it. Make them do it again." and my dad just hung up his end of the phone. He couldn't even talk to me. I found out later that it was b/c he was crying (my dad is a private guy), my brother is the same way. My brother talks about CF more now than before. Actually my mom had said that if you had mentioned it before he would just walk away.
I knew August 23rd. I knew it, and that night my new husband held me while I cried. (I was actually relieved to have a name but the tears weren't for me but for Frank and Kate.) I told him he should go. For his and Kate's sake...they didn't need me hanging on. I was sicker than either of us thought I was before we got married. I would hold them back... He brushed the hair out of my face and told me, "Chrissy, don't be stupid." (I was 21; he was 26 and Kate was 2) We told Kate August 24th together. We knew at 2 she wouldn't understand, but now we could atleast give my strange illness a name now. Today at 12 she educates her friends on Cystic Fibrosis. She leads her very own team at our Great Strides, Kate's Krusaders. My two mutations are R347 P and Delta F 508.

I also have two mitochondrial mutations, they were not identified until around the same time I was diagnosed with CF. G15995A in tRNApro and A8326G in tRNAlys are my two mutations, both are rare but one is totally unique to me. Which basically means I'm floating through life with out knowing what could be next!

For those who read this though...don't feel sorry for me. Seriously. I have a great life and the BEST supprt system!

First Post

So this is my very first post on this blog! I have had quite a few blogs before, but was hoping to make a new one that would reach many. I have several parts of my life that could be a help to other people. I have cystic fibrosis, two mitochondrial mutations, and more importantly I am a wife and a mother!

I was diagnosed when I was 21, years after being misdiagnosed all of the time with chronic bronchitis and asthma. I actually got the call confirming the diagnosis while on my honeymoon with my husband Frank. I'll blog about that diagnosis next time.

Why is the title "The life and times of a mutant"; well my genetics doctor and I joked when my mitochondrial mutations were identified that I was an origonal mutant. So that is where my title name comes from. Both of my mitochondrial mutations are rare, one of them is totally unique to me and has never been seen before. So I really am a mutant, but the X men have not called me yet.