CF Firsts...

Alright, so I read two blogs that I have seen this on and thought it would be awesome to share with my friends and family!

My First . . .


Diagnosis- 21 years old. I had a positive sweat test but the doc wanted to be absolutely sure. They called with the blood test results (kinda, they wouldn't tell me over the phone) the day after my wedding.


CF Doctor- The same one since I was diagnosed, Dr. Churnick. Head of the Cystic Fibrosis Clinic in the National Institutes of Health (NIH) in Bethesda, MD


PFT- I'm pretty sure it was before my DX, when I was 16 or so. I did a lot of test in an effort to DX my muscle disease.


Nebulizer treatment- I was young...maybe 9? I was DX'd w/ chronic bronchitis and asthma as a child.

Vest treatment- 27

Dose of Pulmozyme- 27


CF Sibling: None


Non-CF Sibling: Pete; my last entry was all about him!


"Clean out": My first Tune up/Clean out was right after my 30th birthday. My doctor was very happy that I made it to 30 before needing one. My PFTs had droped to 77%, they had always been in the 90's or above. It's ironic because now my base line is low 80s, high 70s...


Bad memories: Vomiting, sitting on the cold bathroom floor in tears alone, because everyone in the house was asleep. I didn't like to wake anyone up, so I sat in there alone--sometimes in the dark so I didn't wake anyone. (This actually happened several times until they figured out a had gall bladder issues/pancreatitis) My mom woke up when she heard the bath water running. It always made the pain better, or maybe it just relaxed me to be in a hot bath. I'd only be in it for 15 or 20 minutes before the pain would come back. Then I'd put my pajama's back on and my mom and dad would drive me into the hospital. They NEVER figured out what the problem was.(until I got away from my pediatric doc and started seeing someone else. She said gall bladder and sent me to the best GI in town, he was amazed I was only 15. The next time this type of thing happened my mom called him at 3 in the morning. He met us at the hospital and told them to check my amylase and lipase levels. The were so high...he stood there with his mouth open staring at me...)


Good memories: Any with my daughter in them!!!


Real Friend- When I was in kindergarten I made my first real friend (non imaginary). Carlolyn Coelho; sadly we have lost touch over the years.


Dose of Tobi- Durring my first tune up I had an IV of Tobi, but I have never had the inhaled Tobi (tobramycin)


Read: "One Fish Two Fish", as a tween it was "Are You There God, It's Me Margaret."


Started thinking about mortality: I think I always thought about it. But I started to think about my own at 15 and was fixated on it for a while.


Started realizing I'm gonna live through this chapter and then the next one too: When I was DX'd at 21, I couldn't see that but gradually afterwards I realized I could make this work. I realized I had to.

First loss: CF related it was a girl I had only made a few comments on her blog and didn't really know. Her name was Debbie, the first CF death that hit me hard...

First time I really remember FEELING sick: It is one of my first memories as a toddler. I guess I was 3 or 4 and I was laying under the Christmas Tree holding my ear. (Ear infection) I recall thinking that Santa was coming and he would made me feel better.



First hemoptysis: Not happened yet

First major bleed (later diagnosed as Pulmonary Endometriosis): None

First home IVs: Never had them, we have an IV center that my primary dr likes to send me to


First home IVs with no hospital time: None yet


First time I freaked out about my fertility: I never had a problem getting pregnant. Just one staying that way. It took 5 miscarriages for the doctors to figure out that I had a blood clotting problem as well, my blood clots too much. At that point I made the decision that with my medical history and terrible genes, and the fact that Kate needed a mother who wasn't going to come and go but one who would stay around...I had a tubal ligation.


First time as public advocate for CF Adult issues: Battle for The Cure, Amtgard. I think I was 24?


First time a relationship changed dramatically during/immediately following big changes in my health: 21, I was DX'd right after my wedding. I told him he could leave since it would only get worse and he said, " Chrissy, don't be stupid." He still tells me that!!

First time without health coverage: I didn't have it when I was a kid which could be why I was DX'd so late. Luckily I am in a life time study for adult CF patients at the NIH, so even if I loose insurance I won't loose NIH. All my meds are free, except for extras from my primary and my GI. My tune up was paid for as well.

First PICC line: Have not had one yet

The First time it hit me: 23
When I was DX'x the only part of CF I understodod was the dying part; then with no time to stop reeling from the news...they told me I had two mitochondrial mutations. After a little while it hit me that I had two progressive disease and I educated myself about them. One effected my lungs and digestive sustem and the other would more than likely take my ability to walk one day and possibly more than that.
I had a choice; I could sit around and be angry and feel sorry for myself or I could teach my daughter and others around me that no matter what the odds are you can deal. These diseases will probably take my life. I know that and I'm OK with it...but no one will say that CF beat me, or that "I lost a battle"...no way.

My Brother...

His name is Peter James, and he is four years younger than me. He does not have CF, he is just a carrier of the D F 508 gene. He has a few health issues of his own, but all in all he is healthy.

He is sweet and kind, he has a good heart and sense of humor. Pete is a caring guy. He works hard, and when he isn't working he is doing things for our mom and dad.
Pete worries about me a lot; although he won't tell me he does. I know it, I can see it when he looks at me and I can hear it when he talks to me. I can usually tell with most people; a talent I picked up a few years after my diagnosis. He lies about things to protect me, nothing big...all small little white lies or not telling me everything...but I can tell when he does it. Again it's a talent after years of dealing with doctors concerning my unknown mitochondrial mutation an CF. However with him I think I know because, we are connected.


I don't know if he read's my blog...but that's ok. I'm not really writing this for him, or for me. I'm writing this to tell those who read how lucky I am to have him for a brother. Sure he electrocuted me...twice; and yes he flushed my My Little Ponies hair brushes and ribbons down the toilet; no doubt he hit me over the head with a Tonka truck; and he totally hit me in the head with a wrench and a mop too. I can imagine the list of things I did in retaliation or to start the fights were just as rough! HAHA!


He is a great brother, and I could not ask for a better one. No matter what mistakes he has made or will make he will always be my little brother.

I figured that I'd blog about him today because I'm sick of blogging about me! I don't have any news anyway!!

Would I choose CF?

I read a blog called runsickboyrun.blogspot.com



The question was, "Would you choose CF?" I'm going to post a link to his blog response because it was amazing.

http://runsickboyrun.blogspot.com/2009/07/i-would-choose-cystic-fibrosis.html



Before I was diagnosed I was a different person, I think. The birth of Kate changed me, made me more responsible and made me less bitchy. (LOL) When I finally got the diagnosis; I feel as if I shut myself away. Went into a cocoon so to speak: I picked fights with the people close to me, and I didn't take very good care of myself. I was depressed a lot. It took me a while but when I "emerged" I was different. When I did, I had a respect for everything; nature, life, my family, my friends and myself. I started to be more understanding with people who had different opinions than me, started to pay more attention to the world, and really looked at myself as a person. I became the mother I knew my daughter needed, a better friend...it all made sense to me. I appreciated everyone around me; all the plants and trees--the blue skies and the gray ones as well.


Sure I still have depressed days. Sure some days I wake up and wonder why me...we all do. But would I change my life and give up what I have now to be born healthy? No. I regret nothing. I don't want to go back and change anything. Cystic Fibrosis shaped my personality and life...the crappy part but most importantly all the good parts. I'm still working on me...being compliant... not pushing myself... being a positive influence... taking things at a slower pace...



I guess that this question may depend on the day you ask, because some days I wish I was healthy. Not for me but for all those around me who suffer because of my illnesses. But today is not one of those days.

IV center; here I come!!!

So yesterday my hubby had his doctors appointment; we have the same doctor so he asked me to go with him. He has trouble with doctor speak...
We are sitting in the room and she comes in. She looks over at me and says, "I can't believe the IV center wants me to admit you." I nod and say "yep. I'm fine with being admitted...I feel like crap." Then my doctor explains that FMH and every hospital have viruses and bacteria that run wild and she doesn't want me exposed to it because my immune system is crap. I mean I know those bugs were there, I'm very aware of the crap floating around at the hospital. But it just never occurred to me that she would be afraid to admit me. I don't know why I didn't think of that reasoning. I feel so dumb! So it looks like I get to spend the next two weeks at home. Resting...Blah...how do I do that!?! LOL (she is in talks with the IV center to get me back in next week, but the isolation would be for my protection...)

Frank got his test results, a prescription, and then was off to Rose Hill for his CT scan. I'm not sure what happened but he went in happy and came out a bear! We think it was some sort of reaction to the contrast dye. Neither of us are sure, but that is the only thing we could think of. When we got home he worked on the website for a bit and then took a 3 hour nap. He was so upset that he was so tired. He wanted to work on Shot stuff all day since he had off to get his scan and see the doctor. But I made him take that nap, I was afraid he'd fall asleep at the computer!

Kate and her friends (Molly and Bethany) are in the other room playing Rock Band. It's nice to have them here; they are good kids. But don't tell them I called them kids. HA HA! I'm trying to convince them to be a chick band. LOL Molly is drumming and Kate is the guitar and Bethany is singing....they aren't half bad.

Tonight I am planning to make a beef roast for dinner. This will be my second attempt at a roast that Frank will like. He is not a beef person, unless it is ground up or chicken fried! He choked on a piece of steak years ago...and it scared him for life.

I'm off to rest...whatever that is...

Well...

So today I went in for my IV therapy. My doctor told me yesterday I would be fine to go in, although in truth I was not sure. So I did as my doctor advised and went in. They couldn't treat me. They sent me away. Apparently the Frederick Memorial Hospital infectious disease control says I need to be in isolation!

"Before the blisters are crusted over, the virus can be spread to anyone who does not have immunity to chickenpox through vaccination or previous infection. " (http://www.medicinenet.com/shingles-rash/article.htm)

All of my blisters are dried up and scabbed over. They are not oozing, it is covered up on my back and under my arm...out of sight... But the nurses have to do what the FMH infectious disease people say. No matter how dumb. Oh and no one even looked at the rash. Not a soul, so I'm not sure why the conclusion could be made that I would need to be in isolation. But whatever...

They did not give me the name of who it was that said I need isolation. So they sent me to my Dr's office. I go in and my dr is not even there! So I sat and waited...and waited...and then my dr came in and said she would see me. HUH? Just admit me so I can get the IV's!

I'm totally freaked out about what she said yesterday about my immune system. About being at a higher risk for certain things...so why would they make me wait? I'm so upset right now and my pain meds just don't seem to be helping much.

So she says she'll see me. FINE. So I wait and wait....and wait and wait....finally I wrote her a note apologizing for being a problem. I just asked her to call me today and tell me what to do. I would like to be admited so that I can get my IV's as they are uber important right now.
But right now I get the feeling they'll just tell me to rest at home for 2 weeks!!

My doctor always uses the analogy of a car and gas. She says I am the car and right now I'm on E, just barely hanging in. If your car runs on E constantly eventually it starts to cause damage.
The vitamins, minerals and lipids are the gas and it just goes out just as quickly as they put it in.

So what happens when I run out of gas completely?

Say What???

So last Wednesday I got a rash in the middle of my back. It was a little itchy and sore, but I thought it was poinson ivy. It had little blisters and after 5 days of peroxide and calamine lotion, it was still the same as it was in the begining. So I saw my mom and dad on Sunday and they looked at this rash. They said, "Chrissy that's not poison ivy, you have shingles."
Say what mom and dad? Shingles? Huh?

I know what they are; I just didn't expect that was what I had. So today I went in to see my doctor. She took one look and was like, "yep. That's Shingles." That wasn't all she had to say though. She gave me prescripts for pain and for the virus itself. The whole time she was a FLURRY of activity. Upping my dose of multi vitamins at the IV center, entering things into the computer, asking my what seemed to be random questions...then I recognized a few of them and it dawned on me as she pulled up my blood test results. My vitamin levels have basically gotten so low--I have no ability (or it is a weak one) to fight off infections and such.

She explained to me that her flurry mode was because I can't fight stuff off...my vitamin levels are so low...and then she mentioned the C word...

Say what??

I don't have cancer; but am considered at risk; and if I do develop it...I can't fight it off. I'm not planning on bringing it up to Frank right now. He has a lot on his plate, including his own medical problems...The C word would just scare him like it did me. There is no point in that. I just have to take care of myself...resting, drinking lots of fluids, and not missing IVs.

Labs from 6/30/09

So I went in for IV therapy today and got my test results from the 30th. I have to laugh now when I get them...I think my body is in a constant state of flux.

Vitamin K went from 3.6 to 3.9; up is good! lol
Morning Glucose was 82
Calcium was 8.9 which is the same as it was before. If it doesn't go down I'm happy.
AST the 23rd it was 120 and on the 30th it was 156...
Gamma GT last time was 86 and on the 30th it was 106
ALT was 110 and went down on the 30th to 103
CK has gone up from 1165 to 1690
Cholesterol has dropped again! This time I am at 73. hdl dropped to 12 and ldl is at 44
Bun/CREA 8.6
Vitamin B12 652.6
Vitamin B2 listed as repeat test needed again?
B6 dropped to 11
Vitamin C is listed at .13
Vitamin E 3.9
Apolipoprotein A1- 77

Oh they have been checking vitamin d too, but since it doesn't come back flagged I hadn't noticed it. Vitamin D 1 is 20 which the lab says is low.

Other than that everything has been going OK. I'm getting better about saying everything is fine, or good...but its been baby steps. I just never think people want to hear me whine. lol
Over the weekend we went to a good bye for now party for my best friend Jessica. Her dad is really sick and she is going to stay with him in Las Vegas. She says she isn't planning to stay...I really hope not. I lost touch with her several years ago; so even if she doesn't come back...I'm not letting that happen again.

On my way home from Iv's I heard a song that makes me think of Frank and how hard it is for him to be married to someone who is sick. It's by Rob Thomas and it's called "Her Diamonds"

http://www.youtube.com/watch?v=anlM631RsoQ

More labs...

Vitamin K went up from 3.4 to 3.6, which brings me to just above normal
Morning Glucose was 101 this time
Calcium was 8.8 and has gone up slightly to 8.9
AST last time was 181 and the 23rd it was 120
Gamma GT last time was elevated at 92 but has dropped to just above normal range at 86
ALT was 84 which is an improvement from 110.
CK has gone down from 2762 to 1165 on the 23rd
Cholesterol is still 76. hdl went up from 5 to 14 and ldl droped from 56 to 43
Bun/CREA 8.3, down from 10
Vitamin B12 was 625.7
Vitamin B2 listed as repeat test needed.
B6 has continues to trend upwards and was 18 on the 23rd.
Vitamin C was .47 but droped to undetectable again at < .12
Vitamin E 3.8 down from 4.8
Apolipoprotein A1-80

So my cholesterol hasn't improved but it hasn't decreased again, which is good. My CK has dropped but so have vit c and e...

What can I say? Really not much. I am always so freakin' tired now, not that it is new. Thats been going on for a while. I just hate to show it. I don't want my family to remember me as lazy and no fun...lol...I am at least fun!