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31 August 2016 @ 07:53 am
I wanted to let you all know that daydee passed away this morning at 2:21 AM.

In 2012, she had been fortunate enough to get a double-lung transplant, but had gone into chronic rejection this year.
Current Mood: sadsad
23 December 2015 @ 11:03 am
I thought I'd update the community that a former poster, Maria (sparklesglow, murbot) passed away on November 13th.

In the time period leading up to her death, she had gone into chronic rejection and was trying to get listed for another transplant.

Breathe easy, Maria.

We didn't get a chance to meet in this life, but we had several mutual friends, and I've heard awesome things about you.

Obituary: here
Current Mood: sadsad
15 October 2015 @ 12:33 pm

I don't have CF, but I was stuck in the hospital for a week due to a nasty neck infection. In that time, I went through 20 something bags of IV antibiotics (ampicillin and sulbactam, plus a bag of vanco that made me itchy as hell), 3 IVs (and the second one BURNED while flushed or accessed), 5 rounds of blood draws, plus a bag of magnesium and a particularly nasty orange flavored potassuum drink, followed by a minor surgical procedure to implant something in my chest the day of my discharge. I came out looking like a junkie because both of my arms are bruised, and I have to take oral antibiotics for a week.

Even with my laptop, the hospital was boring as hell. I wasn't constantly hooked up to my IV, so I was allowed moments of freedom as I was ambulatory. The food was crap because I have allergies and they made me eat a low salt, low fat, low cholesterol diet.

Every day I was in there was torture. Granted, I believe cystic fibrosis patients have private rooms vs having roomates like I did. And I only spent one week there, I can't imagine spending weeks in the hospital.

This made me appreciate the fact that I was able to go home relatively quickly. And now I am even more determined to spread organ donation awareness. I used to think transplants were for old people. That changed after reading Eva's journal and watching 65_Redroses. And having a few LJ friends with CF like Justin and Nichole. I even had the pleasure of interacting with Meg a few times.

The first time I heard of CF was when I was watching The Real World with Frankie Abernathy. I did not know much about it at the time, and did not even realize that smoking and doing drugs while having CF was a big no no. It didn't really click that CF was a progessive disease.

I did not find Eva's journal until it was featured in the LJ spotlight after she had passed away but I am grateful she changed my mind and I am proud to be an organ donor. I tell all my friends I am one and that they should be one too, because transplant really does matter. And it's not even lungs that can change lives, but skin and tissue too.

I had an idea. I think MAC should release a red lipstick in honor of Eva Markvoort and donate some of the proceeds to the CFF foundation. I don't know where to get started on that though.

14 January 2015 @ 10:57 am
Hello. I haven't been on in forever, so I don't know who all still uses this.

BUT I am mildly distressed. I am going to be starting home IVs next week (not really sick just been a slow decline for the past few visits and docs and I wanna stop that). Anyway I've always just done the ball-type infusing before where it uses gravity and you just hook and go. That was very manageable with school and now work. However, now they have prescribed Zosyn which is every four hours and so the clinic nurse said they'd be using a pump for that one instead of the balls.

From a convenience and letting-me-sleep standpoint, this seems great but I am worried about portability. I can't seem to picture anything except the IV pole and pump from inpatient which seems annoying, obtrusive and just generally no bueno. I have a desk job but sometimes I need to be out "in the field" (I am a reporter) and I don't know if that will be feasible. Also we have pet cats.

So I am wondering if anyone has done the home IVs with a pump and can give perspective. The home health nurse is going to walk me through how to use the pump but until that point I could really use reassurance/perspective or commiserations and warnings, whichever is most warranted.
Current Mood: distresseddistressed
24 September 2014 @ 05:08 pm
I just thought that I would post this here, since I was (am) a friend of spirit_of_kina's on Facebook.

Kina passed away on September 23rd.

I can provide a bit more information about it in the comments in the event that someone would like it... I'm honestly no good at wording these things, though. I will always treasure the friendship that I had with her online, and she will always be an inspiration to me.
Current Mood: crushedcrushed
02 July 2014 @ 01:19 am
Technically it's Wednesday... but still.

So here I am. My first post and I am currently sitting here doing treatments. Yay... boo.

I figured, like most other chronically ill bloggers, my first post will be the story of my illness. Which seems to be the story of my life, even though I try super hard not to let it be.

When people ask about my story or whenever they find out that I have CF, I just wait for the words... "Awe, you're so brave." "You're such a fighter." "I'm so sorry to hear that." "Terminal? Like terminal? As in dying?" It's usually one of those four statements. Please understand, public, that I do not want your sympathy. I am still human, I am still living a somewhat normal life. I don't want special treatment whenever I have more than enough treatments to do in the privacy of my own home. :p

So with that being said, here we go:

I was a sickling all my life. I'm not sure if I was tested at birth... if I did, then obviously it came back negative. But as I grew, my lungs worked harder and my body took a toll. Thanks to the horrible, traumatizing memories of being sick, I will always remember my young childhood. When I was 3, I had a doctor named Dr.Danzy. He was an idiot. My grandmother use to take me into the doctors all the time since my single mother worked 2-3 jobs at a time. Dr.Danzy always came back with the same exact statement. "No need to worry. She's just a sickling. She'll grow out of it. But for now, she has (insert sickness here)."By the age of 7, I had pneumonia 8 times, on top of countless other sicknesses that made my lungs ache.

The last night of my "normal" childhood, I was practically comatose in bed with double pneumonia. I just remember shivering and blacking out a lot. I remember thinking that I was going to die. As a child, I never even thought of death or really knew what it was, but I felt weak and I just remember wanting to sleep forever but my mother kept waking me up. I remember my mother hugging me tightly whenever she got home from her 2nd job at 2 in the morning. My grandmother and my mother fought. My grandmother wanted to take me to a specialist, claiming that "There is something obviously wrong with this child!" and my mother would always fight back and say that the doctors know what they're doing. Well that night, my mother gave into my grandmother.

I went to a new doctor the next morning and got a sweat test done in the hospital. I remember walking out of the hospital and shaking violently before collapsing on the sidewalk. My mom took me out to get ice cream to make me feel better.

Finally, after a day or so, we got a call... I was positive for Cystic Fibrosis. My mom held me and rocked me back and forth as we both cried. I didn't know what was happening but it broke my heart to see my mother cry. She just explained that I was very, very sick. I asked her if I was going to die... and she said "I don't know, baby". Neither of us knew what CF was so for me to randomly have it was just weird and scary.

After a long cry fest, my mom explained it to my brothers. My 2nd oldest brother/best friend was so upset that he ran off crying. He ran away from home for a day. That's whenever I knew that my dickhead brother actually loved me. That's whenever we became super close.

So at my CF doctor's appointment, they took x-rays, blood samples, mucus samples, sweat tests, weight, height, etc. At age 7 and a half, I weighed in at 35lbs. Being a very tall child, this was considered very, VERY underweight. One cool thing came back... My right lung was scarred. I thought it was bad but my doctor looked at me and said "This is your battle scar, wear it proud". So on my 15th birthday, I got the words "Just Breathe" proudly tattooed on my right rib cage.

Since then, my health has been coming up. My pfts normally staying between 70-90%. I even volunteered for the Vertex study back in 2011. It did wonders for me, but eventually, my body got use to it.

Now here I am, 2014, age 19. I weigh 145 and stand at 5'7. My pfts are currently 83%. I haven't had a tune up in almost 4 years. But I might need one soon... My pfts have been going back and forth lately but with the help of the gym, my treatments, and my family, I'm hoping to stay out of the hospital for another year.

So there you have it. My story. I'm Katie, and I have a chronic lung disease that sucks ass!

Current Location: My townhouse
Current Mood: accomplishedaccomplished
Current Music: silence
25 May 2014 @ 02:33 am
I joined this group because i have recently lost a childhood friend of mine to the terrible CF , and she was the most inspiring person to me , I watched sixty five red roses on Netflix the other night and It reminded me so much of my friend... so i think that anyone who is having to fight this disease and trying to make the best out of it are the most inspiring people i have met....I also joined this community to help me come to terms with her passing and to sort of talk about it and meet new people thats dealing with this , and to hear there stories...Im excited to have found this community :)
Current Mood: excitedexcited
02 May 2014 @ 09:17 pm
  As I sit here on my bed surrounded by an IV pole, my vest machine, news, meds, etc.  I have one word that comes to mind, and that's grateful.  I am beyond grateful to sit here and look around and see all of my medications, inhalers, and my big bottle of enzymes.  When I was born my parents were told that I would die at the young age of eighteen.  How horrific is that?  Here is your brand new baby, but you only have eighteen years with her.  Terrible.

  When I was first born I stopped breathing, twice.  One of those times I stopped breathing for two minutes.  No one knew that it was because I had Cystic Fibrosis.  This was the 90s' and it wasn't as common back then.  Hospitals didn't check new borns when they are first born like they do now, new born screenings didn't exist.  This was a stressful time for my family.  A new born was just born who may or may not have health problems and my aunt was dying.  I was born June 25th 1996 and my Aunt Beth died June 28th.  She had neuroblastoma, a type of brain cancer.  It sucks because I didn't even get to meet her.  I would never know how she looked in person, hear her voice or her laugh, etc.  When everyone went to her funeral I was at home with my moms best friend, who I now consider an aunt, and my grandma.  They were looking after not only me but my monitor that I had to be put on.  I was on it for a while, longer than necessary because of my worried mother.  It was kind of like I security blanket for her I think.

  Months past and still no answer.  My parents were being told, multiple times, that there was nothing was wrong with me.  They eventually were told that I had epilepsy.  To make a long story short, the doctor that I had tried to drug every baby that he saw.  That theory was out.  Around Christmas my parents, in the middle of the night, took me to a different hospital.  When I got there I had lost weight and was in respiratory distress, receiving breathing treatments every two hours.  When a resident came in to see me he suggested doing a sweat test. Yes, you read that right.  A resident.
Sure enough it came back positive and I had CF.

  Even though I was just a baby having to go through all of this, I have been told by my family that I was the happiest baby around.
My mom loved the camcorder (as they called them back in the day) and literally taped my move.  I was caught on camera, a few months old, throwing up and then laughing.  I threw up and laughed right after.  Who does that?!  Overall I was a happy baby.  I mean whats not to be happy about? I was breathing and that's something.

  Now I'm 17 with a lung function of around 44%, still going strong.
I'm hospitalized often or do home IV's, but I can't complain.
I don't require oxygen at home, I can still attend school, and overall I'm relatively normal.

  Basically I'm just a 17 year old girl that has a bit of a harder time breathing than others, but that's ok.  It makes me appreciate the little things.  I'm currently attending high school as much as I can.  I don't do any extracurricular activities because frankly, I'm your average lazy teenager who would rather stay home and watch Netflix, yet somehow still wants to make a difference in the world.  My favorite color is purple.  I enjoy sports, but I don't feel like it's a good idea to play them because I am too clumsy for that.   As of now I want to attend a college somewhere in Indiana to get my journalism degree and after that make my way out to california and then of course, make a difference in the world.  That's really all I want to do.  My true feelings about school is: It isn't everything.  Sit in a room for hours and try to learn or go out in the world and live in the short amount of time we have?  My biggest inspiration is a guy named Chris McCandless.  He was amazing at school and once he graduated he said the hell with society and went and lived (and died) in the wild.  Perfect.

  I'm not your average person with a disease.  I'm not a inspirational person or excelling in school or something like that.  I'm merely average.  I don't really know why I made this blog or whatever this is.  I suppose I did because I'm an uninteresting person with nothing better to do than tell her life story.  And maybe if you're reading this and you're uninteresting too then you should follow along. 
Current Location: Home(:
Current Mood: indescribableindescribable
Current Music: Elton John
07 May 2014 @ 08:36 am
Hey there (anybody who is still here)...

By request ofmorelikeherself I wrote up a blog post about my experience doing yoga with CF.  I'm always continuing to learn so if any of you have any insights to share about your own experience, I would love it.  I've just been offered a job teaching a regular yoga class (up until now I've just been subbing), and the wider range of knowledge I have about people deal with injuries or chronic disease, the better.

My blog post is here: http://katiemalik.com/2014/05/an-faq-about-yoga-and-cf/

OH - I also made my professional operatic solo debut last fall, so that was a pretty cool accomplishment for me and for team CF!

(crossposted to personal journal)
13 November 2013 @ 06:24 pm
making New friends with other Cf parents .