Layers of Lasagna

My life right now has consisted of layers falling right into place, gradually making the perfect masterpiece.


The First Layer being the foundation. The part that balances all the ingredients and makes it sturdy. That being my fiance and the day that he proposed to me on 10/10/10. I felt like the luckiest girl in the whole wide world when he proposed to me at the Morikami Japanese Garden. I must have shook my head so many times it was though I was a little bobble head doll and of course said the magic word "YES" followed by times infinity. It was the most magical day of my life and it is forever stamped into my mind. I don't know how I could have been so lucky to find him. To me he is that four leaf clover that you only stumble upon once in a lifetime. I'm floating on engagement bliss right now!

The 2nd layer- The saucy, meaty, cheesy goodness was when I was told by my doctor that I was going to have a respiratory therapist come over to do chest physiotherapy on me everyday in the morning. I feel so spoiled because I've never had a specialist come to my home everyday before just to beat on my lungs. Mainly old school chest PT could only be done when I went into the hospital. As a child, my mom would clap/beat me on my chest to help get up the mucus but as I got older it became of course harder for her to do. The Vest or flutter became my form of chest physiotherapy but nothing compares to old school chest physiotherapy done by a professional. Before my respiratory therapist came into the picture my fiance would occasionally beat me and it was acceptable lol. But it's nice to give him a break and let a respiratory therapist do all the work. :) For 45 minutes every day in the morning my therapist beats me and I love it!

Third layer- After 6 weeks of intense I.V. therapy I had the line pulled! No more PICC line and I'm so happy to be free! It's not the PICC line part or the hospitalization part that I hate the most. It's more of the feeling like I'm on a leash and my CF is the thing that's holding me back. It's that reminder that as many times as I try to run free, it catches up to me. My FEV1 is back up to 51% and is staying stable. I'm just praying that I won't fall back again. I'm feeling amazing and free of infection. Although, I still have the abnormal production of mucus which is part of having Cystic Fibrosis. Unfortunately, the I.V. med's can't get rid of the mucus. The I.V. meds just clears the infection so that I can have the energy to work hard every day to clear the secretions out of my lungs and helps to create less mucus production. Creating a snowball affect of good times. A part of me did not want to get off of the I.V. meds because once getting a taste of having less peanut butter thick mucus production, clearer airways, less inflammation, breathing easier, more energy.... trust me you wouldn't want to give that up in a second! But I knew that I couldn't stay on the hardcore antibiotics forever because in the long run it's not good for the other organs in the body...ZONK!

Forth Layer- I have made a goal to run a half marathon in which I'm currently training for. I know you would think someone with 51% lung function(practically half a lung) running a half marathon is nuts. But it's just my can do attitude right now and I'm sticking to it. As I've been training my right lung has been giving me problems causing pain. My right wussy pants lung needs to learn that I'm going to accomplish this goal and needs to join the can do party already! I'm super excited and I can't wait to check it off my bucket list!

Fifth Layer- Sauce, Cheese...and more Cheese. I'm involved right now in an Ataluren/PTC124 clinical trial. This drug trial is for CFer's only with a rare mutation or properly defining it as a nonsense mutation for all you science nerds out there. :) I have one Deltaf508 mutation(90% of CFer's have this mutation) and one W1282X mutation(rare/nonsense mutation). There are many, many different mutations of Cystic Fibrosis. That is why every case of CF is different. In a short explanation, basically this drug will psyche the W1282X mutation that I have into believing it's "normal" and making it function properly causing less thick mucus production, easier breathing, and fewer hospitalizations. This is the scientists trying to get closer to a cure, getting down into the cellular composition of it all. If it works, it will be a huge breakthrough. In past phases there was an increase of lung function in patients. I have to take the powdered form of the drug, mix it in water, and drink it three times a day. I'm hoping for high numbers and no double heads! :)

Everything perfectly baked to perfection....

Golf Balls

I'm finally home. Happy. Stress-free. Surrounded by my two loves (my boyfriend and dog). I'm able to finish up my I.V. therapy at home and get the best sleep in my own bed. I couldn't ask for anything more.

A couple of days ago I read the best chain mail. I never really forward the mail out but I decided it was worthy enough to share.

The Mayonnaise Jar

When things in your life seem almost too much to handle,
When 24 hours in a day is not enough;
remember the mayonnaise jar and 2 cups of coffee.

A professor stood before his philosophy class
and had some items in front of him.

When the class began, wordlessly,
he picked up a very large and empty mayonnaise jar
and start to fill it with golf balls.

He then asked the students if the jar was full.
They agreed that it was.

The professor then picked up a box of pebbles and poured
it into the jar. He shook the jar lightly.
The pebbles rolled into the open areas between the golf balls.
He then asked the students again
if the jar was full. They agreed it was.

The professor next picked up a box of sand
and poured it into the jar. Of course, the sand filled up everything else
He asked once more if the jar was full. The students responded
With an unanimous 'yes.'

The professor then produced two cups of coffee from under the table
and poured the entire contents into the jar, effectively
filling the empty space between the sand.
The students laughed.

'Now,' said the professor, as the laughter subsided,
'I want you to recognize that this jar represents your life.

The golf balls are the important things - God, family,
children, health, friends, and favorite passions
Things that if everything else was lost
and only they remained, your life would still be full.

The pebbles are the things that matter like your job, house, and car.

The sand is everything else --
The small stuff.

'If you put the sand into the jar first,' he continued,
'there is no room for the pebbles or the golf balls.
The same goes for life.

If you spend all your time and energy on the small stuff,
You will never have room for the things that are
important to you.

So...

Pay attention to the things that are critical to your happiness.
Play with your children.
Take time to get medical checkups.
Take your partner out to dinner.

There will always be time
to clean the house and fix the dripping tap.

'Take care of the golf balls first --
The things that really matter.
Set your priorities. The rest is just sand.'

One of the students raised her hand
and inquired what the coffee represented.

The professor smiled.

'I'm glad you asked'.

It just goes to show you that no matter how full your life may seem,
there's always room for a couple of cups of coffee with a friend.'

Better Than This

As I think back 16 days ago, I realize that a lot has happened during my stay here at the University of Miami hospital. In a nutshell it has been constant work, work, work. My goal of trying to get my lung function back up has been a continuous fight while arm wrestling with the infection that has caused trouble in my lungs. My stay has consisted of hours of breathing treatments each day, chest physiotherapy(40 minutes of vest and an hour of manual chest PT each day), lab work, x-rays, Pulmonary Function Tests, and I.V. therapy. At this point I'm running on empty. But I know if I give up, I won't get anywhere.

As I rewind back to the first week I felt a little nervous because I was living in a new place here in Miami and had to find a new doctor. Fortunately, I found Dr. Light. His name had a nice ring to it and he had a British accent. I think he won me over with that haha. He informed me that he had been treating CF for 40 years and I could tell he was very smart. All I could think of was thank goodness he has been doing this for 40 years and I have been doing this for 25...we are going to be a great team! My first impression of him was great because of his positive demeanor. I explained to him that I'm no slacker when it comes to my health. I work really hard and when CF knocks me down, I need him to bring the big guns to help me get back up. I also loved during our first conversations he wanted me to set a goal. I've always wanted to run a marathon...well maybe start small and do a half marathon. :) And Dr. Light was positive that I could do it when my lung function got back up but it would take a lot of work and time. Everyone has challenges, it's how we deal with them that makes us either rise or fall.

They could not get a PICC line in my right arm which led to lots of holes and bruises:


Luckily success on my left arm...my Double Lumen Power PICC Solo, only requires saline flushes for long term I.V. use:


The first guns that Dr. Light pulled from his sleeve was Tobramycin(once a day) via I.V. and Zosyn every 6 hours via I.V. During that first week I felt like I was getting worse. And truly while on I.V. antibiotics my body always goes through the worst before it gets better. After the first week, I did PFT's and my lung function was down another two points at 44% FEV1. I told him that I wasn't discouraged and gave a BIG pft to my PFT's. My mind at this point was stronger then my body and I was holding on strongly to that. The stairs being my biggest barricade, I knew that if my lungs were going to become stronger I had to start with that. Putting one foot in front of the other I kept on telling myself it's only up from here and I can make it happen.

The second guns that Dr. Light pulled from his sleeve was Gentamycin(once a day) via I.V. and Imepenim(every 6 hours) via I.V. because he wanted something a little stronger after seeing my PFT results. That week was rough because I had noticed changes in my body feeling weaker then ever. Throwing up a lot from the I.V. meds going through my veins, weakness, and loss of appetite. I also noticed that when my boyfriend came to visit and we would go walking I felt like I couldn't breathe and I had to stop a few times to catch my breath. I felt like I was running in place and my heart was going to jump out of my chest but I wasn't running at all. We had just thought the medicine was much stronger this time around and that my body was getting hit hard. Little did we know that the reaction would intensify leading to two EKG's, a chest x-ray, not being able to breath on room air, being put on oxygen to breath, and having tachycardia. Unfortunately, during this time my doctor was out of town, and I had 3 brainless doctors working the floor during that week and they didn't know what was causing this reaction. Dur dur dur...if you google the medicine it shows that the antibiotics can cause adverse reactions such as not being able to breathe and tachycardia. I was in shock that the doctors did not have a clue and did not give a proper diagnosis. And it took my brilliant mom, me, and Hunter to figure it out. We knew immediately that it was the medicine and we had to tell the doctors to stop the I.V. medication going through my veins right away. When my doctor was informed he knew immediately as well that it was probably the imepenim that caused this type of reaction to occur and that my mom, me, and hunter did the right thing by telling the doctors to stop the I.V. meds.

Doctors FAIL diagnosis and FAILED words of wisdom that week:
1. "your lungs are filling up with water"...umm no that is mucus you see on my chest x-ray.
2. "you need to stop drinking so much water and be put on a diuretic"...ehhh no if I stop drinking water I will become dehydrated and hell no you are not putting me on a diuretic
3. chest x-ray is performed..."you need to have another chest x-ray two hours later"...umm no what will that prove and what is the logic behind that?
4. "you need to relax and take deep breaths and you will start to feel better"...umm really I'm very calm right now thank you very much even with the situation, it's not anxiety...seriously something is wrong here.
5. "You are walking too much you need to stop"..umm no exercise is good for the lungs and will help me to get better faster.
6. "This is normal it's your CF"...okay who are you and you can go sit in the corner...you will not pass GO or collect 200 dollars.

Overall, thank goodness I didn't listen to them because the situation could have gotten worse if I would have said yes to there stupid comments. I knew that this was not normal, it wasn't my CF causing the tachycardia and not being able to breath...it was an adverse affect from the I.V. medicine and my body just didn't like the drug and reacted in defense mode.

This week, week 3, my doctor is back in town what a relief. Lung function test down two more points to 42% FEV1. After looking at my chart and doctors notes he apologized for the stupid doctors that were on the floor. New guns and hopefully the final guns will be Ceftazadime(every 12 hours) via I.V. and Tobramycin(once a day) via I.V. I know that my body has been on a roller coaster ride and I've had a few minor set backs. Dr. Light knows that we still have a lot of work to do and I'm ready to put in the time if he is behind me. My mind continues to be strong focusing on the fact that things are going to get better and my body and lungs will eventually catch up. Because I have to believe that there is more than this...that I can be better than this.

Lung Workout

I had PFT's(pulmonary function testing) this morning. After a night of breathing treatments and breathing machines, I decided to do some breathing exercises by singing last night. Working hard on my lungs! They don't let me rest, I won't let them rest!

It was my way of preparing for today. Today's results: Numbers are down to 46% FEV1. Big bummer to hear that news today...grrr! Especially when I have been working so hard to get my lung function up.

"You can spend your whole life building
Something from nothin'
One storm can come and blow it all away
Build it anyway"

Let's just say I will continue to build...

Blue Cap and Gown

Throughout my life I have had to go through surgeries from complications of Cystic Fibrosis. Some of these surgeries have been a meconium ileus, endoscopic sinus surgery to remove polyps and congestion, numerous peripheral inserted catheters to fight off infections in the lungs, and a bronchospcopy. Cystic Fibrosis is a multiorgan disease causing problems not just in the lungs and the digestive system but can cause trouble in other organs too. Not only do CFer's have to deal with CF complications but "normal" complications occur as well such as wisdom teeth being pulled and other "common surgeries."

Well, as a woman, I was having some abnormal menstrual cycles and lots of spotting in between periods. I didn't know if these problems were stemming from CF or just a normal girl issue that I had to try to get back to "normal." My OBGYN after years of switching my birth control had decided that she should perform a hysteroscopy where a camera could go up and look around to see if everything looked good. Goody just the thing that I wanted to sign up for, right?!

During the hysteroscopy, my doctor had found a small part of thick tissue that she believed really had no need for being there and wanted to clip it out in her office. She thought that it could be causing my spotting in between periods. I thought Aha!...an answer to my problems, lets do it! I was all for it because she had already busted into freaking Alcatraz with a camera, went up into my cervix, the only thing left was to loot the goodies and leave haha. I was having severe cramping during the hysteroscopy and wanted the experience to be over as soon as possible! She realized that the clippers to cut the tissue out was not sanitized and to my dismay wanted me to make another appointment and do the hysteroscopy again. Who would ever want to sign up for that again? I decided that maybe it would be better to put me under so I wouldn't be in so much pain. And it could be a 1,2,3 procedure.

Boy was I wrong! This Thursday I went in at 7:45 am to prep for my 9:45 am hysteroscopy surgery. I've never had any problems getting put under general anesthesia through the vein and spoke with the anesthesiologist about my past surgeries and what I was allergic to. I'm a bit complicated because my skin is sensitive to tegaderm dressing, chloroprep, and betadine only under IV dressing. The anesthesiologist from the beginning had major concerns because I have Cystic Fibrosis. He talked to me about my options asking if I wanted to do an epideral anesthesia which only made me more nervous about the surgery. I didn't want to do any of his options except for what I was used to which was general anesthesia through the vein. All I could think of was oh my gosh he knows nothing about Cystic Fibrosis and I'm going to not have a good experience. I was extremely nervous wondering if I had made the right decision because I didn't have any of my pulmonary doctors that were there to point my OBGYN doctor and the anesthesiologist in the right direction and give them details of my specific CF case.

I was trying to give as much detail as possible about myself letting them know that when I sleep my O2 stats drop due to lung damage caused by Cystic Fibrosis. Well even "normal" people have a drop in O2 stats while sleeping but mine is a bigger drop. And that my persistent coughing is normal because my airways are always blocked by mucus caused by CF. Throughout my waiting nurses kept on asking, "what's with that cough" and telling me that I shouldn't be going into surgery sick. I felt like a broken record constantly saying I have Cystic Fibrosis and I cough, it's normal that I sound like this. Some understood immediately after I had said I have CF. But still, I would never say that to someone! Everyone should live by not judging a book by it's cover. You never know what someone is going through on the inside.

Finally, it was surgery time! The anesthesiologist asked if I was ready for my mixed cocktail and I told him only if there was sugar on the rim. And all I heard as the syringe of medicine was put into my vein was, one for nausea, one for pain and one for....I think the last one was the goodnight medicine. I was out in two seconds. I woke up 2 hours later with a girl holding an oxygen mask to my face pumping oxygen into my chest. And I was having a coughing fit. I asked if I could please have a cannula for my oxygen instead of the mask because it was causing my asthma to flare up. The anesthesiologist looked worried and came over to my bedside to ask if I was okay. I told him yes as the nurse by my bed kept telling me to take deep breaths. They needed to make sure my oxygen level had gone back to where it was before surgery. My throat was really sore and it was hard for me to swallow. I had found out that during surgery, I started having a spasm while I was under anesthesia and kept on coughing. He told me that I was in a tilted position during the surgery with my bottom half up and my head towards the floor. What idiots! Why would they position me like that! If you put me in a postural drainage position, of course I'm going to cough. All my mucus was probably wanting to come up and out because of my position and I couldn't cough it out because I was under anesthesia. If I wasn't so drugged up I think I would have verbally killed him.

Also, I found out that they had to intubate me and suction up mucus because I couldn't stop coughing during the procedure. Talk about scary! It makes me never want to get put under anesthesia ever again. The next morning after surgery, my whole body hurt. The only body part that did not hurt was my uterus, where my surgery was performed. My shoulders, neck, upper abs, throat, cheeks, mouth, head, and back were killing me. I asked the hospital if the aches were normal and they said that usually people will be sore when they are intubated because the surgeons have to push the patients head back to get the tube device in. As for my abs, I was thinking they probably freaked out when I started to cough and kept on lifting my body up and down to try to get me more oxygen. I was probably like a small ragdoll being tossed around. As for now, I'm resting my body and hoping no blue cap and gown for awhile.

Beautiful Lengths

About a year ago, I got the urge to grow out my hair and donate it. I made a goal to grow it out 10 inches long. I knew that I would probably turn into a woman who looked as though she had come from the jungle but at the same time I wanted to make a difference and hopefully make someone feel good at the same time by just doing a simple gesture of letting my hair grow longer.

I looked into different organizations and I picked Pantene Beautiful Lengths which encourages women and men to grow, cut, and donate their hair to make real hair wigs for women who have lost their hair due to cancer treatments. A recent study revealed that nearly 60 percent of women consider hair loss the most dreaded side effect they face when undergoing chemotherapy. And real-hair wigs can cost as much as $1200 and are often only partially covered by health insurance. It takes 6 ponytails to make one wig. I'd like to think that my ponytail was the 6th piece of the puzzle that helped to make someone happy and feel a little better both inside and out.

My New Look! :)

Cystic Fibrosis PSA shoot

Central Florida's TV27 News talked about the upcoming Great Strides Walks for Cystic Fibrosis. Taking steps to help make C.F. stand for Cure Found! For those that read this, if you're interested in finding a walk in your local area please go to: http://www.cff.org/great_strides

Team Jen 2010

On April 11th, 2010 my team and I went to the Great Strides Walk for Cystic Fibrosis in Orlando, Florida. Great Strides is a nationwide fund raising event held all over the United States in different locations. It was my third year coming out with my team at the UCF walk in Orlando and I was taken back by all the support from my friends, family, and even strangers that were there to help expand the quality of life for those with CF and find a cure. My team and I were able to raise $5,163 dollars in the fight to make CF stand for Cure Found and I could not have done it without the help of others. Words alone can not express how thankful and grateful I am to Team Jen, my friends, family, and even strangers for your support and donations.

New Lungs. New Peace!

I was so overjoyed when I heard the news that my friend Jessica had got a phone call for new lungs yesterday! She had been waiting for so long, I had been praying that her wish for new lungs would come true soon. She went in for surgery yesterday and her family has kept everyone posted on her blog. I was happy to hear that after 8 hours of surgery she was out and in ICU. That the goal for today was to take her off the vent and possibly get her breathing on her own. I'm still waiting to hear the amazing news that she is breathing on her own with healthy new lungs!

It's amazing that I have never met her face to face though have a huge Cyster bond with her made by facebook chatting, messages, phone calls, and texts. We met on facebook with the common bond of having Cystic Fibrosis and both being from Tampa and instantly became friends. She has become a really good friend of mine and it's all thanks to facebook hehe. We realized that we had most of the same doctors throughout our life and had gone through similar experiences. It's so interesting to be in the same area and have the same doctors though never cross paths. She is amazing and so strong. She is also a face of hope, that you can go through so much and come out so strong. Thank you Jess for being such an amazing inspiration and a great friend! I'm glad you "Kept Swimming." Here is to new beginnings and a quick recovery! New Lungs. New Peace. xox

My beautiful Cyster Jess before her lung transplant:


Aiden and I along with the rest of her breathe team are soooooo happy for her! Fight on girlie!

Happy Day!

So it's really exciting! I had my PICC line removed! For those that don't know, a PICC line is a catheter inserted in the upper part of the arm and threaded inside the main vein up to the heart for long term IV antibiotic use. I was on intravenous antibiotics for a good 3 and a half weeks. Now no more intravenous antibiotics, dressing changes, or blood work! And I'm no longer missing in action, I'm back in action! Yay! :)

The PICC line in this picture is a double lumen Groshong PICC. The red lumen is for blood withdrawal and the white lumen is used for antibiotics. I can almost play connect the dots with all my PICC line scars on my arms.

I usually pick out either a black or white soft sock, cut it on both ends, and slide it up my arm to cover the line when it is not being used. A different color depending on my mood, have to spice things up a little and be fashionable hehe. There is also a clear dressing over the line keeping it secure and air tight. The sock is just a cute way of dressing my arm up so that I don't have odd wires popping out of my body. And the great thing is you can throw those socks in the wash and dryer and they remain all warm and clean.



And now the PICC line is removed. I'm free! :) The hole is wrapped with gauze and bandage providing pressure for 24 hours. A little red dot(scar) is all that is left.



My amazing home nurse who I have known, for a good 5 years, ended up getting the go ahead from my doctors to pull the line out because I was done with my antibiotics. If you have a weak stomach, I suggest you don't watch. It's kind of like a magic trick. But I thought for those CFer's out there that came across my blog, it would be helpful. Education is power and I feel like if you go into any situation being really knowledgeable you can get through anything.




And I thought this video was cute. Hunter and Aiden were having play time while I was getting all bandaged up hehe. Aiden is both a soccer player and a baseball player. He has mad skills!

Recap

Catching up. It has been a rough 3 months for me. I was on IV antibiotics from the end of December to January and back in the hospital come February. It's like that Coldplay song:
When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse

Some say CF is like breathing through a straw but to describe my typical day living with Cystic Fibrosis is like a Mucinex commercial and then when I get an infection in my lungs it's like the ancestors come, mothers, grandparents, brothers, you name it everyone is there causing turmoil and destruction. My lung function ended up dropping to 42% FEV1 and I was having a harder time breathing and doing normal everyday activities such as going up the stairs and making the bed. The main reason for a persons lung function to drop is by lung damage and/or infection. It was really scary and I had never been in the 40's before. I was throwing up a lot from all the mucus in my body and sleeping with a box of tissues. I knew that my body was having a hard time fighting off an infection and something needed to be done fast. Lung damage is irreversible and can never be gained back but I was hoping that I it was an exacerbation of my lungs and that I could gain at least some of my lung function back by getting rid of the infection and inflammation. After 8 days of IV's I had gained some lung function back and it went to 51% FEV1 which was such a good feeling. A normal lung function is in the 90% to 100% range of FEV1. I have not been in that range since high school and have not been able to regain that lung function due to lung damage from the disease.

February 10th I went in the to the hospital and had a Peripherally Inserted Central Catheter(PICC line) put in for continuous IV use. It took 2 hours for them to put the line in because of scar tissue and damage to the vein from past PICC lines. I have lost count of how many PICC lines I have had put in my arm throughout my life after I reached PICC line #10. For the past 3 years my doctors have been talking to be about getting a Port because with Cystic Fibrosis comes frequent lung infections and a Port just is a more convenient route for long term IV use. But at the same time it will be a life changing route for me where the port would be permanent and I'm not ready to take that step yet. I will stick with PICC lines for now until my veins won't work for PICC lines anymore. Maybe that is just the stubborn side of me not wanting my veins to give up on me now.

I'm usually very quiet and mainly focus on my health when I get sick and become MIA for awhile. With an updated facebook status, so my friends wouldn't think I fell off the face of the earth, I went into the hospital knowing that it would take some time for my lungs to get it together. Usually I'm not the best patient in the hospital because I'm used to taking care of myself. For 25 years I have been living with Cystic Fibrosis so for me, I know my body better then anyone else when it comes to the disease process. And not every nurse knows about Cystic Fibrosis and the regimen that it entails which causes some complications and disagreements during a hospital stay. But I was very proud of myself for not yelling at any nurses and keeping calm.

Only one incident drove me nuts: I had a new nurse that was not familiar with Cystic Fibrosis or the proper way to flush a double lumen Groshong PICC line. Being that she was my nurse it kind of worried me because how would she be qualified to take care of me if she wasn't educated on my situation. She wasn't doing the proper protocol when it came to my PICC line and I tried to explain to her nicely the proper way to flush a PICC line which is saline, antibiotic, saline and that having me on a drip of sodium chloride or waiting to flush the line for an hour wouldn't give the line a proper flush. She also continued to check to see if there was blood return that was able to come up the line before and after the antibiotic. Basically she was an idiot and I tried to explain nicely that she did not need to do that before and after and it would clot the line but she told me I didn't know what I was talking about. I wanted to punch her in the face but continued to stay calm. Long story short she was wrong, she clotted the line with blood, and thank goodness the PICC line team was able to use a pumping system filled with medicine to unclog it or I would have had the line pulled and forced to get another PICC line. After having a long talk with the charge nurse she no longer was my nurse and hopefully took my words into consideration. I felt bad for her because she was really sweet but at the same time I had to be forceful because when it comes to my body and my health, I have to step up and make sure things are done the right way.

13 days I was in the hospital on hardcore IV's. I had three different bugs in my lungs: pseadamonas, MRSA, stenotrophomonas maltophilia(a new bug never been in my lungs before) that was causing a big mess. My doctors kept switching around my antibiotics waiting for my sputum culture to come back. The final antibiotic decision was:

Zyvox 600 mg(every 12 hours)
Aztreanam - I had never been on this drug via I.V so I was very excited and hoping that it would kill the infection fast (every 8 hours)
Bactrim (3 times a day)- I was on this IV for two days but I had to stop because I was violently throwing up and grey from all the medication. It was too much for my body to take. So the drug was switched to being taken orally which I have had a better reaction to.
Colistin via nebulizer BID(two times a day)

After 13 days of hard work to get the mucus up, chest physiotherapy, breathing treatments, IV antibiotics, PFT's, bloodwork, chest xrays, CAT scan of my lungs, blood glucose tolerance test, pricking of fingers(while I was in the hospital I was diagnosed as pre diabetic-diabetes is common in those with CF because our pancreas is scarred from mucus and damaged by the disease causing our pancreas to not digest food or produce insulin correctly), and lack of sleep I was ready to go home. Even in the not so easy times, I have the best boyfriend, friends, and family in the world that can hold me up and catch me when I fall. I am so grateful for that. My boyfriend, friends, and family made my room so bright and colorful filled with cards, flowers, balloons and laughter when they came to visit me which made my hospital stay a lot better.








When I finally got the okay that I could go home on February 23rd, I was so excited! It was such an amazing feeling after being in a tiny room to walk outside and smell the air. I know it sounds a little weird but it's the best feeling in the world after a long hospital stay. That and a nice long shower in your own bathroom! :) Hunter came to pick me up with my baby Aiden(dog) and we rode with the windows down all the way home. One word: BLISS.

I'm now home on home IV's. I'm feeling a lot better but I need to finish the IV cycle and make sure that I am completely without infection before I have the line pulled. I don't want a relapse. Because there is a shortage of Aztreanam IV outside of the hospital I'm doing Cefepime IV and Zyvox IV at home. I'm still a little MIA(missing in action) because I'm having to do my own IV's and my daily CF health regimen on top of that. Also, the medicines make me tired and are really rough on my body so when I do have a chance for downtime, I take a nap. Sometimes I feel like the tortoise in a race for my life but I'm confident that I will win...slow and steady.

Taking Strides

I can't sleep because I've been coughing all night. My lungs are having a spasm. I've decided to write in my blog and do some breathing machines to try to ease the situation. To all my Cysters and Fibros (CF friends) "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength."

Cystic Fibrosis is a rare disease. Only affecting 30,000 people in the United States. I'm the only person in my family that has Cystic Fibrosis. I was diagnosed at birth due to an obstruction in my lower intestines which is common in CF babies. It's a fatal genetic disease caused by two recessive genes. I guess you can say I was the lucky crayon in the box.

It's sad to know that a lot of drug companies won't research or put money towards CF because it affects a small population. Us CFer's rely on the Cystic Fibrosis Foundation and fund raising by friends and family to help fund medications, research, and to help find a cure. CF for me is a full time job. People have asked me if the disease can go away, but it can't go into remission. I never get a break, it never goes away. The only way to finally be free of the disease is to find a cure. I haven't lost hope.

The scientists are so close to a cure. They know where the CF gene is located in the body they just have to find a way to fix and correct it. Lack of funds creates a problem. That is why for the past three years my team and I have walked at the Great Strides Walk for Cystic Fibrosis. Funds help science and science help to save lives. Great Strides is the Cystic Fibrosis Foundation National fund raising event. My goal this year is to raise $3,000 dollars in the mission to make CF stand for Cure Found. I'm crossing my fingers that I reach my goal this year.

Play On

Everything happened so fast and it's been a while since I posted. First off, I want to say yay I'm free and no longer on I.V. antibiotics! I had the PICC-line officially pulled out this past Friday...woohoo!

Let's rewind...I had an appointment with my pulmonologist to see if I should continue with I.V.'s or pull the PICC-line out, back on the 5th of January. I had been on antibiotics intravenously for 2 weeks. After 2 weeks, I had energy and less congestion. The appointment went great and my doctor said that my infection was gone and it was time to take the PICC-line out. But, I usually do three weeks of I.V.'s and I was nervous that two weeks wouldn't be enough and I might have a relapse which I didn't want. My boyfriend asked my doctor if another week of I.V. antibiotics would benefit me and my doctor said yes, it would. I guess I wanted to see if I could get even more of a result by doing another week, and he agreed that would be best. My x-ray still isn't so pretty(CF lungs)...but the white areas in the x-ray are a little lighter, which is a good sign. On my x-ray pictures, there are constantly white areas in my lungs due to mucus in my airways and lung damage caused by infections. He didn't do PFT's because his office was really backed up. We just did an x-ray and he gave me a conclusion from there...a total of 3 weeks of I.V. antibiotics.

Another big event that had occurred was a good 5 months ago I had booked a cruise to go to the Keys and Cozumel for my friend's Bachelorette party. Two days before the cruise, I had my doctors appointment. I was certain that he was going to say no way, but I hoped that the infection would be gone and he would approve my going on the trip. He basically asked if I was planning on going on the cruise, and I replied no. After sitting down and talking with him about it, he actually wanted me to go. Being that we agreed to do another week of I.V. antibiotics, he suggested that I pack my I.V. balls and go on the cruise. So with a script in hand, I packed and went on the cruise. I wasn't sure if it was something that I wanted to do with all my usual meds, I.V. meds, and baggage...but after telling myself over and over, "you can do this, you can do this", I ended up going on a four-day cruise. My friends were understanding and oftentimes I had to excuse myself to focus on me. When I needed to take time for my health, I did so. To my friends, I'm sure it was weird that I could be on I.V.'s and still be walking, dancing, and doing fun activities. But my best explanation is: when "normal people" take oral antibiotics, like Cipro, even after 7 days when they are feeling better and back to their usual selves, they still have to finish the full pill-cycle of 14 days of antibiotics. My last days on I.V.'s are always the best because I'm rid of my infection. Unfortunately, oral antibiotics don't work for me because I have been on them my whole life and my body is used to them...I.V. antibiotics are the next step to fighting off bacteria and infections. I always find myself making analogies...even I am sometimes bewildered by the fact that one day I can be fine, and the next day I have a full blown infection. But it's just how the disease is and sometimes I have to deal with the cards I'm dealt and play on.

I had so much fun on the cruise with the bride-to-be and my friends! I laughed as hard during those four days as I ever have in my life. And those are memories that I will cherish forever. I'm so glad that I went. There are times in my life that, due to my illness, I have to press the pause button...but when I get the green light to go, you betcha' I keep moving forward. :)

Cheers to 2010

Last night was a pretty low key New Year's Eve. Being that I have the PICC line still in, I didn't want to get too crazy in the revelry. My health is my first priority at this moment. I'm hoping for some smooth sailing and less waves in 2010. Once I get the PICC line pulled and I'm free, I will definitely pop a bottle of bubbly! My mom was my celebration buddy for the night. We decided to step outside to get a glimpse of the night sky and I got to see the Blue Moon. The last one seen was in 1990 so it was a remarkable sight!

My first day of 2010 already started out perfect! Fun events that occurred today:
1. I opened a present that came in the mail from my fellow cyster, Stina. I've been listening to my present, the new Michael Buble CD, all day. Ahhh I love it! (If you read this, thank you!)
2. I also ate some Chinese food and my first fortune cookie for 2010 read, "The time has come to allow your heart to guide you." (ooo ahhhhh...I love fortune cookies...so insightful!)
I think these are good signs to guarantee a good year. :)

As I was relaxing today with Buble in the background I started to think about my New Year Resolution: This year I plan on getting back into the gym and working my lungs out! Exercise is the best form of airway clearance for someone with C.F. I need to start taking more control over my health and not letting the disease control me. My goal is to run a marathon this year and I'm determined to do it. I've heard the first step is to write it down and my next step will be putting my words into action. Catherine Pulsifer says it best--"We need to determine what activities best utilize our time in order to achieve the results we desire in all areas of our life!" I can't wait to see what 2010 has in store for me!