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!