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.