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.
