57 doses of Aztreonam, 19 doses of Amikacin, 133 Saline syringes (not including the extras for blood draws and reaccessing), 57 Heparin syringes, 2 Huber needles, 3 dressing changes…that’s what I have accomplished over the last 19 days plus tomorrow morning. Tomorrow morning is my last doses of IVs and tomorrow afternoon is my last day of labs. I will be needle free as of 1:15pm tomorrow afternoon!! I’m very ready to be free from the needle and dressings that’s for sure.
Now for the million dollar question, “Do I feel better?” A lot of people think that after I do IVs I’m “better” as in not sick anymore and that is not the case. Yes, I am better for the time being and the goal is to stretch the time between IVs as long as possible. IVs are inevitable in my life so I have to do what I have to do to keep on keeping on. Continue reading
I have been super busy and have been meaning to update you all. It has been on my “to do” list for a week but it keeps getting bumped. I have a few minutes to finally ‘get er done.’
The Rising Star educational night was really great! Talking about CF and all of what it entails is my, or at least one of, my elements. I love to educate people on CF. I always encourage people to ask any questions they have about CF and what it’s like to have CF. For those of you that were at the educational night, I hope that you all learned something and I didn’t bore you. I have said it before, and I will say it again, I am pleasantly surprised by the amount of fundraising and awareness that the East Tennessee Chapter of the CFF raises. I am grateful to be a part of it. My nurse said, “now that we know that you are willing to do these kind of things, get ready!” Challenge accepted!!
Hello all! I’m squeezing in 5 min to type this up on my phone (so excuse any typos…haha). We are on our way to a big CFF fundraiser called Wine on the Water. I am very proud of east Tennessee’s CFF chapter in how many fundraisers they do. Continue reading
Freedom is being needle free!! Well I know there is much more to freedom than that but right now that is my freedom. I finished 4 weeks, actually 29 days, of IVs yesterday. It is so nice to be free from IVs. Now I know you are asking the million dollar questions, “How do you feel? Do you feel better?” Better is a relative term. I feel “better” in the big picture. The IVs take so much out of me, wear me out and drain me. Having IVs every 6 hours means that you don’t get much sleep or at least you only get to sleep in spurts. It will take me a few days to a week to get back to somewhat normal feeling in the sense of not being so drained, or that is my hope. As far as my lungs and how they feel, they feel better. I am not coughing as much but still having my coughing fits and mornings are the worst. Mornings are the worst and will always be the worst because when I lay down to sleep all of the junk in my lungs settles on the lung wall. When I toss and turn or sit up it all starts to move and irritates my lungs, triggering coughing fits. With that said, if you ever call me in the morning and I am still in bed I may not answer it because I will start coughing and it will not be a productive conversation and coughing in someones ear and not being able to talk is not one of my favorite things to do. Continue reading
I started IVs at home on August 19th. Today marks 14 days and I don’t feel any better. I don’t feel horrible but I also don’t feel great in general. I called my nurse to tell her that I was not feeling any better and that I think we need a med change. I had to be at the hospital at noon for my weekly labs so when I was finished I stopped by clinic to see what she found out. The verdict is that we are stopping the Aztreonam which was every 8 hours, staying on the Levaquin every 24 hours and adding Zosyn which is every 6 hours. I have been on Zosyn many times. The bummer about being on Zosyn is that it is every 6 hours and has to go in by gravity. That means I am stuck to the IV pole 4 times a day for 30-45 min each time, not to mention the 2 hours it takes the Levaquin to infuse. This means that I am not as mobile as I like to be when I’m on the medicine balls. I will do what I have to do to feel better, so it is what it is. Here comes even more jacked up sleep schedule. Naps will be my friend, as if they aren’t always but more so right now. Continue reading
Here is a list of common signs and symptoms of CF:
Very salty-tasting skin (my mom used to kiss my forehead and lick her lips to see if I needed to eat a salty snack to replenish salt)
Persistent coughing (coughing is what we do and we do it well)
Coughing that produces thick sticky mucus (oh the things that come out of our lungs)
Frequent lung infections (frequently diagnosed as pneumonia or bronchitis before CF diagnosis and classified as CF Exacerbation and/or pneumonia after diagnosis)
Wheezing or shortness of breath (a lot of people with CF also have asthma like I do…double whammy)
Poor growth and slow weight gain, in spite of a good appetite, failure to thrive (what lead to my diagnosis)
Frequent greasy, bulky stools or difficulty in bowel movements (oh boy, you don’t even want to know)
Small, fleshy growths in the nose, called nasal polyps (there have been people that have been diagnosed because their polyps led to questioning CF because they are so prominent in CF patients) (I have had multiple sinus surgeries which I will talk about on another day)
Liver issues, enlarged or scaring or narrowing of the ducts
CF affects multiple parts of the body but is mostly known as a lung disease and/or problems with pancreatic/stomach.
“Playing the Cards Life has Dealt”
Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
- clogs the lungs and leads to life-threatening lung infections; and
- Obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Symptoms of Cystic Fibrosis (source: http://www.cff.org/AboutCF/)
People with CF can have a variety of symptoms, including:
- very salty-tasting skin;
- persistent coughing, at times with phlegm;
- frequent lung infections;
- wheezing or shortness of breath;
- poor growth/weight gain in spite of a good appetite; and
- frequent greasy, bulky stools or difficulty in bowel movements