I am on day 17 of IV Cipro and IV Aztreonam. I am feeling “better” but I use that term loosely. I also don’t want to jinx myself by saying I am feeling “better.” haha However, I am better than I was. Day 1 through about 4 was brutal with the fevers and recovering from my whirlwind trip to KC…12 hours driving there, 37 hours there, 12 hours driving back. I felt horrible the first few days back home but I am happy to report I am better than I was. I still get worn out pretty easy and try my best to take it easy. The first week of IVs I did a lot of sleeping which helps. I am now to a point where I feel like I can make it through the day without a nap, depending on what I have going on. It is hard to be off your A game when there is so much that needs to get done. For me and the OCD side of me it is hard to sit back and do nothing when there are things I could be doing. I know, I know…”rest Shannon!” I do my best. There are days that I have no choice but to do nothing because my body makes me. The other days I test the limits as usual. haha Continue reading
Category Archives: IVs
What does being sick look like
Once again I have fallen off the radar in some aspects as I do when I get sick. It is hard for me not to fall off the radar when I’ sick. I try not to because I know that it worries some. With that said, I figured I would try to paint a picture of what being sick looks like for me.
First of all, being sick drains me of all energy. The infection that takes up camp in my lungs is a constant battle. It is never eradicated, it is just a matter of how active it is and if it is causing me problems. If we treated me with antibiotics every time I cultured something I would never be off of IVs. We only treat when I am showing symptoms of an active infection such as increased cough, increased sputum production, change in sputum color (darker/brighter=more infection), sleeping more, get worn out easier, short of breath, wheezing, chest tightness, etc. Continue reading
1400 miles, car accident & IVs
It was an interesting week to say the least. Now I will tell you why. I made a trip to KS because my mom was supposed to have a procedure done for her SVT (racing heart). I drove 12 hours to KS from TN on Tuesday. I wasn’t feeling the greatest but I wanted to be there so I went. I made it there around 6:30pm. My mom’s nurse called to give her her sputum culture results which was 2 strands of pneumonia at about 7pm. Her nurse had to notify the cath lab to see if they wanted to proceed. They started her on oral antibiotics. The doc called in the morning and postponed the surgery for a week or 2, until she is “clear.” With that said, it was a good thing they didn’t proceed because she needs time to get better first. At this point I still don’t feel good. Continue reading
Needle Free after 29 long days
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
Medicine balls!
Medicine balls=Happiness, Joy, Freedom!!!!! I opened my IV supplies that got delivered today and much to my surprise my Zosyn was in a medicine ball and not a bag for gravity flow. What are medicine balls you ask? Well they are one of the best medical inventions ever! It is basically a balloon inside of a ball like thing that has the medicine inside. You hook it up, unclamp the tubing and let it go. The balloon that has the medicine inside slowly deflates pushing the medicine in. It takes 30 minutes to infuse then you flush it off with saline and heparin. You are good to go until your next dose, which is every 6 hours in my case with Zosyn.
I just wanted to share my excitement of finding out that I would not be stuck to the IV pole 4 times a day.
Until next time…
14 days of IVs down…
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
Accessing my port
I have had people ask me how I access my port for IVs and what it entails. I decided to record myself accessing my port last night. Sorry it is a bit long because I couldn’t get my gloves on. They are sterile so I can’t just throw them on. I have to be careful not to touch the outside of the gloves.
I do use EMLA numbing cream before accessing my port. I put a glob of the EMLA on top of my port site and cover it with a small tegaderm for at least 30 minutes but closer to 45 minutes. I cleaned the EMLA cream off right before recording. I will answer some of the questions that might be going through your mind…. Continue reading
CF Happens 