Today is brought to you by the number 53. What is the significance of 53? It is the number of days since I last finished IV antibiotics (7 weeks 5 days). As I updated in my last blog I grew out some new bacteria called Achromobacter xylosoxidans. I’m going to call it just ‘Achromobacter,’ from now on because that is a lot to type. Continue reading
Let’s see….where to start. It’s been 7 days since my power port was placed. I’m healing nicely. There has been minimal swelling and bruising. The most painful part is the incision healing. I have been using ice packs for the swelling and bruising. There is a steri-strip over the incision that will come off when it’s ready. I sure do want to rip it off though, it is making it to where if I move a certain way it pulls and is painful. Continue reading
Today was a busy fun filled day at UT hospital for 2 doctor appointments. Ok, it wasn’t so fun filled but it sure was a long one. It was about 7 hours today. I had a big lapse of time between appointments which I spent in the cafeteria having some lunch and watching a movie with my sound canceling headphones so I could actually hear the movie. Oh yes and of course answering emails, Fb messages and comments,etc. Continue reading
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
Nine days of IVs down…?? more days to go. When the port is accessed you are supposed to change the needle weekly. It’s not the end of the world if it doesn’t get changed on the exact day. It is also good to give your skin a break from the tegaderm that covers your needle. The major perk is being able to take a REAL shower which means not having to sponge bathe and wash my hair over the side of the tub. I deaccessed my port this afternoon after my 2pm dose. I was due to change my needle on Friday but I wasn’t motivated to do it. Then Saturday I slept most of the day. I just finished with my real shower and I’m now doing a treatment. When I’m finished with my treatment I’ll reaccess my port in time to do my next dose. Continue reading
I got paroled today! My creatinine was 1.82 this morning!! After receiving the great news that my creatinine was down my sister walked into my hospital room. Mind you, she lives in Kansas City and I’m in Knoxville, TN…11 hours apart! I was speechless and that doesn’t happen often. I was so surprised. That made my day even better. My doc came in and asked if I was ready to go home and of course I said yes. I wasn’t going to argue with him. Although I was ok with staying if it meant a sister sleep over in the hospital. We haven’t done that in years. I got my walking papers and was home by noon. Continue reading
I just got back from the ENT. My sinuses looked “fabulous” in regards to little to no polyps and all the green mucus yuck. However I have some MAJOR allergy issues going on. He said that my sinuses look blue. I thought that was impressive. I guess the blue is from all the irritated allergy stuff up there. I am in East Tennessee which happens to be the allergy capital of the U.S. You can see the pollen on everything. 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
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…
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