IV antibiotic update: Last Thursday (the 1st) I had my regular labs drawn. I received a call Friday morning to stop the Colistin and “drink enough to float a boat” because my creatinine had gone up to 1.2. That meant that my kidneys were starting to “get hurt” by the colistin since it is filtered through the kidneys. We don’t need any more kidney injuries like we had a year and a half-ish ago when my creatinine went way up to 6.9! It is better to stop it before it gets to bad. I had my labs rechecked on Monday (the 5th) and my creatinine was back into normal range. I continued the cefapime every 8 hours for the last 7 days of the 21 day regimen.
I finished IVs on Thursday (the 8th). I have been super tired, therefore I have been sleeping a lot. IVs take A LOT out of me. Just think, as the antibiotics are killing the bad stuff, they are killing good stuff as well. I have lots of headaches, nausea and fatigue when on IVs so it isn’t the most fun thing I can think of doing for 3 weeks. I would much rather be sitting on the beach for 21 days! I feel like that would bring much more healing sometimes than stupid antibiotics.
Many people have asked how I am doing throughout the time I was on IVs, as people often do which got me thinking. Do I give them the nice and quick answer of, “I’m hanging in there.” or do I tell them the truth of how bad the IVs make me feel while I’m trying to get to feeling better? I save everyone the sob story and say that I am ok and hanging in there, it’s just easier. Then there is always someone that asks how I’m doing and they ask at the time I feel like verbal vomiting all over because I am all in my feelings and emotional, so they get the long version whether they like it or not…haha.
As you know I am an open book when it comes to me having CF because I love to educate people on it and to let people know that just because I “look good” doesn’t mean I am good. I also don’t want people feeling bad for telling me that I look good when I don’t feel great. It just means my “faking it until I make it” is working….haha.
I have been in my head a lot with my thoughts. It’s hard not to when you have an incurable progressive disease that seems to be progressing faster the worse you get. I’m about to get real with ya, so hold on for the ride!
We had my husbands holiday work party last night. It was a lot of fun but of course CF had to ruin my fun. We played musical chairs at our tables and we were grown adults “running” around the table to get to the next chair. I gave in after a few rounds because I couldn’t “run” and breathe. (CF 1 Shannon 0) At the end of the night they put on some dance music and I said, “I’m going out there.” The music was your typical dance party line dances like cupids shuffle and the wobble. I last all of about 2 minutes before I was huffing and puffing and motioning to my husband to get my oxygen. Then I was pissed at my body. I hate that I can’t do simple things like dance the wobble without wanting to suck my oxygen tank dry. (CF 2 Shannon 0) After the party we went to a bar and grill to hang out with friends and play pool. There’s only one issue with this scenario….the pool tables are upstairs. I’m stubborn and took the stairs slow and not the elevator, then of course I was once again huffing and puffing. I try not to take the easy route on things like walking into the doctors office instead of riding the golf cart from my car to the door. I am not ready to give up that much of my independence. I have already had to give some up and I know it will only get worse the sicker I get so I will be stubborn as long as I can be.
Today I watched a documentary about a gal that had breast cancer that went into remission then ended up with liver cancer. I cried through most of it because she talked about how amazing her husband was to her and about the reality of life in your face went faced with something that is killing your body. She even said, “I am so lucky to have found my true love. If I had to get cancer in order to experience true love…….I would take cancer again.” My husband is amazing. He is my rock. He lets me cry and snot all over him and then picks me up, helps dry my eyes and then we get back to living. I came out of the office after watching the documentary while doing my treatment with my eyes and nose all red from crying. My husband looked up at me, noticed my red face and said, “what’s wrong?” All I could say is, “I don’t want to die,” and then I began sobbing. I curled up in his lap and began telling him what I watched. I shared my fears of ‘drowning to death’ and worries leaving everyone behind and much more. I had a good ol cry fest and coughing fit because those go hand in hand. Then I picked myself up, dusted myself off and made myself lunch. (CF 2 Shannon 1) My husband said, “I have seen many of the CF community give up and quit fighting when it gets hard but that’s not you. You keep fighting.” People say that they see me with a great positive attitude but as you can see from the above scenario that is not always the case. I always try to end up with a positive attitude and outlook but a lot of times the negative comes first. I guess I just have to get that out of the way to make sure my mind knows who’s boss. And there you have it folks, the open book side of me that is not the easiest to share but the sicker I get the harder it is to have energy to do a lot of things. I end up sleeping a lot. The average healthy person doesn’t realize how much work it is just to breath because it is something that your body just does without you thinking about it. Breathing and coughing are a lot of work when you have sick lungs and you actually have to think about your next breath.
Until next time…