What if I didn’t have CF? That is one open-ended question. This topic for this post has been on my mind for a while now. I just didn’t know how to go about writing it and then there was the whole coughing up blood thing that got in the way.
The “what if I didn’t have CF” question/statement goes way back to childhood. I think I am just going to start to list things and elaborate when needed. Continue reading →
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 →
I finished IV antibiotics last night. It’s been a long 5.5 weeks of multiple antibiotics. Doing IVs is second nature now after all these years. I’m very organized so I always have things set up to make IVs easier to weave into my regular schedule.
People ask or want to know when I will be better. That is a great question. I have not felt great for a good while now, 2-3 months maybe. I was in the hospital for 9 days and you would think I would come out better. Being released from the hospital doesn’t mean I’m fixed by any means it means hopefully we have things situated and are heading in the right direction to being better. Continue reading →
I am finally sitting down at a cleared off desk in order to find the keyboard to post. haha It’s amazing how much stuff piles up when you are gone for 9 days and the family is still here. It’s not like you were on vacation! Continue reading →
I came across an article on Facebook and found it interesting and well written. I was going to share the article on FB but decided that my post would quickly become as long as a blog post, therefore I’m posting here. Continue reading →
I guess I am really in my feelings today so bear with me. I came across a news article about Rory of “Joey + Rory” the country duo and her battle with cancer. In that article I found another link and then finally the link to This Life I Live blog. Tears rolled down my cheeks as I read what he wrote, “So we don’t have forever. We’ve got right now. And that’s enough.” I don’t have a clue why this is hitting me so hard today but it is doing a number on my tear ducts. Continue reading →
I have what I like to call my “bucket list.” It’s a list of things that I want to accomplish before my lungs get worse and don’t allow me to do them anymore. I don’t have a written out list so much but it’s in my head. I guess I should get it out of there. One of the top things I have wanted to do since moving to East Tennessee is hiking. Let’s just say that I don’t mean the repelling off the side of a mountain kind of hiking. That would just be stupid. Haha Continue reading →
It has taken me almost 4 hours to get online. UTs wifi sucks! I hope this loads…
I received a call from my nurse saying that my creatinine (kidney level) was high on my labs yesterday. The normal range for a female is .5-1.1. Mine was 5.34!!! I was told to head to the ER for fluids and to be admitted. Oh joy. Honestly I feel bad enough that I actually don’t mind being admitted. I’m just ready to feel better. Saturday night around 8pm or 9pm I got very nauseous. I was in bed sleeping all day on Sunday. I had an appointment for my regular labs while on IVs yesterday afternoon. I managed enough energy to get to the hospital and back home. I have been fuzzy headed and kind of blurry vision along with tired and worn out, Continue reading →
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 →