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I've been meaning to write a blog about this because it's a question I get often and I just so happened to answer it this weekend, so I thought I would share.
I have a question? Why do you always do such long hospital stays? If it helps you great, I was just always told that after ten days if antibiotics don't work, they aren't going to, they always kept me 14 days so that the drugs would be in my system a bit longer, but after 2 weeks if I wasnt better they would start me on new Meds or add to the brew. So I was just wondering?I guess the short answer to your question is that I come into the hospital for more reasons than just IV antibiotics - focused care, hand pounds, rest, etc. If I thought IV antibiotics (and IV antibiotics alone) did the trick, I would just do them at home. For me, I've improved in here after 5 days at times and after 25 days at other times.
Like most things, I just think it's important to figure out what works for us, truly works best for us, and go with that. It takes a lot of trial and error, but eventually we can get it figured out.
And about the 10 day antibiotic thing... that is still disputed in the medical community and I've been told off the record that some doctors use it as a tool to just get us out of the hospital. Many people don't think about this, but hospitals start to lose money on CF patients after a certain amount of days. Could pressure from the hospital or from the insurance company play a role? I of course don't know, but when it comes to money, nothing is out of the question.
Also, how antibiotics actually work in the lungs of a CF patient is not only not clear but hardly an exact science. A study just came out stating that there was no difference in clinical outcomes when it came to selecting drugs based on a sensitivity study and just cycling the most common antibiotics. It is my belief (as well as the belief of many others) that antibiotics are still one of the most misunderstood parts of our care.
The only way to truly know if the antibiotics were taking are working, is to focus on the quality of life and the improvement we see in how we feel. It's also important to remember that there is also a victory in not getting worse. My numbers often don't change for the better while I'm in the Hole, as my exercise is greatly reduced and I don't do well lung wise laying around all day. My number 1 goal for coming to the hospital is to get me back to a place that I can leave here and confidently say, "I'm ready to kick some major booty!"
Hope that answers your question, it was a good one!
And about the 10 day antibiotic thing... that is still disputed in the medical community and I've been told off the record that some doctors use it as a tool to just get us out of the hospital. Many people don't think about this, but hospitals start to lose money on CF patients after a certain amount of days. Could pressure from the hospital or from the insurance company play a role? I of course don't know, but when it comes to money, nothing is out of the question.
Also, how antibiotics actually work in the lungs of a CF patient is not only not clear but hardly an exact science. A study just came out stating that there was no difference in clinical outcomes when it came to selecting drugs based on a sensitivity study and just cycling the most common antibiotics. It is my belief (as well as the belief of many others) that antibiotics are still one of the most misunderstood parts of our care.
The only way to truly know if the antibiotics were taking are working, is to focus on the quality of life and the improvement we see in how we feel. It's also important to remember that there is also a victory in not getting worse. My numbers often don't change for the better while I'm in the Hole, as my exercise is greatly reduced and I don't do well lung wise laying around all day. My number 1 goal for coming to the hospital is to get me back to a place that I can leave here and confidently say, "I'm ready to kick some major booty!"
Hope that answers your question, it was a good one!
**It's also important to note that I have in fact tried at home IV's more than a couple times and I neither felt better, nor saw an increase in lung function, any of those times. That doesn't mean that I won't try again, but it does mean that I am skeptical. Things can change however, and I'll never pigeon hole something forever :)
