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.
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!
Kari · 706 weeks ago
RunSickboyRun 96p · 706 weeks ago
Kari · 706 weeks ago
RunSickboyRun 96p · 706 weeks ago
Steph Rath · 706 weeks ago
The most important part for me is the intensive respiratory therapy. At home I use the vest 2x per day. In the hospital I refuse to use the vest and have Chest PT 3x per day with nebs 4x per day. Yes it's somewhat exhausting but man do I get cleared out. In my mind there is nothing better to get out old thick mucus than a good hand pound. I talk to the RT supervisor to make sure those able & willing to do CPT are the ones that get me.
To avoid germs my mom does a wipe down of my room with those disinfecting wipes. My room is always an isolation room too. That way I am protected from other patients.
Peace,
Steph
Peace,
Steph
RunSickboyRun 96p · 706 weeks ago
Mary · 706 weeks ago
Feel better each day, Ronnie. :o)
RunSickboyRun 96p · 706 weeks ago
Thank you so much for this insightful comment :)
Jodi · 706 weeks ago
Can Mandi be taught how to do the "clapping" so that it can be done at home in conjunction with your other therapies? Back in the day my friend's parents would do her CF therapy multiple times daily? In fact, I don't ever remember her being hospitalized in all the years we were friends.
Jodi
RunSickboyRun 96p · 706 weeks ago