Monday, September 19, 2011

Why Do You Go Into The Hospital For So Long??

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!

**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 :)

Comments (14)

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I currently service on a CF Advisory committee for my health insurance carrier and I can tell you that profit vs loss is VERY important to insurance companies big and small. Most insurance companies loss millions on CF patients, thus a rushed approach to care. I agree with you that patients need to be acutely aware of what works for them and work with their healthcare team to implement a strategy. I for example, do much better with doing 2-4 days in hospital to get a "boost" then go home to continue my therapies in addition to carry-out my day-to-day routine. Take care~
3 replies · active 706 weeks ago
I've always wondered if some docs are apt to feel the pressure from insurance companies and some aren't? Then my follow up question would be, why?
Why, you ask. I have a few opinions on the matter, like ethics, profits or sometimes to no fault of their own the health care industry standards of their state/country/etc. For example, like Mary's comment below about Canada's healthcare system. My question is what can we, as patients on the front lines, do to make it better?
I think the power to change anything will all start from discussions. Discussing it here, there and everywhere. I can tell you that I've called my insurance company's case manager many times to tell them, or maybe I should say “threaten them”, to stay out of my health care decisions. Believe it or not, it actually works for the most part! I certainly wouldn't advise this approach be taken by everyone, but the only thing that we control is our own voice on the matter.
Right on for hospital stays!!! When I get to the point of needing IVs, I know it's time to SLOW DOWN. Do I slow down at home? Heck no. I've got stuff to do around the house, parties to go to, etc etc. Being in is a great way to "cage the tiger".

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
1 reply · active 706 weeks ago
"cage the tiger" - I like that!! I also completely agree with everything you said :)
I live in Nova Scotia, Canada. In my province, it is next to impossible to get a hospital bed (the government cut funds in the 1990s and it is truly impacted care in a negative way - lack of hospital beds, fewer nurses, etc). As much as I dislike being in hospital I've always done better in hospital where I can rest and get the necessary physio (clapping) treatments that are harder for me to done on my own. I agree hospital care vs home are better in the long run, as this has also been my experience. Home IVs do help me, but I feel that I'd receive better care in hospital. Perhaps, even if I could go in for a week or so or longer and then complete my treatments at home. It used to be possible for me to go in for three weeks at a time.

Feel better each day, Ronnie. :o)
1 reply · active 706 weeks ago
That stinks Mary! It is SO SAD when politics/funding is put before what's best for the patient.

Thank you so much for this insightful comment :)
Ronnie,

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
1 reply · active 706 weeks ago
Mandi does hand pound me from time to time and I'm sure would be willing to do it much more often. I just feel bad making her whack me for 30 minutes as it's not something that's easy to do :)

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