What is your clinics method of treatment?

[MCPappy]

Hey everyone. I was just wondering how different peoples CF centers deal with their treatments when they get sick. I feel like the clinic I go to is very quick to just throw you in the hospital without making any attempts to help you get better before having you go in for IV's. It frustrates me because before I went to college and was at another clinic they were much more accomidating and willing to try alternatives when i got a cold.

So anyway the reason I am asking this is that I am home from college this summer and have gotten a cold. Yesterday I was feeling real bad and just kinda took it easy, rested, and vested extra. I emailed my nurse and told her what was going on. Today I am feeling much better but i still want some cipro to make sure i can get rid of the cold. However, I show up as being resistant to cipro in my sputum cultures. BUT it alwasys works for me even after i have shown resistance which i have heard that it still can work. I dont really know what to do because i know i dont need to be in the hospital but i do need something to help me get better but my clinic just wants to put me in the hospital. Grrr


So any suggestions or comments on how your clinics deal with you getting sick would be great.

Thanks everyone!

 

[anonymous]

My clinicin VA is pretty slow to put you in the hospital, but I guess it could be because I was doing relatively well until recently. I asked for the IV's last time.

John

 

[JazzysMom]

It depends on how bad I let myself get before going to them. If its just starting & we feel I can handle it at home then I go on oral antibiotics. Usually by the time intervention is needed I am do for iv's tho. My doctor doesnt like me going on them if I dont need to & I need to get a jump start in the hospital when I do so its extra hard for me.

 

[CowTown]

Hi Melissa,

I used to try very hard to stay away from the hospital and believed going in was a bad thing. Several years ago I started to feel that going in for tune ups could actually be a really good maintenance thing. I typically feel much better and more clear after a tune up, which would also be much quicker than if I stayed at home with oral antibiotics.

I think you and I go to the same docs (same as Amy) at USC. I learned to accept the tune ups and think they can help you reach your base line quicker sometimes, which is a good thing. And yes, my docs seem to put me in quickly instead of home oral meds now that I'm older.

Good luck!

 

[thelizardqueen]

I had to fight with my doc and write him a strongly worded email before he would put me in hospital back in May. He likes to try all sorts of things before even considering admitting me. He knows better now that I know my body better then he.

 

[anonymous]

Hey girl,

Rao is extremely aggressive with IV antibiotics. He keeps up to date on the latest research, and unfortunately, it shows that agressive treatment preserves lung function.

We are about to fall on some great CF treatments in the next years, and you need your lung function to be in peak shape to take advantage of it.

Rao told me that he is considering having me in for antibiotiocs once a year whether I'm sick or not. I'm not sure if I'm OK with that, but I'll listen to his reasoning.

My understanding is that in some Scandanavian countries (maybe CFers from there can verify) are in the hospital twice a year for IV's regardless of health status. And lung functions are pretty high over there as a result.

The bottomline is this - you make your decisions. Be sure to ask Rao lots of questions - and ask again if you don't understand the answers. Get all the information that you can, and make your decision based on that.

But my gut is, if you're resistant to Cipro, it's time for IV's. There's no sense in letting your lung infection eat up more of your lungs while you try a med that may or may not work.

 

[anonymous]

ooopsie that was me, Amy

 

[catboogie]

hey,

you don't have to take my advice but here's what it is, it has worked for me time and time again, and i used to be a cipro junkie, too <img src="i/expressions/face-icon-small-smile.gif" border="0"> : try to hold off on your feeling of needing something with every cold to help you get over it and try to have that "extra something" come from things that you can do yourself. i don't know your situation specifically, but i know that feeling after you've been sick and you just feel like your lungs are overwhelmed.

what you did, doing your vest extra for a couple of days--do it extra for a week, at least. take a lot of vitamin C, make sure you are on top of all your regular things, and start being active/getting exercise as soon as you have some energy back from your cold. from an early age i was instilled with the idea that my body (especially my lungs) could not heal themselves because of my CF. but that is not necessarily true. it just takes us a little longer to recover, and if you can stay on top of airway clearance, you can keep your lungs steady while your body has time to recover. i know it is hard work, but you may be surprised. i have felt a greater sense of control over my body since i started thinking this way. and i have been on far less antibiotics, which is always a good thing.

by the way, when you say that your doctors before used to have more things to try before IVs, what kinds of things are you talking about? just the cipro? (keep in mind that taking only one antibiotic against your, i assume, pseudo, builds up resistance more quickly.) or did he have you try tobi or another inhaled antibiotic? just curious...

laura, 27

 

[MCPappy]

when i said my old docs used to give me more things to try i meant they were just alot more willing to try other methods instead of sending me straight into the hospital. At the time i was on tobi every other month, and maybe pulmozyme(sp) im not sure though casue it was in HS.

I do try and get rid of colds and things on my own and i used to be able to in HS but since i moved to LA and college i think the air is so bad i just cant get better and i just end up in the hospital.

I really dont like taking cipro all that much but it beats going to get IV's... I dont know its kinda like at least now i have time to go in and get them when i am not in school or going to miss anything but i dont really like the whole go in when your not sick thing...

 

[catboogie]

wow, yes, i can imagine the air in LA would have a big negative impact on your health. <img src="i/expressions/face-icon-small-sad.gif" border="0"> that's too bad. i hope you can come up with some kind of treatment compromises with your doctor. good luck!

laura, 27

ps--when you said HS i thought you meant hypertonic saline instead of high school. <img src="i/expressions/face-icon-small-smile.gif" border="0"> i was thinking, wow, you mixed pulmozyme with saline? too much 'cf lingo' in the brain that i forget common sense!