Healthy Hospitalizations

[anonymous]

Hello-I was wondering how many of you out there are fairly healthy but go in for "cleanouts" periodically just as a prophylactic measure. Up until this point I have always only been hospitalized if I am sick, pft's down, etc. However, lately I have been hospitalized more than normal- (brief history: hospitalized about once every 3 years due to maybe a cold that got out of hand, flu, etc) but in the past 5 years i have been hospitalized about 6 or 7 times....and my doctor said for the first time back in october that i shold think about maybe just scheduling a time that would work for me to go in this winter. It makes sense, I mean i dont feel as great all the time as i used to, and i dont want to get sick in the summer and have to go in then, but i guess i am just trying to avoid being on a "regular" hospitalization schedule, part of me wants to be in denial and only go in if i am sick. Plus i hate being in the hospital and I live in Boston where they just identified this new horrible strain of cepacia "dolosa" that ran rampant on 7 people, and although anyone with it is quarantined and even in a different clinic area, i just dont want to be in a hospital where i can catch that. I already have regular cepacia, and although the hospital swears they clean everything blah blah blah...we all know there is some slacking. Anyway, i am getting of course, was wondering how you all felt about this. as a sidenote- has anyone outside boston heard of this cepacia dolosa, it made news here (it was only at Children's- my hospital), but it certainly is disturbing.caitlin20 with cf

 

[anonymous]

Caitlin, I live in Canada and we were told that they will avoid, whenever possible, hospitalizations due to cross-contamination. If you are not comfortable being admitted then you should talk to the dr about it.AM

 

[anonymous]

Who do you see in Boston? I also live near Boston, I see Dr. Ruddy. I've only had to go into the hospital twice, once in each of the last two years. Both times I wasn't sick, but my pfts were down. It's kind of odd being in the hospital and not really sick.Jim26 w cf

 

[anonymous]

I have also wondered about being hospitalized when not really sick. My daughter,6 at the time, was hospitalized for the first time last Feb. She was pretty sick at the time. Since then she has had 3 more cleanouts and might need to go in next week. Each time her pft's had gone down and her cough up a little, but not like in Feb. I always wonder if it's really needed. Part of me thinks it is, and another part is not so sure. Her docs think it is good to be agressive because her #'s go down so much and so fast. I'm intersted in what others are doing. Michelle

 

[anonymous]

Jim- i see dr. dovey in bostonI am most concerned about going into the hospital because of catching things i dont already have, i usually go home on home cleanouts after about 4 days but even those 4 days make me uncomfortable. It is too bad but for us with CF other CF people might as well have the flu- that is the type of risk we sometimes can be to eachother, only worse, because we can give eachother bacteria, like how i most likely caught Cepacia. ugh. Anyway, i am going to talk to my doctor about it i guesscaitlin

 

[Diane]

Hi Caitlin <img src="i/expressions/face-icon-small-smile.gif" border="0"> As you already know i try my darndest to avoid going in the hospital at all costs. I know that i got b.cepacia while in the hospital and now when i am sick and need iv antibiotics i do them at home. The only way i will agree to go in hospital is when it is something that cant be done at home. Unfortunately when in a hospital you are so exposed to all sorts of other bacteria and who knows what. Yo have to be afraid to touch anything even the bedrails, because noone cleans or disinfects them properly. One time while i was in the hospital, they switched me to another room after cleaning it, and after being in there a few hours i noticd there was phlem on the wall, and a tiny bit of blood on the floor. HOW IS THIS CONSIDERED CLEAN? No wonder people with cf come home from hospitalizations with more than they went in with. Any way, if you must go in, remember these small pieces of good advice. Wash your hands VERY OFTEN, take along some of those antibacterial wipes with you and clean the bedrails, phone, doorknob, handles on the sink in the bathroom, whatever you will be touching. If you forget the wipes ,ask the nurse for some alcohol swabs. Seems like a lot to have to do, but it is WELL worth it. I wish i knew how dirty hospitals really are, i might have been able to avoid getting b.cepacia. Take care and be careful

 

[anonymous]

Hi Caitlin, I live in CO and am usually very healthy, but when I started college I started getting run down and sick more often. Just from getting the nack of caring for myself... Sometimes I schedule a tune up for myself if I have a lot of stuff to do in the near future. It's especially helpful if you are in school. In Dec. I went in for a week before my break so that I could do all the things I had planned and feel great in the mean time. It's really up to you. It's part of growing up and you learn how to tune in to what your body needs even more. My clinic will only admit about four patients to the hospital at a time, and fewer if it's flu season or there is something else going around. Ask your doc if there is an alternative hospital you can go to if you're worried about contamination. Getting IVs can be done at home, but what you really benifit from at the hospital is the agressive airway clearance. If you can do it four times a day on your own, then ask your doc about that, but you HAVE TO ACTUALLY DO IT. Even in if you are healthy for long periods of time, once a year is still a good idea. There are so many other things going on with your body, and it's nice to get everything delt with at once.Debbie22 yr old w/ CF

 

[anonymous]

MY CF doctors are not crazy about regular clean outs. They say if you come in and spend the time (say a week) when your not really sick, as soon as you leave you may catch something and get sick for real and then have to come right back to the hospital. They think I should wait until I really need it.

 

[anonymous]

Thanks for everyone's advice. Debbie i think it is interesting that your clinic will only admit a certain amount of patients at a time. God, i remember the days when I was in the same room with a CF person, sharing it, uuuugggh, or when they used to encourage that I hang out with other sick CF kids in the activity room, and my mom used to not want me to, and the nurses would roll thier eyes. Diane i was wondering when you do home cleanouts are you able to begin them right away at home? I always do my antibiotics at home but unfortunately about 3 or 4 days have to be spent in the hospital initially to get everything set, i.e. the levels right.

 

[Diane]

Yes i start the iv treatment at home. Usually my nurse at the clinic will put in a picc line (if she can get it to thread well) if not i try to stick it out with peripheral lines. They call the home infusion team and let them know i am starting iv treatment, The medicine arrives first and usually that night a nurse comes out and inserts an iv and the treatment starts. I have done it enough times before , that they dont have to go thru the whole protocol of explaining the medicines to me or anything like that. Then the nurse comes over every so many days to change the dressing draw blood,or insert a new iv, or whatever i need.