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flutter
- Thread starter anonymous
- Start date
serendipity730
New member
Well, that certainly isn't the attitude to have! I have been fortunate in that I am 22 and still have good pft's, but I take good care of myself. Ten or so years from now, you are going to be sorry that you didn't take good care of yourself when you were younger.
~ Mary
~ Mary
I also did no treatments whatsoever all my life till i developed b.cepacia 7 1/2 years ago. Then after having 2 embolizations 2 years ago, i finally woke up. I was doing very well till the cepacia showed up and then all heck broke loose. I also thought that since i was so healthy not doing treatments, that maybe not doing treatments was what was keeping me well. I was told all my life i had very mild cf, which was probably why i did so well for so long. NOW things are different. I do my vest everyday, and generally take better care of myself because like another poster said ....if cf starts to get the upper hand ( like it did with me at one point), you will change your tune fast like i did. I dont know if doing treatments would have made any difference for me or not, (I know doing treatments wouldnt have helped me avoid getting b.cepacia), but what is important is that i woke up and started doing them now, because my life was on the line, and i decided it was time to take the bull by the horns ( so to speak), and start getting the control out of cf's reach for as long as i can. Doing the vest has made a big difference in my life and my health. You may want to consider using some form of chest percussion, you dont see results right away ( like working out) , but the results are there when it counts.
~Diane 39 / cf / diabetes / b.cepacia
~Diane 39 / cf / diabetes / b.cepacia
princessjdc
New member
I agree with diane, I was the same way, I have mild cf and the treatments and such that they would have me try I thought was point less and I wouldnt do them hardly at all or not at all. Then Last year I woke up and realized that I better take better care of myself and do my treatments that the doc. prescribes because in the long run it does help. Since last year Ive read a lot about cf and all my med and treatments and what they do for me. Maybe you should do that. One thing I learned about Pulmozyme was that it breaks the cycle of CF Progression and it thins the mucus in your lungs. This way your airways arent as blocked and your lungs work better. Getting rid of the mucus may lower your chances of getting a serious lung infection. And I learned this from reading a brochure at the place where I get my meds. What took me to wake up last year was when I had to get my first pick line in. That scared me enough to take my treatments and meds. So my advice, get a head start and stay on top of your cf. and do your treatments.
Jennifer 24 w/cf
Jennifer 24 w/cf
this is a bit off track, but Diane, how do you get b. cepacia? i have read some about it and it sounds like something that can only be contracted from others with it? please enlighten me, cause i've never heard of someone developing it as late in life as you did. you seem to be doing very well with it, which is AWESOME! thanks for any info. you can give!
It is a mucus clearing device that is small enough to be held in your hand & is shaped somewhat like a short, fat, pipe?? You blow into it & it has a little steel ball that vibrates inside it & this vibration is supposed to also vibrate all the way down to your lungs, thus shaking up the mucus.
That was the most foolish thing ive ever seen posted. You have the same attitude as my 23 year old cousin with CF. He thinks he's healthier than me because i take care of myself and do treatments and go for the cleanouts every 6 months. Im not doing the treatments because im in desperate need of them yet, im doing them so i can live longer and healthier. Im 22 by the way <img src="i/expressions/face-icon-small-smile.gif" border="0"> My PFTS are in the 90 %..and its because i use every piece of machinery i can get my hands on!
Try it sometime..you seriously will not be wasting your time or money
-angelique
Try it sometime..you seriously will not be wasting your time or money
-angelique
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>this is a bit off track, but Diane, how do you get b. cepacia? i have read some about it and it sounds like something that can only be contracted from others with it? please enlighten me, cause i've never heard of someone developing it as late in life as you did. you seem to be doing very well with it, which is AWESOME! thanks for any info. you can give!<hr></blockquote>
b.cepacia can be acquired a number of ways for cf patients . Unfortunately i got mine in the hospital when i went in electively for sinus surgery. I hadn't been in hospital for years, and had very minimal lung involvement. My fev1 was 91% and fvc was 100%. I had no idea about anything like cepacia. Never heard of it till i got admitted for surgery and they asked me if i had it. I asked what it was because i had never heard of it. After my surgery, i started getting a lung infection, which i thought might be reasonable since i had just had surgery and felt like crap. The only wierd thing was i never seemed to get better. No matter what antibiotic my doctor put me on, worked for about a week then the whole problem would resurface again. The constant coughing, the unbearable tiredness ( just taking a shower was exhausting) the fevers that started same time every day. Then finally i had a sputum culture done and b.cepacia showed up. I was so devastated , and so angry that noone even told me about cepacia or how it can be transmitted or how i could have avoided it. I went in electively to have a surgery to help keep my lungs as well as they were, and i came home with something that could destroy them<img src="i/expressions/brokenheart.gif" border="0">
After knowing what i do about b.cepacia now, i come to realize the hospital is the easiest place to acquire it.
It can be everywhere and on anything you touch. It can live in moist places for a year or more ( showers that dont get properly disinfected in the hospital, Bedrails that arent properly disinfected,The phone, there are so many hiding spots for b.cepacia amoungst other things) Had i known what i know now i would have taken disinfecting wipes with me when i went in, and wiped everything i touched or went near with them. My fev1 now is 45% and my fcv 67%. That is partly my own fault for not doing treatments as soon as i was diagnosed. When i had some major bleeding that required 2 pulmonary embolizations i woke right up and started to do what i can to stay as well as i can.
~Diane 39 / cf / diabetes / b.cepacia
b.cepacia can be acquired a number of ways for cf patients . Unfortunately i got mine in the hospital when i went in electively for sinus surgery. I hadn't been in hospital for years, and had very minimal lung involvement. My fev1 was 91% and fvc was 100%. I had no idea about anything like cepacia. Never heard of it till i got admitted for surgery and they asked me if i had it. I asked what it was because i had never heard of it. After my surgery, i started getting a lung infection, which i thought might be reasonable since i had just had surgery and felt like crap. The only wierd thing was i never seemed to get better. No matter what antibiotic my doctor put me on, worked for about a week then the whole problem would resurface again. The constant coughing, the unbearable tiredness ( just taking a shower was exhausting) the fevers that started same time every day. Then finally i had a sputum culture done and b.cepacia showed up. I was so devastated , and so angry that noone even told me about cepacia or how it can be transmitted or how i could have avoided it. I went in electively to have a surgery to help keep my lungs as well as they were, and i came home with something that could destroy them<img src="i/expressions/brokenheart.gif" border="0">
After knowing what i do about b.cepacia now, i come to realize the hospital is the easiest place to acquire it.
It can be everywhere and on anything you touch. It can live in moist places for a year or more ( showers that dont get properly disinfected in the hospital, Bedrails that arent properly disinfected,The phone, there are so many hiding spots for b.cepacia amoungst other things) Had i known what i know now i would have taken disinfecting wipes with me when i went in, and wiped everything i touched or went near with them. My fev1 now is 45% and my fcv 67%. That is partly my own fault for not doing treatments as soon as i was diagnosed. When i had some major bleeding that required 2 pulmonary embolizations i woke right up and started to do what i can to stay as well as i can.
~Diane 39 / cf / diabetes / b.cepacia
After reading my post i wanted to add that im not trying to scare anyone who has to be hospitalized. Just be as careful as you can and take precautions. If you forget to bring disinfecting wipes then ask the nurse for a box of alcohol pads. wipe down anything you will touch, and wash your hands often , especially when returning to your room when you've been out of it. A little prevention may do wonders<img src="i/expressions/face-icon-small-happy.gif" border="0">
~Diane / 39 / cf / diabetes / b.cepacia
~Diane / 39 / cf / diabetes / b.cepacia
and tell everyone that goes into your room to wash their hands!!
diane sometimes i feel like telling cleaners to not clean my room once im in it. i hate having my cleaning work undone. they use the same dirty rag and dirty water to clean every room. all they use is ajax to clean counters which doesnt have any anti bacterial properties. they dont wash their hands or swap gloves for each room either. the rooms never get vaccumed and only get sweeped once in a blue moon. the rest is mopping with a dirty mop and water. ive found dirt on the floor after they have mopped which wasnt there before, meaning it was transferred from another room. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
diane sometimes i feel like telling cleaners to not clean my room once im in it. i hate having my cleaning work undone. they use the same dirty rag and dirty water to clean every room. all they use is ajax to clean counters which doesnt have any anti bacterial properties. they dont wash their hands or swap gloves for each room either. the rooms never get vaccumed and only get sweeped once in a blue moon. the rest is mopping with a dirty mop and water. ive found dirt on the floor after they have mopped which wasnt there before, meaning it was transferred from another room. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
kylie,
i often tell the cleaners not to worry about cleaning my room. some of them get annoyed but i'm doing it for my health so i don't care! the way they touch everything, and you think how they've touched everything in other peoples rooms....EW!!! especially when someone else on the ward has an infection you know about. so dont feel bad about telling them to get lost. (the only problem is i'm sure they do it when i've left my room!)
arla 18 w/cf no cepacia
i often tell the cleaners not to worry about cleaning my room. some of them get annoyed but i'm doing it for my health so i don't care! the way they touch everything, and you think how they've touched everything in other peoples rooms....EW!!! especially when someone else on the ward has an infection you know about. so dont feel bad about telling them to get lost. (the only problem is i'm sure they do it when i've left my room!)
arla 18 w/cf no cepacia
haha kylie i've had that exact same probem!! she kept asking me questions about myself and i really didn't want her there. some of the cleaners are lovely, and i get on with them really well , but others just dont seem to realise that your in hospital for a reason and won't give you any space.