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What things did CF Center tell you to do/not do re avoiding infections
- Thread starter Aboveallislove
- Start date
Hi meme. I didn't save all my research and for that I apologize. Too many computers with different bookmarks! I remember generally searching for the internet for information about salt water pools, how they worked and what mechanisms they used to cleanse the pool water. I also recall discovering that there was a significant difference between the salt water in the ocean, which is an incredibly efficient bacteria cleaning machine, and the salt concentrations used in salt water pools. Hypertonic Saline is great - and was the result of the Australian experience with ocean water. But salt water pools do not reach the same levels of salt or at the same rate as oceans. At that point, I posted a response that can be found in an older thread . . . . http://forum.cysticfibrosis.com/threads/56122-Pseudomonas?
I would also recommend you try sending a private message to JORDYSMOM who worked for a pool service company and had some experience with salt water pools. Her post on the topic appears here: http://forum.cysticfibrosis.com/threads/29337-Swimming-in-a-saline-saltwater-pool
If you still find yourself needing more information, just let me know and I will be happy to try to track my previous research. Do understand, maintenance for any pool appears to be the major influencing factor for safety. I would simply test the water in your salt water pool before swimming. Check with the pool maintenance company if you have one. Let them know your concern and ask how to keep it bacteria free or how to test it before swimming. Frankly, I personally believe swimming may be one of the best exercises possible for keeping up lung function.
I would also recommend you try sending a private message to JORDYSMOM who worked for a pool service company and had some experience with salt water pools. Her post on the topic appears here: http://forum.cysticfibrosis.com/threads/29337-Swimming-in-a-saline-saltwater-pool
If you still find yourself needing more information, just let me know and I will be happy to try to track my previous research. Do understand, maintenance for any pool appears to be the major influencing factor for safety. I would simply test the water in your salt water pool before swimming. Check with the pool maintenance company if you have one. Let them know your concern and ask how to keep it bacteria free or how to test it before swimming. Frankly, I personally believe swimming may be one of the best exercises possible for keeping up lung function.
A search of the Cystic Fibrosis Foundation website materials brought up these recommendations from 2003. They do not specifically mention salt water pools, but discuss pools in general, http://www.cff.org/UploadedFiles/tr...mmendations-for-Patients-With-CF-May-2003.pdf
I have reproduced the section on pools here:
2.2.3. Colonization of Whirlpools, Hot Tubs, Swimming Pools, and Dental Equipment Colonization of whirlpools (ie, hydrotherapy pools), swimming pools, hot tubs, and dental equipment with P. aeruginosa has been evaluated. Whirlpools and hot tubs both were found to harbor P. aeruginosa, while chlorinated swimming pools did not.189 Outbreaks of folliculitis, nodular lesions, and more serious infections caused by P. aeruginosa have been associated with hot tubs and whirlpool bathtubs in the community and in hospitals.190,191 Pools must be well chlorinated according to standard recommendations to prevent P. aeruginosa contamination.191Dental equipment can be colonized with P. aeruginosa. Jensen et al. demonstrated that a patient and dental equipment shared the same clone.192 Standard cleaning and disinfection/sterilization procedures of dental equipment will prevent patient-to-patient transmission of potential pathogens.
The footnote 191 is: 191. Fiorillo L, Zucker M, Sawyer D, Lin AN. The Pseudomonas hot-foot syndrome. N Engl J Med. 2001;345:335-8.
I have reproduced the section on pools here:
2.2.3. Colonization of Whirlpools, Hot Tubs, Swimming Pools, and Dental Equipment Colonization of whirlpools (ie, hydrotherapy pools), swimming pools, hot tubs, and dental equipment with P. aeruginosa has been evaluated. Whirlpools and hot tubs both were found to harbor P. aeruginosa, while chlorinated swimming pools did not.189 Outbreaks of folliculitis, nodular lesions, and more serious infections caused by P. aeruginosa have been associated with hot tubs and whirlpool bathtubs in the community and in hospitals.190,191 Pools must be well chlorinated according to standard recommendations to prevent P. aeruginosa contamination.191Dental equipment can be colonized with P. aeruginosa. Jensen et al. demonstrated that a patient and dental equipment shared the same clone.192 Standard cleaning and disinfection/sterilization procedures of dental equipment will prevent patient-to-patient transmission of potential pathogens.
The footnote 191 is: 191. Fiorillo L, Zucker M, Sawyer D, Lin AN. The Pseudomonas hot-foot syndrome. N Engl J Med. 2001;345:335-8.
you may find these handouts from CF Foundation useful. They are based on the most recent guidelines for infection prevention & control: http://www.cff.org/LivingWithCF/InfectionPreventionControl/TipSheets/
believingjesus
Banned
you may find these handouts from CF Foundation useful. They are based on the most recent guidelines for infection prevention & control: http://www.cff.org/LivingWithCF/InfectionPreventionControl/TipSheets/
Thank you for these tips. I do however feel that the CFF should not only tell people with CF and their families in 2015 that they should just cover their cough, stay away from others with CF at least 6 feet, wear a mask at appts., wash hands frequently, do not be around dirt or dust frequently, the basics. I guess I didn't think to look up journals of medical reports to figure out how to live. We went to appointments every 3 months forever and did everything they told us to do. The CFF should actually should go a step further on their tip sheets and go in detail as to what a person should do in addition to all they have to do to stay healthy. They basically should say: Do not ever play in leaves, do not go in or dig around a garden, never swim in a lake, don't go around ponds, never go in a hot tub, watch your fruits and vegetables very carefully as if they have any sign of rot you can not eat it and better throw away, put Clorox down your drains as there could be mold, stay away from dust, hopefully you live in a safe home that is free of any mold or bacteria, wash or change out your shower heads frequently, disinfect your door handles and handles of everything but not with a disinfectant as that could have bacteria in it also - use Clorox or soap and water, do not ever drink water from anything that does not have a filter on it, clean your nebs always by boiling or using another form of sterilization, do not use baby wipes as they could be infected, do not use Scope as it was once infected with bacteria, never own a reptile, do not own a dog or cat that sheds much at all, never play in the mud or in a sandbox or in the dirt, clean, clean, clean, and clean. I suspect everyone who has CF or the family of a person with CF has to become OCD.
The CFF should tell everyone these little tips as it is a little late when you get sick.
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Wow! I really failed that list-haha! I do stay away from others with cf, except my sister of course.
Also, Welshwitch, I had to laugh at your reply. I had to read it twice, because I questioned whether I wrote it! I am also 35 and in great health also (Praise God!) It seems we have a lot in common!
Also, Welshwitch, I had to laugh at your reply. I had to read it twice, because I questioned whether I wrote it! I am also 35 and in great health also (Praise God!) It seems we have a lot in common!
W
windex125
Guest
I as well never came home with any instructions from any of my doctors. I started seeing a CF center at 25 and saw a pediatrician for a long time, till they started transition to adult care. We were living longer and we needed that change. Before 25 only saw a reg. MD My case is very complicated to say the least. I was diagnosed as a baby then un-diagnosed at age 8 for borderline sweat tests. I come from a home where both parents smoked alot and they never cut down. Needless to say both died of lung cancer. When I finally started at a CF center, Finally had blood work done as a adult which confirmed my 2 mutant genes then went on to have a nasal chloride test done at UNC that confirmed CF I am the only child out of 4 to hv it. Most of my problems were always lung related, I now only have one functioning lung my pfts are in the high 40's I contacted MAC abt. 10 yrs. ago and treated only for abt8mts. till the drugs turned me a nice orange color.
I had a port put in 10yrs ago as well, best decision ever. The doctor told me to stop gardening and get rid of all house plants. I've had 3 different dogs over the past 24yrs. this last one being a German Shepard who sheads every single day, though my husband in charge of vacuuming every day he has kept his word so far. I just celebrated my 60th birthday in Dec. why I am still here?? when the first 25yrs of my life I really did not get the proper care, I have no idea? I loved to clean as a child, I know strange obsession, which my siblings and mother thought was great. I wld cough and cough and they wld all say see this is good for you gets all that junk out. So I say get rid of any guilt anyone is feeling abt not knowing certain things, we trust our medical people sometimes alit too much as they are more educated then we are. But also don't be afraid to ask questions, do not keep yr. children in a bubble but follow common sense to keep them well. Never ever treat them as a sick child, as there will come a time and they will get on the computer and do some research and get worried. I wish the CF foundation wld update some of their facts first of all there are more than 30,000 and we are living beyond their age of 38 was the last I read I think? I happen to love this sight, I have learned a lot from others. Though we are all different in the disease it's a good thing to have other people's experiences. Pat
I had a port put in 10yrs ago as well, best decision ever. The doctor told me to stop gardening and get rid of all house plants. I've had 3 different dogs over the past 24yrs. this last one being a German Shepard who sheads every single day, though my husband in charge of vacuuming every day he has kept his word so far. I just celebrated my 60th birthday in Dec. why I am still here?? when the first 25yrs of my life I really did not get the proper care, I have no idea? I loved to clean as a child, I know strange obsession, which my siblings and mother thought was great. I wld cough and cough and they wld all say see this is good for you gets all that junk out. So I say get rid of any guilt anyone is feeling abt not knowing certain things, we trust our medical people sometimes alit too much as they are more educated then we are. But also don't be afraid to ask questions, do not keep yr. children in a bubble but follow common sense to keep them well. Never ever treat them as a sick child, as there will come a time and they will get on the computer and do some research and get worried. I wish the CF foundation wld update some of their facts first of all there are more than 30,000 and we are living beyond their age of 38 was the last I read I think? I happen to love this sight, I have learned a lot from others. Though we are all different in the disease it's a good thing to have other people's experiences. Pat
I wasn't DX til 15 so I did all the things listed not to do. I was dumped in manure, ponds, played in mud, leaves etc. I was exposed to every germ you can think of. I rode horses and competed in different horse shows around California. I had a flash back today when I use to have that inflatable furniture that I blew up by myself and my lungs. Dont avoid everything! I had a great childhood and I was never sick. It wasn't until I was DX because polyps that I started to see the disease. My parents didn't even believe I had the disease. I still Dont let this disease hinder me. I'm 29 and I'll go swimming in a lake or do what I want to do. Once I let cf hinder me, it will control me. Its up yo you how you choose to live life but its my goal to not let it take over my life and stop me from a normal life with normal dreams. Just some food for thought. Not everyone will agree but to each their own. This is just my experience
J
Jeana_Lynn
Guest
Wow! There are so many things on the "list" that I still do as a 38-year-old adult with CF. I soak in hot tubs. I have pets--two dogs, two bunnies, two horses and I used to have a salamander. For years, I had cats until I found out I was allergic. I eat raw mushrooms. I don't use a humidifier, although I used one when I was a child. I don't personally have toys that I play with in the tub, but my children do. (They aren't the ones with cf though.) Mostly you just have to find a balance between quality of life and quantity. If I could have avoided hot tubs and pets as a child, I wouldn't have. Some things are worth having regardless.