Clarification, please!

[harrabell]

My daughter is 9 months old, and diagnosed by newborn screen. I have been reading whatever I can and asking a lot of questions, but I seem to still be foggy on a lot of things, and I am wondering if someone can give me a clearer picture. Let's see if I can explain my question now! I am confused about how exacerbations/ infections come about and what it has to do with the particular bacteria you are culturing. If you aren't culturing anything and you get sick, the excess mucous can still cause an infection, right? And if you are culturing something like pseudo, does that mean if you get sick you are more likely to have an exacerbation, or can the simple fact that you are culturing something cause lung damage? And the excess mucus is the reason that CFers start to colonize bacteria, right? So, why can't I assume that if we keep up with her CPT and meds, she can keep enough mucus out of her lungs to avoid colonizing anything? I am so confused about the actual process of it, that I am not sure I even explained it correctly! Any clarification would be very helpful!

And a second question: what types of situations/ locations should we avoid to limit the possibility of catching a nasty bacteria? I sort of assume things like hot tubs/saunas. Is that correct?

Thanks in advance!
Jessica

 

[Twistofchaos]

Hi there,

don't try to go overboard in the learningprocess. You'll learn more day by day, year after year or as things come up for your daughter. If you try to read everything you can way ahead of time you run the risk of overwhelming and greatly scaring yourself while many things do not even reflect on your daughter and maybe never will. Each person with CF is much different and medicine is constantly improving.

But I'll try to answer some questions too.
Indeed we constantly produce mucus the same as a healthy person does. A lot more than people think but most comes from the nose and gets swallowed throughout the day. But for a CF'er it doesn't get transported away very easily as it's thicker and so can get stuck more easily. That's bad because it's moist and 37 degrees Celsius so perfect for bacteria to grow. Indeed sometimes "something" is going on and we might culture something but that doesn't have to be so bad untill something gets really stuck somewhere in the lungs and can't be coughed out or otherwise gotten rid of by the body. Then we might get an exacerbation.
So we can culture something, most of us will culture something always and ofcourse that isn't the ideal situation but it doesn't have to mean lungdamage right away.
Yes if you can keep the mucus moving then you reduce the chance of an exacerbation. That can be done through her therapies and when she's a little older exercise.
And to answer your final question, I really do not believe we should be kept in a bubble and specifically hot tubs and sauna's are fine. There's indeed a risk of going full paranoid with this but most likely she will not catch anything until she's "ready" and then it's really hard to avoid anyway.

Mainly, enjoy your daughter and let her and yourselves live a good and worryfree life and deal with things as they come along.

 

[Printer]

Jessica:

I hope that your child is being seen at an APPROVED CF CENTER BY A CF SPECIALIST. If she is not, she should be.

The CF TEAM there will sit with you and explain and answer your questions. We have some really kind and knowledgable people out here but they/we are no substitute for your CF TEAM.

Bill

 

[littlemisssilly]

It sounds simple in theory that if people with CF just keep up with treatments, exacerbations and progression of CF will somehow subside. I'm sure all CFers and their loved ones wish this were true. Unfortunately, the nature of CF is such that most people with CF will never be able to fully clear their lungs from the never ending production of mucous. The therapies / treatments for CF have imporved greatly over time but, they only go so far in just alleviating some of the symptoms of CF. Also, a person's response to CF therapies is so individual eg some get benefit from hypertonic saline, some cannot tolerate it; some benefit from the Vest, some prefer other devices for clearing mucous. Although, I think all the CF community is in agreement that physical activity is great for aerobic fitness and mucous clearance.

I'm not saying this to distress you, I'm just trying to answer some of your well thought out questions. As said before, no two cases of CF are alike, even twins will see varying courses of CF progression despite carrying the same CF mutations. As your child gets older, you will learn how productive she is when she is 'well' or when she is experiencing an exacerbation (which can be triggered by a virus / cold or just CF itself). CF is one of those ilnnesses that progresses and changes over time as we age so, naturally, our responses ie treatments need to adapt too.

One thing I will add is, I agree in part with the notion not the 'wrap children in a bubble' ie, let her be a child and play and roll in the sand and even grass but CF lungs need protection from more risky exposure to pathogens that our lungs just cannot clear (and that current treatments just cannot erradciate) so, take a very cautious approach to others with coughs / colds ie, keep her away from others' viruses. I also respectfully disagree with the statement that hot tubs and saunas are fine. In my opinion they are not. Anything that harbours heat and stagnant water is a breeding ground for pseudomonas and the like. Yes, pseudo is everywhere but it is more so in hot tubs, saunas etc. It is a known pathogen to CF that causes lung damage and is impossible to erradicate once acquired. And yes, almost all CFers are colonized with it eventually but why take the added risk of exposure to an environment that is known to carry a high bacteria load??

Lastly, I also avoid anything that disperses large amounts of fungus through the air, esp activites such as lawn mowing, house renovations / demotlitions. Like I said, these pathogens are everywhere and cannot be avoided but, I try to avoid environments which are known to carry / disperse larger than normal amounts of the pathogens through the air.

Hoped I haven't ranted too much. I'm sorry if I have overwhelmed you. Even us 'old' Cfers are still learning about CF and how is affects us each day so, give yourself time to learn and adjust.

 

[AmalynRose]

I would stay away from hot tubs due to all the moisture and high amounts of bacteria in the water. I would think a wood sauna would be ok because they are more of a dry heat and the wood is usually treated, unlike a tiled steam room. However, I am by no means an expert and would suggest asking your child's doctor later when your daughter is older, since she is pretty young for those things at this point.

I agree that you don't want to keep your child in a bubble, but make sure friends and family understand that if they have been sick or been around someone who was sick within the last few days, they probably should not come over to visit. CF or not, sick infants are not happy infants!

 

[welshwitch]

No one ever said anything to me about no hot tubs/saunas when I was growing up. My parents were obsessed with air quality and forbade me to go to college in LA (but that's another discussion LOL). I culture bugs, though now, although who knows where I got them ! Probably anywhere. I still have a great lung function and I'm 33 so they haven't given me too much trouble. I second the idea of not letting your daughter live in a bubble.

 

[JENNYC]

All sound like good suggestions to me...I do want to add no humidifiers. And we also got rid of the carpet in the bathroom (which I was gonna do anyway regardless but definitely a moisture holder). It sounds like to me you are just trying to get the facts and that is smart! You can figure out what you think is right for you after finding out all you can. It for sure is a lot to take in and learn. When she gets a cold a nose sucker will become a really handy tool though hard to make them sit still for, but you are right in that the more you can clear out the better for them. I wish I would have learned that early on. Now that she is old enough, sinus rinses are my best defense. I wish I could think of more but my brain seems to be mush at the moment. If I think of more I will post. Good luck and hopefully more will add to this for you

 

[NoelA]

I agree with all of the previous statements. The main pieces of advice that I can give are: #1 PAY ATTENTION. You'll start learning how to tell when things are "off" with your daughter. Be quick when they are. #2 Write down questions that come to you during each day and take them to appts. Her doctors, nurses, pharmacists etc. are there to answer questions and help you, but there's no way they can give you all of the info that is out there. Just no way, there's too much. #3 Don't cut her life off. There is a balance that we all must find, as each of us are different. Finding a balance for your daughter and your family is probably the hardest thing. Figuring out what is safe, while letting her enjoy life is kind of tough. Use common sense. Ask questions here and weigh the answers that you get in with your own particular situation. #4 No matter how much treatments are a pain, don't let up on them. Be aggressive with CF. Treatments HELP, but do not cure. In the medical field, the "ABCs" are used as a means to keep order of importance in what is done to maintain health. Airway, breathing, circulation. The treatments that your daughter does are mainly to help clear her airway so that she can receive 02 more efficiently. Bacteria and viruses cause inflammation. Less mucus, less bacteria/virus proliferation, less inflammation, better airways, more lung function. Some viruses and bacteria are worse than others, but please don't put a lot of emphasis in what you read on the internet. Medical journals, statistics, etc are out of date (especially concerning CF) a lot and they usually publish worst-case-scenarios for medical reference.
You can do this and answers will come. Slowly, but surely .

 

[deb6470]

My son is going to be 36 and he is doing well but the one thing the doctors told us to quit using was our wood burner in the winter as it put mold into the air and he would inhale it. He would go to the hospital 5 to 6 times a year when we stopped using the wood burner it was once a year. Since he is older now he goes in about twice a year.

 

[dancer78]

Some really good posts here..., and I totally agree. Medical journals, etc are out of date concerning CF. (they have been my entire life) and it does depend on the person and how they respond.

Your CF team will help you but use your own common sense. Meds do not cure....and again, cf is VERY individual, something they are just now starting to acknowledge, and so it will be with your daughter as well.

One thing I will add about the mucus buildup in the lungs... water intake is very important, as I posted on another thread. When you see the term "dehydrated mucus" take note. It's made a HUGE difference in me, and got my pfts up 16 points when I had to get super serious. (That and daily carrot juice.) Take a look at http://watercure.com Really opened my eyes...that's what this mutated gene does is keep water and salt from passing through the cells, which CAUSES the heavy mucus buildup.

Know that this is not standard treatment, but if I'd waited on the medical community to catch up before I tried things, I wouldn't be here probably. Last hospital stay for me was 2008.
There are other pieces to the puzzle (like diligent exercise.) You are a thinking person Jessica, I can tell, so you're off to a really good start! Keeping asking questions; the answers will come. Hope this helps!