My dr says my daughters have mild CF, what exactly does that mean? They dont display a lot of symptoms which i am very grateful for. My 4 yr old has a cough in the AM every day but goes away by noon. She also had frequent colds and has more respitory symptoms than my other daughter who is 6. The 6 yr old has pancreatitis and belly pain but not respitory symptoms. I read all these posts about hospital stays etc and it makes me thankful i havent gotten to that point yet. I was just wondering if anyone else has CF mildly? Is it realistic to think they will never have these hospital stays, tune ups etc? I know it sounds like a dumb question but i dont want to have false hope. I hope i dont sound negative. I guess like all of us i just try to look into the future for some reassurance. Thanks!
Mild CF???
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I have a fairly "mild" case as well. I was not hospitalized until I was 12. Don't get too comfortable thinking that all will be fine forever. Stay on it, because it will sneek up on you if you don't. It sneeked (yes that is a word) up on me when I was 24 and kicked my butt. I take much better care of myself these days.
I guess in many ways, my son also has "mild CF" right now. His GI issues are kept in check through his enzymes and antacids. He also does the "vest" treatment twice a day which so far has kept his lungs fairley healhty. He goes to preschool three mornings a week and spends his afternoon running around with his friends and/or sisters. The optomistic part of me hopes that this will always be the case, but in reality I do not know what is in store for him or his health. That is the big mystery about CF. Even with the same genetic mutations, CF affects each person so differently. Some children are born with a lot of problems and really battle CF from day one, while others enjoy many years of good health. There are even others who do exceedingly well up into their teens and twenties without any major problems. Sometimes, it is this unknown is the thing that scares me the most about CF. However, other times, it is also the thing that gives me the most hope. We hope that by taking advantage of these "healthy years" we will help give Sean the greatest chance for a long, healthy and happy life. Therefore, we treat Sean's CF very seriously and very aggressively. He does his medicine and chest therapy treatments every day, spends lots of time running around outside exercising, and visits his doctor at least every three or four months for checkups. We also wash our hands all the time and are very careful about exposure to colds and germs. I feel fortunate that he is as healthy as he is right now and I am determinded to keep him that way.I know what you mean, as a parent, I also constantly crave "reassurance" about my son's future. I wish I had all the answers - if I did, then I could sleep a lot easier at night 
But to answer your questions, unfortunately, there is no real answer. I think the fact that your daughters are 4 and 6 and are still very healthy is a good sign. The only advice that I can give is what Sean's doctors repeatedly tell me -- and that is children who are active and involved with sports generally tend to stay out of the hospital more than children who aren't as active. (I hope I don't offend anyone with this statement, b/c I know there are some very active children out there who still have frequent hospitalizations.) I am just repeating their "general rule of thumb." In any case, exercise can't hurt. The stronger the heart and lungs are, the better able they will be to help kept those bodies healthy.I wish your daughters many, many years of health and happiness and I hope they never have to see the inside of a hospital.--Katrina, mother of Sean (5) w/cf, Carolyn (3.5) w/o cf, and Allison (1.5) w/o cf
But to answer your questions, unfortunately, there is no real answer. I think the fact that your daughters are 4 and 6 and are still very healthy is a good sign. The only advice that I can give is what Sean's doctors repeatedly tell me -- and that is children who are active and involved with sports generally tend to stay out of the hospital more than children who aren't as active. (I hope I don't offend anyone with this statement, b/c I know there are some very active children out there who still have frequent hospitalizations.) I am just repeating their "general rule of thumb." In any case, exercise can't hurt. The stronger the heart and lungs are, the better able they will be to help kept those bodies healthy.I wish your daughters many, many years of health and happiness and I hope they never have to see the inside of a hospital.--Katrina, mother of Sean (5) w/cf, Carolyn (3.5) w/o cf, and Allison (1.5) w/o cfI am never sure what mild CF is either, but my sister and I were told we have mild CF and I was glad to hear it.I was 14 when I had my first IV, and my sister was 40 when she had her first IV ( she had 4 children before that).It seems that once I had the IV that was a signal that CF was here to stay ( like where was it going?) and that it then meant I had to take even better care of myself - cupping, pill taking etc. It was not until I was in my mid 20;s that I needed to cut back at work and then get listed for a lung transplant. Lung transplant was 6 years ago. My sister also after her first IV meant that she had to be more diligent in her care and at 46 she had a lung transplant.CF varies from patient to patient and from time to time. I had periods of great health for no real apparent reason, and then down times and then up times again.Just be sure you are diligent in the care of your kids and instill in them the need and want to stay healthy.Good luckJoanne
I have a mild case of CF although I have the most common mutation. I was not diagnosed until age 14 and before that was a swimmer, runner, and just as active as any other kid my age. I think this exercise kept me so healthy. I got my first and only tune up at 17, but I am now 19 and have not had another one. Even though my docs told me I have mild CF I do not use it as an excuse to slack off on treatments. I make sure I do all my breathing treatments, exercise alot, get enough sleep, and take care of myself. If your girls have mild CF they will proabaly have long healthy lives ahead of them (despite my CF I would say I am a very healthy person...hardly get colds, have a lot of energy...) just make sure that they take care of themselves and have a good attitutde towards life now so that they can stay healthy and happy for as long as possible!Em
I classify myself as also, mild CF, I wasn't diagnosed until age 54. For me as the years progress, I see a slow deteriation in my health. Through the years I was always careful, but did snow ski & swim alot. I think that kept me healthier.... Don't stop doing things, just do things carefully!Mary55wcf
Thank you all for all your replies! Wow! Just diagnosed at 54.... how were you diagnosed? I would never slack on my girls treatments, they do everything they are supposed to do and even though they are healthy now i still am very strict about making sure they do their nebs etc every day. Even though sometimes they give me a hard time, theyd rather be outside with their friends etc!!!! Thanks!!! Jen R PS glad to hear so many of you are staying healthy