Positive Stories Please

[anonymous]

hello,

I am pregnant with my first child, and there is a really good chance the baby will have CF. (delta f508 and some rare gene.) We've had problems with testing so my OB is going to send some cord blood off to be tested when the baby is born. I feel like I hear so much negativity about this disease, and I was hoping for some positive stories since we do not know anyone with this disease and it is so new to us. Is the child's life very difficult and different from other kids? Does it limit them from things like sports, sleepovers, and school field trips? I know I may sound completely ignorant, but every website I go to is so different in the way they describe this disease and it is really stressing me out during this pregnancy. I would love to hear some positive stories if they are out there. Thanks so much for your time!

 

[Purplelungs]

It really depends on how mild or severe the cf is. But they can still be happy children, just with extra things like meds and treatments and some hardships. I wont lie it is a harder life. For me yes i have a harder life, but i take it as its just my normal thing i have to do. I am still happy, I am happily married for 3 years, I am a stay at home wife, I love going out with friends. I am just as normal as any other 22 year old, i just cough more, laughing makes me cough, i have to slow down, take meds make time for treatments. When I was younger nothin ever interfered with my life, except those trips to the hospital or not feeling well...that puts kinks into things. I still went to sleepovers, i just took treatments with me, I still went on field trips, i did PE for as long as i could and did everything all the other kids did even though i was slow. Many cfers are into sports, I have a friend that was really good at rugby. I have another friend that has a very low lung function and he is a body builder, he is huge and engaged. There is no reason why your child cant do things, sure they maybe a little limited, have to go about things slower, or make time for meds and treatments but they can still do things like everyone else, its just different how they go about doing it.
Try not to think about the negatives right now. As far as you know your baby will be a basketball star in highschool, or in the band...into all the little leagues ...maybe they wont even be into sports but into something else. Just be like all new moms and enjoy the bundle when he/she gets here and as they grow up treat them as if they didnt have an illness. Yes cf is very hard to deal with sometimes but i still say for myself im just like everyone else i just have more hurdles and try harder to keep myself healthy. My husband always tells me this "there is no sense in worrying until there is something to worry about"

 

[NoDayButToday]

Here's a modified post of mine from a few months ago:

As a youngster, I was basically limitless in my activities-- as long my mother and I made time for my treatments, I was allowed to spend my day like any other 3 year old chooses to. As I've gotten older, some of my activities have been limited (running poses a problem now, so I no longer play sports for my high school; I manage instead and have just as much fun). Just to clarify that parenthetical thing, I can still play sports for fun (my friends and I sometimes organize softball on a lazy Sunday in the summer) but I no longer play competitively because my stopping to catch my breath wouldn't gel with a high school team.
I lead a pretty typical teenage life, just modified a bit to fit in treatments (aerosols, CPT, pills, tube feeding). I manage sports, am on debate, in band, and in the Celtic Club. I sleepover my friends often, just have to remember to bring my treatments and 'machine'. I can stay over a friends house or stay in town at our diner (I live in a pretty dull town) as late as I want; or rather, as late as my mom would prefer me to, so long as I can stay up once I get home to do my treatments and do them right. I can definitely sing-- my friends actually say that I'm the best singer in our group of friends; personally I think my CF congestion gives me a more rich tone or something like that. I am able to dance-- maybe not very well, but I can certainly have fun doing so. I'm known to run around on my friend's lawn in the summer during storms in our bikinis, dancing like lunatics. I just tonight went to a rollerskating sweet sixteen, and skated around (falling on my butt more times than I'd like, however). I babysit often. Being in the sun poses no problem for me, except for my pale Irish skin burning without sufficient sunscreen. Dust or pollen affects CFers no more than the average person UNLESS they have allergies along with CF.
That's more day to day stuff. In my life, I've traveled, I swim at the beach, I swim at the pool, I've gone to sleepaway camp, I've gone whitewater rafting, kayaking, on a zipline off a cliff. I've explored (and continue to do so) the greatest city in the world (NYC), I've been in a movie, I've pulled all nighters with my friends just talking, I take baths every night, I love to eat, I've won awards, I've been in Accelerated level classes since they've been an option, I've been a bridesmaid and a flowergirl. I've played flute and piano for years, I am a master at the card game Spit, I gave speeches at graduation.
I play Scattergories with my friends VERY often, I sit in my pajamas sometimes til 4pm watching movies with my girls, I am addicted to decorating shows, I read tons of books, I like a good tabloid sometimes. I play stupid games with my best friends to pass the time in the car to the beach, I love nothing more than a dispenser filled with Pez, I STILL like to color, I'd be lost without my mom and my music. When I'm in there, the hospital is just another stop on my journey. I have many more plans for my life.
I was actually just going through my photos piled in my room, and have to say in each of them, from babyhood to a few weeks ago, I look very happy. My mom looks happy, my friends look happy, we are all happy. CF is a very sorrowful thing for me sometimes (as it is for my mom and everyone who is a part of my life), I wish every single day that it would be over and done with, but despite CF, I would never wish that I wasn't born. My life is too great for that (even with CF as part of the deal).

 

[anonymous]

I am the spouse of a man with CF and life is wonderful for us. He was born in 1980 and diagnosed in 1982 because after his mom stopped breast feeding him, he lost a lot of weight, he wouldn't eat, he was always having upset stomachs, his stools were very "strange" and he became a very colicy baby. He was diagnosed via sweat test because of "failure to thrive". Once he was diagnosed, they got him on some enzymes and his digestive problems stated to clear up, and he had some lung problems as well-but before the CF diagnosis they had no idea what was going on so they just gave him over the counter medication and common cold stuff.

He did very well in school, missing some time here and there but his older brother always brought the homework home. Nowdays there are programs in place (504 plan) where the school district has to provide an at home tutor if a student misses more that x days of classes (X-dependent on the student plan). He had a few hospital visits at a younger age-most before about 7 or 8, and then a few in JR high and HS but those were to participate in studies. He did a lot of extracirricular activities, from about the time he was 7 until graduation he played year round soccer. He also played outside with his friends like all kids do- basketball, baseball, bike riding, playing around the neighborhood... He is now a full time student in college and will be graduating with a degree in Business Administration and is considering pursuing his major in international business. Things are a little tough financially right now, but only because we are living off of one income while he is going to school. But that is not something individual to his CF. There are many couples out there doing what we do. I feel it is most important for him to concentrate on his school work and health, and not worry about working and finances. He's one of those people who when he works and he's bringing in the income, he focuses solely on money. So we made a decision to have him not work while he was in college. My husband already has a potential job lined up for him next year, if we get back up to washington.

He used nebulized TOBI (antibiotic) for the first time two years ago because there wasn't really a need for it before then, and recently got a vest (www.thevest.com) for his chest PT. The vest only takes about 20 minutes, whereas the manual chest PT was taking about an hour, plus the manual required both of us and my schedule at work wasn't allowing that to occur all the time. Other than that, he usus Azithromycin once M, W, F and the TOBI only when he has infections, which is about every 8 months or so. Since he was an infant (about 3), he hasn't been in the hospital for lung problems. He has NEVER had IV antibiotics-this is pretty rare for a CFer but he's not alone in that fact. We are getting ready to start a family, and have plans to pursue with our plans next year as I am hoping to get stationed in Washington before we proceed any further.

Other than doing his Tobi nebulizer when he is sick and his vest every AM, he leads what I consider a normal life. As purple stated, everybody's CF is a bit different, and My husband Mark has had obstacles due to the CF, but he still functions in society.

I am sure you have lots of questions for parents with little ones at this time, but if you ever have questions about "growing older" with CF, you can email me at division902@ghotmail.com. My husband checks that email too so he will write back to you.

Take care,

Julie (wife to Mark 24 w/CF)

 

[HollyCatheryn]

Coll said it very well. I will add my experience. I had a rough start at things, but being breastfed was one of the healthiest choices my mom made for me. Definitely breastfeed! After my diagnosis and getting started on therapies, things started looking up. I didn't go in the hospital again until I was almost 7. I was in gifted and talented classes and loved school. I was in gymnastics and the swim team. I slept over. I rode my bike all around town during the summer. I went on school trips and to camps. I played in the orchestra and sang in the choir. I graduated early. I went away to college. I had my own apartment and worked. I got married (5 1/2 years ago<img src="i/expressions/face-icon-small-smile.gif" border="0">) and had a daughter (3 years ago). I teach violin, viola and voice. Some years have been harder than others. Sometimes there are several hard years in a row, but contrary to what most of the publicity and even research says, my health has been steadily improving over the last 4 years. Other than strongly encouraging you to breastfeed (it is healthier for a baby with CF and much less stressful on the Mom - I've done both breastfeeding and bottles) I encourage you to look not only at what conventional Western medicine has to offer, but what other alternative practices can do. Conventional doctors are very good at dealing with infections and acute things, but tend to be less knowledgeable about maintaining health in the absence of something obvious. Other practitioners are better at achieving and maintaining wellness. Feel free to email me if you have other question. My mom wrote a great booklet about CF for families with new diagnoses. It runs down the basics and is really good for teaching a young child about what CF is, when the time comes. If you'd like a copy, just email me. The goal when I was diagnosed (25 years ago) was just to keep us all alive. The expectation now is that most of us will live to be healthy adults. Of people with CF, the population 18 years+ is the fastest growing. Though CF is unique to each person diagnosed, the prognosis is very good that your child will have not only a wonderful life, but a fairly long one. A guy just posted to the adult side who is 56! The oldest person with CF in the US lived to be 79 (she married and had one biological child and adopted another)! I know another lady who is 61. Some are doctors, some are lawyers, writers, house-wives, parents, athletes. I knew a guy with CF who went to the olympic-trials as a pole-vaulter. Look up <A class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/CF.htm" target=blank>www3.nbnet.nb.ca/normap/CF.htm</A> there are a lot of good (current) resources there. Norma (who runs the site) has CF, she's 43 and has a 21 year old daughter. She has a remarkable persons page (<A class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/remarkablecfpeople.htm" target=blank>www3.nbnet.nb.ca/normap/remarkablecfpeople.htm</A>) that is great for seeing some of the wonderful things that people with CF have done and are doing! My site has some neat stories of adults with CF becoming parents. I know CF sounds scary and sometimes it is, but hang in there. There is a whole lot of great life to be lived yet, with or without CF! 

 

[Emily65Roses]

I want to add my most recent experience that can help with this... (plus it gives me a chance to talk about my trip last week heheheee).

Last week I went to Orlando with my boyfriend Mike and his family. We spent 4 days at Disney World and 2 days at Universal. It was awesome! CF limited me, of course, but I was born way back in 84, and I'm 21, so I've had plenty of time to gather some damage. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Either way, I had a kick tooshie time. Walking is not a problem for me, as long as it isn't very long distances. But given that we were in Disney and Universal, we knew it'd be a problem. Plus, although I can walk, I am generally slower. So we rented a wheelchair for the week. Mike pushed me all week long. I was originally against it, because of what it meant for me, what it represented. But in the end, it was a great decision (Mike and his family made it for me, I wasn't given a choice... haha). They weren't slowed down by me, and we got good parking (my handicapped sticker went with us), and special treatment. We got up-front seating for all the parades and shows, and we even got to skip some lines because of it. So yes, I was in a wheelchair, but I had SUCH a good time. And I didn't skip out on anything because of it. When we got to a ride or whatever, I'd just get up out of the chair, and sit down on the ride. At the water parks, we left the wheelchair, and I got a little more tired (stairs to all the slides), but I was still able to do everything. Mike and I just walked up the stairs at my pace.

In the end, regardless of whatever held me back, or slowed me down, I had the BEST time ever. I met some of my favorite characters and got pictures with them (the GRINCH!!!!), I went on some awesome rides, I saw some lovely culture, I had a blast with Mike's family, I went on water slides an in wave pools, I saw some 3D shows (Muppet Vision!!), I took more than 3 cameras of pictures, and I spent "a little bit of" money. <img src="i/expressions/face-icon-small-happy.gif" border="0">

Also, keep in mind for your own child (I always say this to newer parents <img src="i/expressions/face-icon-small-smile.gif" border="0"> ), they are being born in 05/06ish. The nebulizer med that keeps me going wasn't even on the market until I was 9 or 10. They hadn't specified which gene caused CF until I was 5. You will know right away if they have it, and if so, you can start the meds right away. I know it sounds like a bummer, but starting the meds ASAP will only help your child. I went 9-10 years without my Pulmozyme, and I'm sure if I had had it the whole time, it would've made a difference. Now me personally, I'm not against seeing other CFers despite the risk of cross-contamination (CFers have a high rate of spreading lung bacteria to one another). But if you are (and each family has to make this decision for themselves), this is a better time for you. When I was a kid, they didn't even know of that risk. I went to CF Christmas parties, and bowling, and hung out with other CF kids often. Now they know better, and if you're against taking that risk, you can purposely avoid it. (Mind you, as I said, I'm personally for visiting with other CFers, the positive outweighs the negative in my opinion... to have someone who understands firsthand what it's like to be a CFer makes a huge difference, for the better).

Either way, transplants are a lot better than they were, the science is coming along, and your kid has the HUGE advantage of being born X number of years later than any of us CF adults here (21+ years if compared to me). And if you want correct information, this is the place for it. A lot of websites are outdated, or just flat-out wrong. As CFers, or close to people who are, most of us know what we're talking about, and will be able to give you correct and *hopefully helpful* information.

 

[EmilysMom]

You are always to going to hear the bad stories but there are just as many good stories to go along with those. WHen Emily was little we were asked to leave a movie theatre because her "coughing was disruptive to the other theatre patrons". That is one of many things that happened when she was little. As she got older and developed a wonderful circle of friends, many better things happened for her. When she was in 7th or 8th grade (I can't remember) and was doing that stupid President's Physical Fitness test where they have to run the mile, Ssh was having trouble with it. After her friends finished, they got permission from the gym teacher to go back so they could come back around and walk with her to encourage her to finish it. THey have all promised her a lung when she needs it. An emotional promise saying "we're here for you".
Your child will find just the right group of friends who will encourage and love them for who they are despite the CF!
Hang in there!

 

[anonymous]

I have two children and they both have cf. E-mail me at sdelorenzo@sbcglobal.net and I will send you a few pictures of them. Hopefully, you will be able to see what a wonderful life they despite their diagnosis.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf

 

[anonymous]

My twin 10 year old boys went on their first sleep over 2 weeks ago and had a blast. I just made sure that they had their last physio treatment and meds before they left, they took their morning meds with them and came home in time for their morning treatments. I worried all night for nothing, lol. As for sports my two guys are major sports fans. The twins have a lot of lung damage and pfts are very low but it doesnt stop them. They love to play soccer, basketball street hockey etc. They do have to sit and rest sometimes,for example, if the kids are running around the school twice for gym, my two little guys will only run around once. They know when they need a break. Sometimes they find it difficult to keep up with their friends but they never give up.

 

[anonymous]

Amen to all of the wonderful stories - and ditto to Emily, Coll, Julie and Holly Catherine (great idea to breastfeed!!!). My son was diagnosed 4 years ago and he is doing WONDERFUL. We work hard to keep him healthy, but his daily regimen has just become routine to us...we don't know any other way. You'd never know by looking at him that he had cf - - he acts like any other 5 year old (ok, maybe more of a spitfire...). He loves Star Wars, his bike, gameboy, visiting family, and fighting with his older brother. Doctors have come a really long way with cf. If your child were born with it, now is the time - - they are doing SO MUCH! We have a very positive outlook for our son's future. Feel free to email me with any questions. Good luck.

Carey
bono40@aol.com

 

[anonymous]

Hi everyone. I'm the original poster (realized now I forgot my name!) I cannot thank all of you enough for sharing your stories. I am going to look back on this whenever I need a pick me up. Actually hearing such wonderful stories gives me more hope than you can imagine. I think since the only person I've had to talk about this with is my regular OB and no one that sees this firsthand, so I am hearing just the bad. I believe the rough times are rough, but overall the quality of life really doesn't seem all that bleak. If anything you guys have made me realize CF just seems to become a part of who the child is, and just a part of their everyday routine. Thank you so so much for these stories. I am just in the happiest mood now! Thanks, Ava

 

[buggygurl321]

It depends on the kid. See, I know one girl who is kind of short (CF stunted her growth) and has had to go into the hospital like every month. Me, on the hand, I was so healthy-looking that I wasn't diagnosed until I was nine (I popped a hernia from coughing, and my parents investigated). I'm actually pretty tall (well, taller than my mom and grandmother at 5'5") and am a very healthy weight (~145 lbs). It really doesn't limit me too much in sports; for years I played soccer without taking any breaks, and now I am a brown belt in kenpo karate. I'm not the best runner, but I'm great in karate. About sleepovers and fieldtrips: I've been to sleepovers (I just stay behind when the other girls run off somewhere to quickly swallow my pills, and do my inhalors when I get home). Very recently, on Friday, in fact, I went on a fieldtrip to Boston (Ducktours!!!). To swallow my pills , I just went over to the teacher after lunch. Simple. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Don't stress out too much, but keep learning about CF so that you're prepared.

Good Luck and Best Wishes,

Katie, 14 w/cf <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[rose4cale]

My son is 2 1/2 and is the happiest boy. He is such a joy and has really made me a better mother. We found out about his CF one year ago. He has brought our family together, even closer than before and brought so many smiles and laughs to me. I was caught up in the rat race before he was born. When I first laid my eyes on him, I knew he was brought to me for a reason. I really pick my battles now and am so much more patient about the little things. <img src="i/expressions/present.gif" border="0">

He is a typical 2 yr old boy. He played in the pool this morning. Runs, climbs, screams, <img src="i/expressions/face-icon-small-wink.gif" border="0"> fusses, hugs, pulls his sister's hair and gives the sloppiest wet kisses! He has fun playing with other kids and can keep up, though he has the shortest little legs. He is just perfect in my eyes.

He really isn't on breathing treatments or anything major yet. We have been blessed by his 'good health'. We keep his life as normal as possible and count our blessings!

shellybutts11@hotmail.com

I wish you the best with your pregnancy and birth. CF or no CF, kids are amazing creatures.

 

[SeasonsOfLove]

Hi,

I too worried about lifestyle/social stuff like this when I learned my baby might have CF. And you and your child will encounter ignorant people (like the people who made Emily leave the movie theater, like a girl from Coll's elementary school group of friends who used to call her "cough-girl" behind her back, etc.). However, the nice thing about CF is that it tends to weed out fair-weather friends over the long-run; and you end up with fantastic, truly good people as your friends.

As for health causing a child to miss out on things, it does happen. Colleen has spent some birthdays and holidays in the hospital. But she also has weekends that are a whirlwind of social activity.

Best of luck,

 

[NoDayButToday]

Even in the hospital though, we still have a fun time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Emily65Roses]

Of course! Sneaking in food... Mike stays with me, and we have like a slumber party. We play games, and do puzzles, and watch endless movies. It's really actually a lot more fun than a hospital should be. Haha.

 

[roblake29]

Wow, there are some wonderful stories on this thread, and I have enjoyed reading each one (twice!). Like so many of you (either with CF or the parents), I feel incredibly lucky in all that I am and all that I have. Having CF has only made me realise how wonderful and precious life is. Because of this I have made so much more of an effort to do things with my life, and live with a sense of urgency. So many of my friends don't do this, and so I am lucky in this respect to have CF.
I know that I dont speak for everyone with CF when I say this, but generally, I am in excellent health. I have played sports all my life (this is very important), and continue to defy the statistics about CF. In April I ran the London Marathon! I play sports most days of the week and am a PhD student here in London.
You know, so many parents want their kids to lead a normal life. Well, whats the point of that? Better to live an extraordinary life, one that everyone else wishes they could live. Having CF has given me the eyes to see this clearer than anybody else I know (apart from other Cfers on this sight), so enjoy it and watch your kids live and grow to be the most appreciative and amazing people.

Have fun!

Rob 24 w cf

 

[rose4cale]

Well said, Rob!

I am still impressed with your marathon run. Keep it up!

 

[hoolagrrrl]

It really depends on the baby's genes like you said or if both the parents are a carrier if so theres a big chance the baby will have cf or be a carrier. if one parent has the gene its a 50/50 chance the baby will have cf but if not cf the baby will probably be a carrier which is not bad @ all hope this helps.
alyssa w/cf(Female)
I am 13 years old

 

[buggygurl321]

actually alyssa, you have it a little mixed up. See, BOTH parents have to have the gene in order to even have a tiny chance of passing it on to their kid. Also, if both parents have the gene but not CF, there's only a 25% chance of their kid getting it. If one parent has CF and the other is a carrier, there's a 50% chance of the kid having CF. But, if one of the parents is NOT a carrier, there is NO chance of the kid having CF.

Just wanted to help clear things up a bit.

<img src="i/expressions/face-icon-small-happy.gif" border="0"> Katie <img src="i/expressions/face-icon-small-happy.gif" border="0">