New to the Forum daughter with CF

[pootersmom14]

Hi! I have a 14 year old daughter who just was recently diagnosed with CF...well CRMS a few months ago and now after a hospitalization 3 weeks ago with a mucus plug and partially collapsed lung they have changed the diagnosis to CF. Her genome is M470V and r75q with a 7t/5t variance. She has a borderline sweat test. We are told this is a mild CF. Her lung functions is 75% and she is pancreatic insufficient. This is the first time I have done a forum. I woke up this morning angry, scared, and feeling very alone. My mom suggested I should join a group, so here I am. I am confused by all this genome stuff and just need some support and someone to talk to that can have empathy instead of sympathy. Someone who can say I know how you feel and really mean it.

 

[welshwitch]

CF can be a completely scary, helpless, journey. It can also make you laugh and feel more alive. I've felt all of those emotions and more. I've been on it for 33 years. But I'm the one with it. I'm going to turn 34 next month -- how did I get here?

Hard work, discipline, denial, tears, acceptance. It's a journey with many steps, many phases. I've learned a lot.

CF is a disease that has changed so much over the years and given so much hope. It's no longer a death sentence. I am looking forward to marriage, kids, dogs, grandkids, everything! I went out of state for college (I'm from CA), have a Master's degree, worked at a tech startup and taught high school. I lived in Costa Rica for 6 months, I've ran two half marathons and am training for a third, and run my own business while working full-time.

I'd have to say that having CF functions as a motivator of sorts. It's made me work harder, work smarter, love deeper, and squeeze every drop out of life. When you have CF, you always kind of feel like you can't waste your time doing something that isn't 1000% great. No time to waste on people and things that aren't meaningful.

Good luck with your daughter. And please know that this is 100% empathy, not sympathy. I don't believe in the sympathy thing, either. Just I know how you feel.

 

[Dhobs]

I really want to give welshwitch a giant hug right now. That post brought tears to my eyes AND made me smile

As for me, I have a 6 year old daughter diagnosed at 2 days old due to meconium ileus and then confirmed with genetic testing that she is ddF508. She had five hours of surgery to repair the problems it caused when she was two days old. She is my first and only and it was one of the scariest times of my life.

She had a mucous plug caused by an aspergillus infection last year which resulted in two hospital stays at about two weeks each. It caused one of her lungs to partially collapse as well. It was a rough time, but we got through it. They removed as much of the plug as they could, then after one particularly bad night, things opened up and her lung function has never been better - so hang in there!

 

[sdeuber]

Mom's are most often right Your mom by encouraging you to join this Forum. You as a mom to your daughter will make the right choices - trust me you will even you feel lost right now. I had my first encounters with the symptoms of CF when I was 14 BUT my mom was not as pro-active as you are. I was not diagnosed till I was 36. I also have a mild form and I do have my struggles. But I have a wonderful life, a wonderful spouse and two wonderful (adopted) children.
My advice: educate yourself, learn the medical stuff, read, discuss any questions with the doc until YOU understand his/her answer. Post on this Forum. Knowledge is POWER!!!
Last not least: your daughter should exercise. She can do anything even with CF. It has two effects: exercise helps in stressful situations and it will keep the rest of her body healthy to support the not-so-healthy parts. Swimming is a good one. Here is link to active CF patients: www.livingxtreme.org

 

[ssmommy]

Good morning . . . you are certainly not alone. I've not posted much -- yet your story truly touched my heart. Our daughter was diagnosed at birth -- she is four now. She had two surgeries at birth for meconium illeus and needed an inch of her colon removed . . . NICU for three months. I'm not sure of your beliefs, but what I have trusted since our daughter's diagnosis (we'd never heard of CF before!), is that God doesn't give us anything in our lives that we can not handle. Your strength will come -- amazingly. Rather than fear, your will find gratitude in each day -- my way is at the end of the day, have I done everything that I could do today to benefit our daughter. Science is unfolding as I write . . .find trust in your daughter's doctors and specialists -- there is so much hope for those with CF -- as mentioned above in other posts. You and your daughter are in my prayers today. . . .best wishes to her, you and your family.

 

[Shani]

Hi there I have a 17 year old daughter with Cf who was diagnosed at 9 1/2 weeks through sweat test. The diagnosis, at any age, is so bloody hard! I do empathise with you and your situation. I am here to tell you though, my daughter is going really well. Yes we have our ups and downs and hospitalisations, sick times etc, but my advise to you is DO NOT LET IT TAKE OVER. I regret that it took over the joy of me having a new baby once she was diagnosed. I wish I had focussed more on the child than the illness. We do not call it a disease in our home and I have never hung a "sick" sign over my daughters head so to speak. She is having all the normal teenage issues, doing all the normal teenage stuff and asserting her independence whenever she can. Yes, we have to deal with CF on top of all that, but they are normal kids in every other sense of the word. Yes, it is tough and sometimes life just plain old sucks, but you will cope with all of it. If you ever want a chat or facebook catch up by all means let me know via the forum. I wish you every happiness, the best of health and good luck for your future. warm regards from a kindrid spirit x

 

[Julie7]

My son has 2 copies of m470v and 5t 12TG/7T 11TG. He is almost 10 but not dx. First dx at 9 with pancreatic insuff...suffered acute pancreatitis and partial bowel obstruction and numerous sinus, lung infections. This isca great forum. I'm sorry for your struggle but know there are great people here for support. Where do you live?

 

[nmw0615]

I'm not a mom of a CFer, so I don't have that perspective. However, as a CFer, I must echo what others have said.

Your daughter has CF. CF does not have your daughter.

Let her live just as you would a child without CF. Putting her in a bubble, in my opinion, may reduce the number of times she's sick, but it also reduces the number of those special, amazing moments that last for life. The best thing my parents ever did was treat me like any other child. The only concession to the disease they ever made for me was I got an extra chocolate pudding for dessert because I needed the calories.

 

[scrapper1264]

My son was diagnosed at age 5, and it was definitely fearful and overwhelming. But it was also a relief as well because after that he started receiving the correct treatments. He was misdiagnosed with asthma so he was obviously not taking all the right stuff. It was a blessing to finally figure out why he coughed every day. We heard a 34 year old Cf'er speak the other week, and she said one of the most profound things her doctor told her was to not look in the rearview mirror, but look through the windshield. You now have the proper diagnosis so your daughter can now be treated correctly.

 

[Larasmom]

Sorry to hear about your daughters diagnosis. Hearing your child has CF is never a good thing. My 12 year old daughter has the exact same mutations as yours with one more thrown in the mix, 621+1G>T. She was diagnosed at age 5 and is doing pretty good for the most part. She just finished 2 weeks of IV antibiotics for 3 types of bacteria that came back in her sputum culture. If you ever need to talk, or have any questions. I am here.

Marie

 

[pootersmom14]

Okay I just read all of your post and all I can say is that I am so thankful I signed up and posted on here. Been super busy with her new treatment plan and I forgot to come back and check, but WOW!!! Thank you all so much!! You all brought tears to my eyes, I am not alone!!! Things are going very well. We went back to the CF clinic on Thursday and her lung function was 91% and she weighed 110lbs. Its like the magic fairy came and waved her wand. The month has been good for my emotions as well. I guess I just needed to get on my feet after being knocked down, and now I am ready to raise a beautiful daughter who I will empower and who has great strengths to fight this disease every day.

 

[pootersmom14]

Trying to answer everyone's questions. We are from Texas.