Cystic Fibrosis

Hi J.! First of all my heart goes out to your cousin. I have a cousin who had cystic fibrosis and he lead a wonderful life! Hard, yes, but he still had a very full life for someone with this illness. He constantly amazed the Dr's, he lived to be 35 which is about 30 years longer than they originally gave him. I am sorry I dont have any technical information to give you, I just know that my cousin was a very happy man despite the hard times. He lived a great life!

It is sad. I had a sister that died at the age of 10 in 1959.
I had a cousin that lived to be 14, till 1970. His 2 other brothers have it and they are both in their 40's today. The oldest of the 2 has had a heart/lung transplant. They say it is better to use matching organs for a successful outcome. He has gained so much weight, looks like a healthy man and does anything any other man can do now. The advances that they have now are so much better and will only get better. They other one who has had no transplants still has to spend time in the hospital on and off, but he is married also, with two adopted children and a grandchild. I don't know what it will be like for a newborn. Her lungs are so tiny, but there are success stories like ours. Keep praying for her.

Hi J.,

My heart goes out to your cousin, her husband, and your family at this time. She is probably overwhelmed and in the process of searching for any information possible, while dealing with a change of mindset in what she hoped for her child and how she thinks this condition will impact those hopes. I have been working peripherally in the CF field for a few years and helped to develop a positive website for families living with CF. It's definitely not your "generic" site.

It has a section for parents of children with CF, and their stories,and videos about what they went though after diagnosis, and how they are planning for the future, a section for 6-8 year olds with cartoons about CF and games to play during treatment time, 9-12 section with interactive science games about CF and games for treatment time, and videos of 9-12 year olds sharing their feelings on living with CF and what they hope for the future, a section for teens with podcasts, and videos on their lives with CF, and a section for adults with CF with articles, podcasts, and videos. This site is a great place for parents of newly diagnosed.

I know several moms of children with CF, although I would have to figure out an anonymous way to get information to you if they wish to connect with your cousin.

First off I would suggest a few things to help her out on her search for information.

Check out the site I mentioned about CF:

www.CFvoice.com

Other great source:

www.cff.org

(The Stenzel's book is amazing it would be a great resource for your cousin)

Then I would call a local CF chapter, or the hospital they will be using for care and see about any "Family Days." They provide a great source of informaiton.

Also every spring there is a CF bike-a-thon in Lynden, and families, and anyone touched by CF attends. Another great way to meet people with similar experiences.

It is beneficial your cousin received the diagnosis for her baby so young. It will give her a huge advantage in developing a long term care plan for her baby. As for what life will be like for her child, it is tough to say. Different for every child. It is important to stay vigilant about care and medicines, and vitamins and enzymes, healthy fats, and exercise. They all go hand in hand in treating this condition, even when her child seems well.

People are living well into their adult lives with CF with proper care. Although I don't want to paint the picture that this is by any means an easy condition, it requires lots of pills, and clinic visits, and there will be many ups and downs. What used to be primarily a pediatric disease, we now see almost 1/2 the patients in the adult population. This is great news! Medications and treatments have come a long way. I have worked with young children and teens with CF filming their story on life with CF, and dreaming beyond CF and I can tell you that they have been living full lives! I hope this provides hope in a time of worry, and maybe disbelief.

My best to your family,

K.

Here's the best I can offer you...emedicine is one of my favorite sites for tracking down details...as long as you know the lingo, as I'm sure you do.

http://www.emedicine.com/ped/TOPIC535.HTM

You should be able to follow the link without having to register, but usually when going through the articles you DO need to register. Fortunately, it's free. If for some reason you can't link up, toss me a message and I'll email it to you.

Best of Luck,
Z.

I know an incredible pair of twins who have grown up with CF and written a book about it, THE POWER OF TWO by Anabel and Isabel Stenzel. They also have a website, www.stenzeltwins.com, and from the site you can find the book, their blog, resources, and how to contact the twins.

Thank you being such a caring cousin.

I'm sorry to hear about your cousin's baby. My cousin has CF and my Aunt and Uncle have worked really hard with the CF foundation raising money and awareness for the disease. I would say the CF foundation would be a good resource they usually list groups, doctors, medical breakthroughs and other really good information.
My cousin is now 23 he had a lung transplant about 5 years ago and is doing great. It is hard to know what is the outcome is going to be. There are MANY strains (or variations)of CF and each one can manifest itself differently. Some have a severe case and die young unfortunately others have a mild case and they do well. My cousin had one the most common strains. He was sick a lot as a child and had many of the new breathing treaments. Anytime he had a cold they put him on antibiotics. He was in the hospital often. Before the lung transplant he was on oxygen and barely could walk across a room without tiring out. He is lucky to be as old as he is with his type of CF. I hope that this young baby has a mild strain of CF and can live a long life. Some go well into their 40's! My heart goes out to you and your family.

Hi J., I have recently been learning about cf because I have been getting information to another mom here in our area about using the patented pharmaceutical grade nutrition we are distributors for. I connected this mom with a lady Holly who is at least in her 30's and is doing really well. She shared her experience growing up with it and what helped. This nutrition has made a huge difference for her and she also shared other things that did as well. She has spoken at cf conferences too. I could probably help get your cousin connected to her via phone if you would like. I could also ask the person I know in town with a teenage boy that has it if they would be willing to connect. Let me know. M.

I have seen where adults have it CF,, and I saw whwere the Dr. beets on their back up and down for it seemed hours,, doing it on both sides of the lungs and I saw so much fluid come out by doing that,, my goodness,,, ask your Dr about that,, I know she is a tiny little girl 7 months,, oh gee,, how lovely,,,, but ask,, D.

I read a book called "Alex:The life of a child" and it was tremendously informational about the difficult life of those diagnosed with cystic fibrosis and those who love them. There was also a movie made from this book (in 1987, I think.) Of course, it is sad in many places, since cystic fibrosis is a terminal condition, but there were many sweet, joyful snapshots of Alex's little life. It was written by her father. I hope this helps. God bless you all!

I am sorry to hear about your cousin's little girl.
My children don't have cystic fibrosis. One of them had a Congenital Diaphragmatic Hernia. I was lucky I found a website. Some parents form support groups through or at Hospitals. If your cousin is taking her baby to a specialist (I would H. that she is) that maybe the doctor or a member of thier team would know. Children's Hospitals are also a good source to find something like that.

Good Luck. Your cousin is lucky to have you to help her explain some of the medical terminology on things.