Cystic Fibrosis - Updates, new info, encouragement?

[Swheeler05]

Hi, I'm Samantha and my 5 week old daughter was diagnosed with CF a week ago.  We've already been to Children's Hospital and gotten lots of good info and hope from them, but I want to hear from any parents with CF kids.  I've read some of the older posts in the archives about it but there isn't much new stuff on here about it.  I'm worried about balancing all of the medical treatment with alternative, natural treatments.  I'm also curious as to how it's affected your lives and how your children are doing with it.  Daily life type stuff.  Any info would be awesome, thanks!!

[treehugger86]

Did you get my PM? I seem to be having difficulties sending a message (and I'm feeling a bit hesitant about sharing personal information in this format).

[Swheeler05]

Sorry it took me so long to reply!  I didn't recieve a PM from you, but I'm interested in any info you may have for me!  Try again? :)

[treehugger86]

I have been reading MDC for many months, but I finally decided to join, because I wanted to send you a message. I am not a parent of a child with Cystic Fibrosis, and I don't know whether I can answer your questions, but I wanted to share my experience with you.

My fiance has CF. He is 27 years old. He recently had a double-lung transplant. We are able to dream and plan for a future together. It has been a very long and difficult journey, and CF is a large part of his life - but, it is only part of his life, it does not define him, and it does not prevent him from living in this world, and making the most out of each and every moment. Attitude is (and has been) everything.

His advice? "Hang in there" and "Try everything". His family has fought very hard to keep him alive. We have regular clinic appointments. We do a lot of research. We ask a lot of questions. He also follows a strict routine of medications and exercise. The double-lung transplant has changed his life in many ways. Of course, it is not a cure, and in some sense, it is an exchange of one set of problems for another, but it has significantly improved his quality of life, and will hopefully extend his life for many (many) years.

It is difficult to articulate the impact of CF on his life. It certainly has changed over time. He speaks of having a relatively "normal" childhood. He has always been followed by a CF clinic. He has had several hospitalizations for lung infections throughout his life. He has a port in his chest. He also had a PEG tube for a few years. (Weight gain continues to be difficult). Medications have always been part of his daily routine. PT was also important as a child.

I wish you the very best. I'm also happy to try to answer to answer some more of your questions.

There is a lot of hope for individuals with CF to live long, fulfilling lives.

Edited by treehugger86 - 7/25/11 at 1:57pm

[treehugger86]

Hi again,

I found some blogs for you of parents with young(ish) children with CF. I know it is a long list, but there are a lot of blogs out there . . . ! Many of these blogs also have links to other blogs in the CF community. I selected these because they had been recently updated, but I cannot speak to the content (or regularity of updates).

http://www.gofightingfish.com/our-journey-blog.html
http://mommyformadeline.blogspot.com/
http://worthhissalt.blogspot.com/
http://radeklovestobreathe.blogspot.com/
http://thebreathingroomcf.blogspot.com/
http://lungsbehavingbadly.blogspot.com/
http://teamskyesthelimit.blogspot.com/

I know it is easy to be overwhelmed (and scared) by all the information. Try to remember that the impact of CF is often very different for each individual child . . . ! Stay positive!