Posted 5/28/2008 11:56 AM (GMT -7)
Hi there, welcome too healing well.
I am Gemma age 22. I am not a parent, though do have CF myself. All I can say is, it does start too feel normal, and it does get easier.
Please, try not too blame yourself, you didn't purposely inject your children with the CF gene, you had no way of knowing that this was going too happen.
I was also faliure to thrive, speaking too my mum, she has told me how things were when I was born. For two year's I didn't grow/put on weight, had a thousand problems with prolapsed bowels and a lot of chest infections. She kept gettingsent away from doctors, saying things were all in her head. Eventually just after my 2nd birthday, they did a test for CF and prooved positive.
about a year after starting to get proper treatment, I started too get better.
All I can give is my view on how things have gone for me. I also have clinical depression and have suffered badely with it for years, much more thna cf has ever effected me. However, even though the CF can be rubbish, something must be good enough in my life, to stop me killing myself. Soem parts of my life are still normal enough, for me too function normally. even when things are at there worst.
CF brings with it fighter's spirit, it's built into chromosome 7, and is the twin of CFTR. I can't speak for myself, as I don't see myself as brave or anything I just think I'm a scardey cat in all honesty. But every single one of my CF friends have the spirit to go on fighting and get over things. Your sons will have this too.
This is said a lot, and to be honest, for me this statement is getting boring really, but still it's true.
Research has come a long long way, and there is still so much more too be found. In 20 years the average life expectancy has jumped from 2 to 5 to 12 to 21 to 31 to 40.
Life with cf maybe tough at times, but it makes the small good things really exciting. The really exciting things to the point of exploding i think.
I hope there are some mother's along soon. I can speak of a view of CF, and how I feel about my nephew who doesn't have CF. I know fo me, even knowing everything about life with CF, nothing would settle me if I found out he had it.
I hope some of this has touched on what you needed to hear.
Keep well, and stay strong. Your sons will thank you later on in life, if you can teach them strength now.
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05