It's a fantastic idea for you to be doing this.
With my mum, even though she's a psychiatric nurse and done papers on CF, it feels like she has absolutely no clue still when it comes to CF and offers only irritation rather than understanding. However, I don't know what side she did to CF-if she did it from a doctors point of view-I'm sure some of them still think CF is a piece of cake. I think the study you seem to be doing is a good one which you and others can gain understanding from. CF is a very individual thing and varies a lot between patients. CF can cause a lot of secondary problems, such as liver cirrohsis, kidney trouble, tinnitus because of some of the meds commonly used to treat infections, diabetes. However it also doesn't effect things such as the eyes (there is no CFTR protein in the eyes, however of course medication still might cause problems) and apparently CF hearts are very healthy due to the fact they get extra exercise trying to compensate for CF lungs.
I am going to ask you, if it's possible for you to email our admin with your ideas before posting them. We're technically not allowed studies of any kind on here, without Peter's permission. However this isn't a research study, and I definately think it's something you could gear as something helpful to everyone on here-patients themselves, parents and other family, and also people just wanting to learn more about
CF in general.
You can contact our Admin Peter by emailing at: admin@healingwell.com
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, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you: https://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.
andrdyb
New Member
Joined : May 2009
Posts : 9
Posted 5/15/2009 9:43 AM (GMT -7)
Darkies,
Thank you so much for your guidance. You're right - this would be a totally different approach. Not looking at the medical directly, but more looking at the cultural "norms" that develop somewhat consistently in CF families, despite the fact that every CF patient is different. Things like...how does a CF child affect family size, how does it affect family relationships, are things different for male versus female patients, what are the typical views about marriage/family/work/career...etc. I think I've been guilty of "not getting it" also and I think that learning from CF patients who are not my child will really help me "get it" better when dealing with my own daughter. It's like you can't see the forest for the trees sometimes you know? Sometimes you have to get out of the forest to gain a clear view. I will email Peter right away. Like you pointed out, I'm hoping to educate not only myself, but as many people as I can. The more people understand the million and one ways (not just medical) CF affects a person's life and everyone they love - the more motivated they will be to support care and a cure. I'm particularly concerned that the mental and emotional health of CF patients doesn't get enough attention. Understandable since the physical is primary, but thank the Lord, a researcher at UM is conducting research on how mental health affects physical health outcomes in CF patients. Exciting stuff!
andrdyb
New Member
Joined : May 2009
Posts : 9
Posted 5/15/2009 9:46 AM (GMT -7)
Oh - I don't know if you could turn off the ability for people to reply to this posting (or delete it), as I don't want to violate any regulations. Once I hear from Peter, I'll post a fresh topic.
Gemsi
Veteran Member
Joined : Feb 2007
Posts : 1050
Posted 5/16/2009 9:01 AM (GMT -7)
I can delete the thread and posts, but only Peter has the ability to lock it.
There's nothing breaking rules so far, so I am happy to leave this thread here, until you get permission from Peter, don't worry:)
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, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 04
Help support the forums so we can support you: https://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.
Currently it is Tuesday, December 18, 2018 2:14 PM (GMT -7)
There are a total of 3,028,313 posts in 331,176 threads.
View Active Topics