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Calling ALL Forum Users!!!

J

julie

New member
Peter and some others had suggested an interactive FAQ and definitions for this website... So now we are going to make that happen.

I really need some input from all members/users of this form to shed light on what you think should be included.

So far, some definitions/questions are:
Sweat test
Blood/mutation test
Mickey Tube
GERD
CFRD
Why do women have fertility complications?
Why do men have fertility complications?
How many CF mutations are currently known?
What is a CF mutation?
If there is no history of CF in my family, how can my baby/child have CF?
What causes CF?
What are CF probabilities?
What is a carrier of a CF mutation?
What body parts does CF affect?
Does CF affect everybody the same?
What are some CF information resources?
What is the average lifespan?


I am hoping to add hundreds of others. I am thinking back to the time when CF was brand new to me and all the questions I had, things I didn't understand, definitions frequently used that I had no idea what people were talking about and thusfar, this is all I can think of, but will keep adding to my list.

I am asking and hoping that everone on the site might be able to help out and give some additional ideas... it would be most helpful and very useful to our newest members/lurkers and those of us still learning along the way (myself included)

Thanks to everyone in advance
 
L

LisaV

New member
What is pseudomonas? What does it mean to be colonized with pseudomonas?

For that matter, What are all of the types of bus that can colonize/infect the lungs of someone with CF?
How are they treated?

What's the difference between being colonized and being infected?

How do I get health insurance for my children?

How can I get health insurance once I am 21 if I go to college or 18 if I don't go to college?

Will getting married, effect my SSD or SSI payments? My Medicaid insurance?

How can I find out if there is speical health insurance for the disabled in my state?

I'm interviewin for a job. Should I tell them I have CF? When do I tell them? How do I find about the insurance offered with the job?

What are the ADA? How does it protect me?

I am a CFer or the spouse/parent of a CFer. What is FMLA? Who has it? When do I apply for it? How does it protect me? What is intermittent FMLA?

Will workingg effect my SSD or SSI paryments?

Can children receive SSI or SSDI? What about adults? How do you arrange this?

What is a jpg? A Mickey button? When is it used and why? How is it maintained?

Where can I find out information about using O2, in particular portable O2? How do I know how long my O2 tanks will last?

How does one "clear mucus"? What is percussion?What devices are available for clearing mucus? Where can I find information about them? What are the pros and cons of them and do they work better than manual percussion? Will insurance cover manual percussion by a nonfamily member at home and how to do you arrange/find it?

What do all those numbers mean? (FEV, FEV1, PFTs, etc.) What does it mean when they o down or up?

How can I facilitate the transition of my taking care of my cfhild's health to their doin do? At what ae should they take responsibility for their meds?

I have several kids, only one has CF. How do I make sure that my healthy kids aren't shortchanged? What emotional effect can one child's CF have on my healthier children? How can I minimize that?

How do I tell family members (including kids) and friends about my CFer (what it is and what I need/want) and what the CFer needs?

My child/grandchild/spouse/fiancee has CF and sometimes I feel scared,anry, and overwhelmed, where can I get support for myself? (I don't need to know more information abou the disease, I need help in staying emotionally OK.)

What is an exacerbation? How are they treated? What are the pros and cons of treatin at home or in a hospital?

I've heard about having IVs at home. How do you arrange that - especially if you live at home or family members work fulltime? What is a PIC line? What is a port?

I have CF, is it OK for me to use hot tubs? go to water parks? simming pools?

What do people mean when they talk about "cross-contaimnation"? Is this something I have to worry about myself, or do the clinics and other places its an issue take care of it themselves?

I have more than one child with CF, do I need to worry about cross-contamination between them? If so, how do I handle that?

I understand intellectually that CF is a proressive illness. What does that mean? Does everyone proress at the same rate? What are the stages of proression?

What can I do to slow the progression (how much is under my control and how much isn't)?

I have CF, I have lived alone in the past, but I am thinkin of marrying, will that affect what medical insurance and home care I can get?

When and why are CFers presecribed oxygen? What will happen to me if I don't use it?

Since CF is progressive, how do I measure my success at managing mine?

Can I get an HP plate or card for my car?

Sometimes I'm really weak after an exacerbation. What is the best type of exercise for me to do to get stronger? Will insurance help pay for any of that?

I live alone. With my last exacerbation, my insurance started saying that I was too sick to be at home alone but not sick enough to be in a hospital. What are the other choices and how do I arrange them? Or is there some way to get them off of my back so I can stay in the hospital for the full treatment for my exacerbation?

I think I'm doing OK with managing the phsical aspects of my CF, but emotionally, right now I'm a mess. Where can I get support? How do I find a counselor who really "gets it"? How do my spouse and I find a couples counselor who "gets it"? How do I find a family counselor who gets it?

Our house looks like a hospital room. How do folks hide all of that stuff so they don't freak out visitors?

I actually have a boyfriend/irlfriend and want to stay the night at their place sometime. How do you deal with your treatments (some what discreetly) when you're away for the night/weekend. After all, my vest is a bit bigger than a toothbrush.

I'm datin and I want to get married some time. When do people tell their dates that they have CF? On the first date? After the 3rd kiss? Before sleepin with them? After? Before acceptin the engaement ring? After the wedding? What are the pros anc cons of the timing of this?
 
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anonymous

New member
It would be neat to have this then people writing papers on CF could also use this resource.
Also could include
what is MRSA
What is burkholder cepecia
what is CFRD
why is exercise so important for all ages of ppl with cf
 
S

Scarlett81

New member
I would have one or two specific questions about cf related depression and treatment options. The yearly foundation registry includes depression in their list of cf related effects.

So many cfers, myself included battle depression, and I NEVER knew that it was common-up until I admitted I needed help a few years ago, I thought I was a weak loser. So if people could autmatically see depression on a list of questions, and treatment options-counseling, therapy, antidepressant medication-I think it would help so many people let go of the stigma. And let them see they're not the only one, and you need to take care of your whole self-not just your lungs.
 
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imondeck

New member
I know that I had lots of questions and needed lots of answers when my son was being diagnosed/tested. I have been to many, many CF sites over the last 8 months and besides the forums (which is a great one on one tool), the best and most informative site on just about any aspect of this disease is Norma Plourde's site. She updates the site regularly and I have yet to find something that she has not touched on!

Here is her link for those that are interested and haven't been there yet:

http://www3.nbnet.nb.ca/normap/CF.htm

I think the abbreviations idea is great one!
 
J

julie

New member
This is great information everyone, I really appreciate it.

While on somedays the information might seem so familiar to us, I am still learning myself (especially being someone without CF) about various things and I can't imagine (nor can I remember how I felt) the frustration and overwhelming feeling of a new diagnosis or a new problem related to CF.

This is perfect and as time goes on, we can add to this interactive list.

Thanks for the help, and please keep them coming if you have more.
 
J

JennifersHope

New member
I would think it would be helpful to have some kind of questions aimed at adults that are newly diagnoised with CF.. I know when I was first diagnoised, I was dying to talk to someone else who was also diagnoised as an adult.. I had so many questions and needed to compare stories with people.

I still like to ask newly diagnoised adults questions... I also agree about people being able to post here and have live interaction conversations as well.

Emotional responses to new onset diagnoises, Normal emotions and feelings, what your family goes through, what is the expectated emotions you may feel? Maybe like a section where ppl can share their personal stories of how things affected them.

Sorry I am tired and not writing well.... sleepy time.. I think this site has plenty enough room to have questions and answers on it as long as people don't get pissy when somone asks a question that is already answered there...

I agree that the overall feel of this board is one of acceptance and love.. I love the love that is here.. I love being able to ask a question and vent and get great support..

Julie good job on trying to improve the board, all I can think if is adding good questions about going to your first ever clinic appointment and what to expect, but my biggest thing is adults being diagnoised later in life.,, that sort of rocked my world,,

Me
 
T

thefrogprincess

New member
Ok, I may be repeating things other people have said because I really tired and just didn't have the energy to read everything here.

How do I find a CF Foundation accredited care center?

What are the nutritional needs of a CF patient?

What is merconium illieus (sp??)?

When is a transplant considered?

What can I expect at a clinic visit?

Signs and symptoms.

What is a research study and how can I participate?

How do I tell others about my CF?

My CF child will be going to school soon, what can I expect, what should I request?

I have more than one child with CF, how do I prevent cross infection?

Do I really need a flu shot?

How often should I go to clinic?

Airway clearance methods.

Osteoperosis.
 
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