How do you view CF?

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sweetblood
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Date Joined Nov 2007
Total Posts : 19
   Posted 11/10/2007 12:48 AM (GMT -7)   
I think my signature discribes me perfectly!
A mighty oak is the result of a nut that held its ground.


sweetblood
New Member


Date Joined Nov 2007
Total Posts : 19
   Posted 11/10/2007 1:02 AM (GMT -7)   
a blessing from God? I dont think so. I am told that God can do anything, well Im waiting for him to heal me. CF is so rare, I dont know why I had to be born with it. any1 who says its a blessing has no idea what there talking about
 
God can do anything. God will heal you, if not in this lifetime, if you have faith, you will be grabted freedom from cf. I have witnessed God act in awesome ways. I've heard the bones of a man with a crippled arm crack back into place while a bunch of us were praying over him. I'm not lying. I've felt and angel with me, and I know God will heal me. Faith is the key. God gave you cf for a reason, he knows you can handle it, and if it seems like you cant, turn to God, He will not leave you. I know I'm only 14, but cf has forced me to grow up fast, and I know and Love the Lord. I am asking you to please talk to me if you want help knowing God, my email adress is leah_hollis94@yahoo.com I know you might not respond to this, but I hope you will. May God be with you, you are in my prayers.
-Leah
A mighty oak is the result of a nut that held its ground.


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 11/10/2007 4:31 AM (GMT -7)   
Please read the forum rules:

10. No posts of an overtly political or religious nature OR posts promoting advocacy of particular personal, medical, legal, religious, political, or non-profit causes. The forums are intended for offering mutual personal support. Debating controversial subjects should be taken elsewhere. Limited religious references are allowed (ie. "my prayers are with you" or a brief quote as part of a larger post), but the forums should not be used to convert others.

Please end the discussion of the existance of God.
Thankyou!
Gem


Co-moderator in the: Cystic Fibrosis Forums
 
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05


sweetblood
New Member


Date Joined Nov 2007
Total Posts : 19
   Posted 11/10/2007 4:43 PM (GMT -7)   
Oh, I'm really sorry, I didn't know. I wont do it again.
A mighty oak is the result of a nut that held its ground.


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 11/13/2007 4:04 AM (GMT -7)   
It's ok sweetie.

I'd been reading the thread, and keeping a close eye on it but leaving it alone. It just happened to be your post where it went too far into religion.


Co-moderator in the: Cystic Fibrosis Forums
 
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam, slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05


travelingpink
New Member


Date Joined Jan 2008
Total Posts : 1
   Posted 1/2/2008 8:41 PM (GMT -7)   
I am 17 and Have CF. I have always looked at it in a positive light and am grateful that I was given the chance to have this disease. I use it to promote awareness and help look for a cure. The only thing that upsets me about it is the lack of awareness throughout the country, but I hope to change that one day.

hlady
New Member


Date Joined May 2008
Total Posts : 1
   Posted 5/21/2008 6:02 PM (GMT -7)   
It's hard to say.  My daughter died in October, 1999.  I've read some of your comments and agree with all of them.  I remember my daughter saying the same things you all are.  She hated CF.  I didn't understand until after she was gone what she was really saying.  I didn't see her as being different.  She was thin.  She would go through periods of being sick.  But otherwise she did everthing everyone else did.  She loved CF camp.  I thought it was because she got so much attention there and it was fun.  But it was really because everyone there had the same problems and she said that was the only place she felt normal.  For one week out of the year she felt normal.  That is sad.  I'm sorry that anyone has CF.  It isn't a punishment though.  When she went to the hospital there was always someone there with worse problems than hers.  And that's how we looked at it and was able to be glad not to have those problems.  I took my daughter to different doctors to see what else we could do.  It wasn't until after she was gone that I found some important information that could change anyone's life.  If anyone is interested please contact me.  Don't forget that mom and dad probably hate CF as much as you do.  It's hard to watch your child suffer.      tongue

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/22/2008 6:22 AM (GMT -7)   
Dear hlady
Welcome to Healing Well and the CF Forum.  I am Kitt.
 
I am so sorry your daughter died and as a Mother we share that.  I lost my son to a car accident when he was 21 years old.
 
I want to thank you for posting here to the others as your words are so supportive and caring.  You have lived the life of a parent with a child who had CF.  I believe you have great wisdom and caring.
 
Again a warm welcome.
Kitt
 
Kitt, Moderator: Anxiety ~ Panic 
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


Concerned aunt/mom
New Member


Date Joined Jun 2008
Total Posts : 5
   Posted 6/8/2008 8:33 PM (GMT -7)   
This is my first day on the forum and I don't really know what to think, everything is too fresh and new. I am one of five children. Between all of us we have 16 children of our own and there are now five grandchildren. I have always felt so blessed that we have had no major health issues. I mean look at the odds. With all the things that could happen. We have really beat the odds. Until now. My nephew was just diagnoised with CF at age 22 and now all the kids may be at risk and at the very least might be carriers. I don't know how to feel or respond. To be quite honest I think it sucks. And my husband doesn't understand why I'm all upset. He doesn't get the whole genetic issuse. The fact that my sister genetically gave this to my nephew doesn't seem to click with him that I too could carry the gene. Therefore our kids could be at risk. Now I do realize that it takes two gene to result in CF, but potentially the risk is there. And given that my nephew was so old when diagnoised then potentially all the other kids could be just as old and not know, right?

BabyEllie
New Member


Date Joined Jul 2008
Total Posts : 5
   Posted 7/3/2008 12:01 PM (GMT -7)   
Hi......You could have the father of your children tested to see if he is a carrier.  It's done by a blood test.  If he is not, then your children won't run the risk.  Chances are he's not a carrier.  But if he is...meaning you both are, your children can be tested to see if they have CF, then you will know for sure and won't have to wonder and worry.  Usually symptoms show up earlier in life from what I'm finding out.
    Best wishes :-) Rose

BabyEllie
New Member


Date Joined Jul 2008
Total Posts : 5
   Posted 7/3/2008 12:03 PM (GMT -7)   
You can have all the parents be tested for the CF gene and that way you will know which children will be at risk. Only one in four will get CF even if both parents carry the gene....
Rose

pahiatua
Regular Member


Date Joined Feb 2007
Total Posts : 43
   Posted 10/10/2008 11:05 PM (GMT -7)   
I'm 15 and I really don't remember a time when I didn't know that i had CF. My parents were a bit radical with my treatment, no physio. Simply because they didn't have the time since they were both working full time and i have two older siblings. For me this seemed to work well, instead of physio I would swim heaps and play lots of sport. I go to school every day and no one there apart from a few friends know that I have it. It really sucked when we were doing genetics in science because our teacher had all the wrong information and it was quite upsetting some of the things that she said. Despite my mum complaining to the school and all that she seems to hold her ground on her views of CF sufferers. I suppose I'm luckier than most since I've never been hospitalised apart from the odd hiccup such as infections in my ankle bones. CF isn't really one of those things that I dwell on really. I've recently given up sport (much to my parents horror) and nothing has changed yet. When i was little I went through a phase where I wouldn't take my meds and I would do this so that I would feel "normal" again. Since growing up a bit more I've realised that having CF isn't so bad really, I get to eat what I want and miss a few days of school here and there and I suppose I'm just that optomistic about life :D
Don't let anyone tell you that you aren't unique, being a sheep is boring. Have your own personality and live it to the fullest
Support 65 Roses Day, 25th May And Help Find A Cure


Bennysmom
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/14/2008 11:24 AM (GMT -7)   

Can someone answer a question for me please:

 

If you have a "carrier" status of CF, Can you still have CF symptoms?


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 10/14/2008 11:56 AM (GMT -7)   
You can, but you probably have another CF gene mutation that science cannot yet detect. I don't believe one single gene will do anything, though many people claim too be carriers with full blown CF. From what I've been told my my docs and other hospital staff, you have to have 2 genes, one from each parent.

Hope this helps and makes sense. If not, tell me which bits and I'll try and clarify.

Gem
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
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


Bennysmom
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/14/2008 1:39 PM (GMT -7)   
Thank You Gem.
My son who is two has one gene (from my husband) But has had numerous symptoms of CF. Mostly digestive. We are currently seeing a GI and going for a second sweat test because they said the first did not test for a full mutation panel???? Does that make sense? I am just wondering if he is having symptoms because he is a carrier? His recent labs showed normal except for Fat in his stools that they said they are looking into further. I just feel lost because I thought our scare was over when he was a newborn.
He did test positive for one mutation through newborn screening and had a negative sweat test showing his carrier status. But, Could he have had a false negative and what are the odds of that. I know I am rambling on but this is the only site I have found that actually makes sense other than the hospital sites with a quick overview.

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 10/14/2008 2:15 PM (GMT -7)   
I'm not sure of the exact odds, I think it's like a 2% chance of being a false reading.

The best thing will be have another sweat test, and see what those results show. Only then will you know for certain I think.

People with CF sweat 100% more salt than a 'normal' person, which is what the sweat test tests for-chloride levels in the sweat. You can either get a negative, borderline or positive result. The borderline result is a real grey area, and it is decided on someone having CF depending on symptoms.

With genetics side of CF it's awkward. There HAS to be one gene from each parent to make a whole one. However, as I said, they can only test for a small percentage of CF genetic mutations.
There are many different mutations, and the ones they have found, seem to have definate differences in how the gene effects people. Also the rest of your genes in your body can counteract certain parts of the CF gene, which is how you get 'milder' versions of CF.

The sweat test is the most accurate tests, and is about 98% accurate.

Don't worry about rambling on, anymore questions please ask. I'll give as much info as I can. Though, off to bed now, as I'm from England and it's getting late, so will respond in the morning.
I'm not an expert on CF, only really on my own experiance of the condition, and most of my info does come from internet research I've done over the years.
I think things are a lot harder when you don't know exactly what you're dealing with, so I try to keep up-to-date with everything.

Night night!
Gem
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
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


EternalOptimist
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/3/2009 10:53 PM (GMT -7)   
Hmmm... how I view CF is very complicated thats for sure. For starters, I am 23 years old, was diagnosed when I was 6 months and have it very mildly.
For the first 16 years of my life, I was pretty much in denial. I never felt comfortable telling people, even close friends .. because even if they didn't mean to and I stressed the mild part.. they looked at me differently. I was never comfortable with boys... Until I met Brad. We had been friends for awhile and he knew everything about me before he asked me out. We've been together now for 6 years, and he has given me a lot of courage. He suggested that I go to a CF support group to talk about what it was like for others. All I can say is I've met the most amazing, kind, inspiring people through them, even though I've lost quite a few friends along the way.

Peace and love!
-Melissa

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 3/4/2009 6:50 AM (GMT -7)   
Wow, a CF support group-I'm jealous!!!! Our cons would have a fit if we had one over here. He goes mad at the slightest risk of cross-infection between patients lol.

I do have a few friends with CF. We always used to play together as kids, and there were no cross-infection rules back then. I miss those days, as friends with CF can be so valuable! But, as you say, you lose people along the way, which is so sad. I have met some people with CF, who have such beautiful hearts though.

CF can be so lonely sometimes, if you don't find that right support. I'm glad you've managed to find some.
Gem
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, Ondansetron, Nefopam, Ursodeoxycholic Acid,  Lofepramine, Slow-Sodium, Azithromycin, Ciprofloxacin, 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 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


EternalOptimist
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/4/2009 2:21 PM (GMT -7)   
What are cons? If one of the kids had PA or staph, they had to wear an N95 mask. These forums are a great way to interact though too!

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 3/5/2009 12:38 AM (GMT -7)   
Consultant, lol sorry about shortening it.

I think even if we have masks our consultant would have something to say about us cross-infecting-because you could touch the same door handle etc. He's very strict about it.

I never agree with how strict he is though-I'd be happy to wear a mask if it meant I could talk to people the same as me, but he says no, and goes into a cross-infection lecture at slight even acknowledgement that there's another cf patient on the ward.
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, Ondansetron, Nefopam, Ursodeoxycholic Acid,  Lofepramine, Slow-Sodium, Azithromycin, Ciprofloxacin, 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 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.


EternalOptimist
New Member


Date Joined Mar 2009
Total Posts : 11
   Posted 3/5/2009 11:47 AM (GMT -7)   
I'm just wondering .. Do you guys not all go to the same clinic for CF appointments?
Hi! I'm Melissa from Canada. Very mild CF. Diagnosed at 6 months.
I want to live where soul meets body
And let the sun wrap its arms around me
And bathe my skin in water cool and cleansing
And feel, feel what its like to be new
?


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 9/1/2009 6:09 AM (GMT -7)   
EternalOptimist-

We do have specialist CF clinics over here. The clinics are completely cut off. You're led to a single room and everyone comes into see you like doctor, nurse, physiotherapist, dietician. You can only have clinic days on specific days, where everyone in on that day has your bug. You're only allowed upto the clinic on any other day of the week, if it's an emergancy.
If there is someone in clinic who doesn't have your bugs, then you have to use an alternate entrance so you're not even passing by their room.
After one person with CF leaves a room, all surfaces and chairs have to be wiped with alcohol rub and left to settle for half an hour before another person with CF can enter that room.

On the ward is a different story entirley. We're not supposed to mix, but do as soon as the CF team leave the ward. But only if we're carrying the same bugs. I have a few friends who carry the Liverpool strain of Psuedomonas same as me, they're the people I've known since childhood. But not everyone does. I won't mix with people who can't tell me what bugs they have.
We share 1 bathroom and 1 toilet, unless you get one of the special rooms that are onsuit. But those rooms are disgusting in other ways, in that they have a bad habit of flooding out with sewage when the pipes block up.
We each have a room, to keep us protected from the elderly patients on the ward, and too keep them protected from us.......We're young, we get bored easily lol, laptops, music and TV and maybe a games console we take in to stop the boredom.

We did share a kitchen on the ward, but I think that might have been closed down, I'm not sure as I had my last lot of IV's at home.

We're soon getting a proper CF ward built, with all new stuff. Sounds good, but I can imagine room confinement actually coming into full force........They best make the room nice too stay in. :P
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:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.

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