Sound Off: CF Member Room

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imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 4/21/2006 9:03 AM (GMT -7)   
Hello all. Longtime lurker (since Aug. 05). My youngest (son, 11) sweat tested positive 2 times (due to failure to thrive, and salt crytals on face) in Aug. 05. No mutations have been found (tested with Genzyme, than Ambry). He had a T/A in early Jan. (rough recovery), but is doing fine now (other than not gaining enough weight and possible nose polyps forming). He sees a private pulmo every 3 months.

I have 3 other children (young adults) that are very active and healthy. Hubby retired from the U.S.A.F after serving for 22 years and now is a civilian with the DOD.

Oklahoma is where we choose to put down roots and make our "home" - we love it here!

Sandra

anthonys angel
New Member


Date Joined Apr 2006
Total Posts : 1
   Posted 4/22/2006 5:49 PM (GMT -7)   
My name is Jill and my son is 12 yowcf, i also have a daughter 16 wocf. Anthony has one copy of G551D and his other mutation has not been identified. he has pseudomonas and a G-tube. he is on Bactrum all the time. and tobi one month on and one monthe off. things are generally pretty well. He does miss alot of school. We are very greatful for our doctors at the childrens hosptial philadelphia. I look forward to chatting with everyone.
 
Anthonys Angel

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 4/22/2006 8:01 PM (GMT -7)   
Well Welcome Ladies....Sandra and Jill.

Thank you for posting your info where everyone will get to know you and you know them.

We know you will enjoy posting with us here. If you need a shoulder to lean on here we are!.

Hugs!
Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, a shoulder to lean on, and answer your questions as best we can.  Don't hesitate to step on in and enjoy and remember!  "Never give up hope for a cure" one day we will get there!".  

To support HealingWell.com, follow the link below or click "Donate" on the top menu: 

http://www.healingwell.com/donate/


OnlyA
New Member


Date Joined May 2006
Total Posts : 6
   Posted 5/19/2006 2:20 PM (GMT -7)   

I am from texas and have 3 children a son who does not carry the cf gene, my son who has c.f. and a daughter who is a carrier.  i just wanted to chat with other who go through the same things that i do and also for my family who think i need to chat with other.  i hope to here from you and make some new friends. cool

 


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 5/19/2006 2:23 PM (GMT -7)   
OnlyA, I am from Texas too! (Houston that is) welcome to the CF Member Room!.
Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, a shoulder to lean on, and answer your questions as best we can.  Don't hesitate to step on in and enjoy and remember!  "Never give up hope for a cure" one day we will get there!".  

To support HealingWell.com, follow the link below or click "Donate" on the top menu: 

http://www.healingwell.com/donate/


OnlyA
New Member


Date Joined May 2006
Total Posts : 6
   Posted 5/19/2006 2:30 PM (GMT -7)   
i live in pearland so we are neighbors...thanks for the welcome...onlya

Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 5/19/2006 11:44 PM (GMT -7)   

Hi I am Sea 2

Thanks for the welcome Twinstride and mommyscfbaby.

My grand daughter, Leah wcf is 15 weeks old and is an absolute treasure.  She has vitamins, Ketovite, Flufloxicillin on a daily basis and 1 and a half Creon capsules with every feed.  She has physio four times a day. 

 My daughter is amazing.  She has shown such strength.  Leah was born 45 minutes before her 21st birthday by emergency Ceasarian because of placenta preavia.  That was scary enough for her as she was bleeding heavily and Leah was in distress in the womb.  Then to be faced with a baby who you are feeding every couple of hours who doesn't put weight on and the midwives keep blaming it on the bad birth is so worrying.  However, through it all she has been so  brave.  I really respect all you mums of lpwcf and pwcf who have the same to face every day.

If I appear to post at weird times it's because I live in the UK.  But my brother lives just outside San Francisco so first thing in the morning here is a good time to ring him.  It is 7:45 am here (a bit too late to ring now).


dmeyers 118
New Member


Date Joined May 2006
Total Posts : 13
   Posted 5/29/2006 5:45 PM (GMT -7)   
sitting_waiting_wishing22 said...
Hey! I'm Kelly, a 15 (16 on Tuesday!!) year old with CF. I was diagnosed at 6 months, and have found out over the past year that I'm diabetic. I also have nasel polyps (spelling?) and have to have surgery every two years. I take 4 enzymes with every meal and 2 or 3 with snacks. I use the therpy vest 30 minutes twice a day. I also use this other breathing thing called the PEP. I also take other pills for my liver and I'm on iron supplements. I have only told one of my friends my entire life. I'm afraid that my friends would ditch me because "they can't handle it". I've been going through a tough time latley coping with it, and would love to be able to talk to someone else with CF. I have an xanga http://www.xanga.com/weeble22 and yahoo messanger: volleyballkid88. Hope to talk to some of you soon!

dmeyers 118
New Member


Date Joined May 2006
Total Posts : 13
   Posted 5/29/2006 5:53 PM (GMT -7)   
hi everyone my name is debbie i have a grandson bryce who has cf he is 2 we have learned so much in the past 2 years, we are having trouble with petty pats he just does not what to do them also we are starting a new study with new enzymes that are easier on his stomach . we have high hopes. this is a wonderful web site would love to here from all of you debbie

Post Edited (dmeyers 118@aol.com) : 5/29/2006 6:56:20 PM (GMT-6)


imondeck
Regular Member


Date Joined Apr 2006
Total Posts : 105
   Posted 5/29/2006 7:14 PM (GMT -7)   

Hello Debbie and welcome!  Let us know how the new study with the enzymes go.

 

 


Sandra
 
Absence is to love what wind is to fire, it extinguishes the small yet enkindles the great...


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 5/30/2006 5:49 PM (GMT -7)   

Welcome Debbie to HW!  tongue

With time, things will get easier, I promise!! yeah    It will become a routine like brushing your teeth. 

Enjoy your time here and thank you for the compliment!

We are here for you, hugs!

Kathy


Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
 
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
 
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, a shoulder to lean on, and answer your questions as best we can.  Don't hesitate to step on in and enjoy and remember!  "Never give up hope for a cure" one day we will get there!".  

To support HealingWell.com, follow the link below or click "Donate" on the top menu: 

http://www.healingwell.com/donate/


dmeyers 118
New Member


Date Joined May 2006
Total Posts : 13
   Posted 5/31/2006 6:55 PM (GMT -7)   
kelly
Happy birthday! Do not be afraid to tell your friends, your real friends would want to know and would want to help you and learn more about it to help you cope with this. Last May we went to have dinner and listen to Boomer Esiason speak here in Cincinnati he was telling us how his son went to camp that past summer and his mom and dad had to teach them to help him with his vest and cpt. Your friends will understand. I don't have cf but as a mother of child who does have it, it is not a big deal and i promise your friends will understand. If you ever need any one to talk to you can email me i am 25 and i still remember when i was 16. brycesmom1003@aol.com Do not be afraid of anything you get up every day and do all you need to do to keep well, i am sure you need someone to vent to and thats what your friends are for. Have a great day hope you get everything you wanted. Happy Birthday!

Sea 2
Regular Member


Date Joined May 2006
Total Posts : 69
   Posted 6/1/2006 9:16 AM (GMT -7)   

Hi all,

Grandma to Leah here.  Last week she was supposed to weigh 11lb 13oz which was a massive leap in weight and seemed suspicious(from 10lb 6oz the week before).  This week when she only weighed 11lb 2oz the clinic decided they had converted the kg to lbs wrongly last week.  However, she is still heavier than a fortnight ago but not as much weight gain as we had hoped for. Got to remember though that Leah was fighting bronchiolitis so you can't have everything. On a more cheerful note Leah seems much happier again this week and is not coughing as much.   We have bought an air purifier which seems to have stopped the morning coughing fits.  Fingers crossed.  Also she is having supplementary solids once a day now which seems to alleviate her constant hunger somewhat. 

Just a natter, Sea 2


dmeyers 118
New Member


Date Joined May 2006
Total Posts : 13
   Posted 6/15/2006 11:24 AM (GMT -7)   
hi everyone debbie here wanted to drop a few lines my grandson bryce has cf age 2 doing well starting new study at childrens in july new enzymes also still having a battle with pettypats does not want anything to do with the vest still trying. these childrens have a big fight ahead of them bryce is our blessing. all of you hang in there things will get better we pray everyday for all of these childrens and get envolved with great strides to help find a cure.
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