Sound Off: CF Member Room

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Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 1/5/2006 5:13 AM (GMT -7)   
Hi Everyone!
 
It's time to sound off to let everyone know about you all in one thread.  Give as little or as much details as you like (except, personal info that anyone could steal from you). 
 
My name is Kathy and I live in Texas.  I am the forum moderator here on HW for the CF Room.  My twins (identical) have CF, diagnosed at 6 months. 
 
Cheers Everyone!
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
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, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 1/21/2006 7:13 PM (GMT -7)   
Since we have some new people aboard, I would like to bump this thread up. Come on everyone, post your info!
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
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, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


sitting_waiting_wishing22
New Member


Date Joined Jan 2006
Total Posts : 2
   Posted 1/21/2006 9:00 PM (GMT -7)   
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!

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 1/22/2006 4:38 AM (GMT -7)   
Kelly.....it's good to have you! If I miss saying Happy Birthday on Tuesday........Happy Birthday!! Hope your day is swell.
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
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, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


Burn
Regular Member


Date Joined Nov 2005
Total Posts : 28
   Posted 1/22/2006 11:24 AM (GMT -7)   
Hi I’m Burn I was diagnosed at a day old. Tablets I have had

Creon 25,000
Vitamin E (200mg) One to be taken Once a day
Vitamin ADEKs Four to be taken once a day
Vitamin K (10mg) One to be taken once a day
Propranolol (10mg) One to be taken twice a day
Ursodeoxycholic Acid (250mg) Two to be taken twice a day
Lansoprazole (30mg) One a day
Slow Sodium Tablets (600mg) Four to eight tablets daily with water up to maximum 20 a day
Salamol Steri-Neb Nebuliser Solution (5mg)
Chloramphenicol Capsule (250mg) Three to be take four times a day
Co-Trimoxazole Septrin Tablets (480mg) One to be taken twice a day
Salmetrerol Inhaler (250 micrograms) Inhale two dose’s twice a day
Salamol Easy Breath (100micrograms) Take when needed
Flixotide (125micrograms) Inhale Two doses twice a day
Seretide (500mg) One puff Twice a day

And the Usual IV’s

Diabeties Tabs

Repaglinide 0.5mg

I work Fulltime and enjoy computers a lot that’s PC’s not gaming machines. I have had 2 major hemiriges and one in my stomach where I vomited up blood all due to Cf of course. I try not to let it get me down. I always say Cf my try to stop me getting on with my life but I just keep on ticking yeah Im currently waiting to go for a aneurysm It should be fine. I have had one before and I'm sure they will sort it all out again for me. I always say “always look on the bright side” it could be worse. Any way that’s about it. Bottom line, I get on with my CF. I’m easy to get on with love computers and love having a fun time.

:-)

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 1/27/2006 5:23 AM (GMT -7)   
Burn! how nice of you to post the uplifting and encouraging post. Thanks!. and welcome to HW!.

I hope your site is doing well.

Hugs!
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
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, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


oppie
Regular Member


Date Joined Sep 2005
Total Posts : 33
   Posted 2/2/2006 1:48 AM (GMT -7)   
hey there, my name is olivia i am 18 yrs old with c.f. i was diagnosed at 12 yrs of age. i do my vest 30mins a day 2 a day, i do take enezyems with every meal and have to have snacks 2 a day. i am just learning to deal with my c.f. it is new to me added in my treatments everyday but i do my best, as for my friends. i told all of mine, i lost most of em, but then u truely know who ur real friends are and you r better off without those people, and the ones that r left, are like family and are always there for me when i need them.

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 2/10/2006 4:44 PM (GMT -7)   
Good to see you Olivia!
Kathy, mom to identical twin boys with CF (9yrs), daughter 20, grandaughter 2 1/2, one on the way!
 
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, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 3/24/2006 6:40 AM (GMT -7)   
Bump!
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, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


drewwww
New Member


Date Joined Mar 2006
Total Posts : 11
   Posted 3/24/2006 9:06 AM (GMT -7)   
Hello!! I have been on here for only a couple days, but my name is Drew (I'm a girl!) and I will be 20 in about a month. I was diagnosed with CF when I was 2 years old. My cousin was born with pneumonia and they tested her for CF, so as my parents read about it, they realized that those symptoms sounded very familiar and had me tested. I am doing very well CF-wise! I am attending college at Georgia State University in Atlanta, Georgia, and I will be graduating in 2007 (after only 3 years!). I had a very active childhood, which is probably what has caused me to have so few complications due to CF. When I got to college, I started to slack off both treatment-wise and exercise-wise, but I have gotten back into a good routine. I had sinus surgery in 2004, but I have managed to keep myself out of the hospital for all of my life. I volunteered to go into the hospital at the start of 2006 because I wanted more energy and heard from other CFers that IV antibiotics would make me feel like a new person. However, after spending two weeks in the hospital, I felt even worse and my PFTs were at the lowest they had ever been. Who knows?? Maybe my body is sick of all the medicine! I had a CF appointment about a month ago, and my PFTs were up significantly, so I guess my body just does want it wants to! I do several breathing treatments every day, and I usually exercise for airway clearance, with occasional hand-clapping. I take enzymes when I eat (when I remember!) and an assortment of other pills, including Singulair, Zithromax, Caltrate-D, Multi-Vitamins, and Vitamin E. I am very short for my age (although most of the females in my family are!), but I have an easy time maintaining a healthy weight. Although the CF doesn't affect me too much physically right now (knock on wood), I have been fighting a constant mental battle with it ever since I've been in college. It's hard to grow up and try to make life-choices when there are constantly statistics hanging over your head. Well, I think I've probably crossed the limit of how much I should say before people stop reading, so that's all I'll say for now! I am actually finishing up a treatment before I go for a CF appointment at 12:30. Hopefully I'll hear some good news! I look forward to getting to know all of you!

<3drew

mommyscfbaby
New Member


Date Joined Mar 2006
Total Posts : 19
   Posted 3/24/2006 12:54 PM (GMT -7)   
Hi Congrates on the new grandson! My name is Heather and we found out our 6 week old son has CF 5 weeks ago.He is taking one enzyme with every feeding and they just taught us how to do his chest pt. Trying to learn all we can to give him the best possible life

Robertson
Regular Member


Date Joined Nov 2005
Total Posts : 21
   Posted 3/31/2006 1:14 PM (GMT -7)   
My name is Mark Robertson, I'm 42 and have CF. I live in Oregon yeah
 I'm two and a half years past my double lung transplant, and doing awsome.


pour on the fat and hope for the best

Post Edited (Robertson) : 3/31/2006 1:18:16 PM (GMT-7)


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 4/1/2006 7:15 PM (GMT -7)   
Hi Everyone!

Good to see you all and welcome! I am glad and feel so fortunate to know each and every one of you. I as a parent feel that I can learn from what you say here on HW. Heck, everyone can learn a little something here. So, keep the info coming!.

Robertson, awsome! and I have a ? for you. Since you have had a double lung transplant, does CF show up in your lungs now? I knew of someone who had a transplant that once the transplant was done that CF is no longer a problem within the lungs, is this fact or fiction from your understanding from the transplant team?

Hugs to everyone!
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, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


Angela13
New Member


Date Joined Apr 2006
Total Posts : 13
   Posted 4/3/2006 9:44 PM (GMT -7)   
Hi Guys

I have been here before, and lost my login information so I re-registered. My name is Angela, and I live in Halifax, Canada..way to the east! The reason I am speaking in these forums, is because I had a sister, Beth, who passed from CF in 2004. I want to help any way I can to others who have CF, or have a loved one with CF.

CHEERS!
-angela

Post Edited By Moderator (Admin) : 4/4/2006 9:54:12 AM (GMT-6)


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 4/5/2006 4:01 AM (GMT -7)   
Angela,

Sorry to hear about your sister. What was her age?
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, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


Robertson
Regular Member


Date Joined Nov 2005
Total Posts : 21
   Posted 4/8/2006 12:36 PM (GMT -7)   

hey Twinstride,

answer to you question. My lungs are perfect. My PFTs are in the high 90%

I feel awsome. yeah


pour on the fat and hope for the best


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 4/9/2006 7:53 AM (GMT -7)   
AWSOME! How wonderful!!!

How's the rest of you doing that CF affects? Also, at your age, do you have a raspy voice?
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, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 4/12/2006 4:41 AM (GMT -7)   
BUMP!
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/


grl22
New Member


Date Joined Apr 2006
Total Posts : 11
   Posted 4/12/2006 5:51 AM (GMT -7)   
Hi every one!!
 
  My name is Neely i am a 22yr old with CF and diabeties! i was diag at 5yrs old on a trip to Australia, even tho i was a very sick baby it was never picked up. I had a bowel obstruction at 6weeks old and many other tell tail signs of CF before i was diag. I was realitivaly healthy growing up my first admission arter i was diag. was at 12yrs old (alough i had some narrow escapes) After that it got more and more each yr, at 16 i was diag with diabeties (bgl of 57.4) the worst part was it was easter :( so i had all my chocolate sitting there, and couldn't touch it (unfair lol) i got my port inserted at 17 and it is still in and flowing well now :) I am underweight thats not fair but there is a plus side to every thing i get to eat any thing and every thing while all my friends sit with there salads and small peices of fruit :) (i would hate to have to worrie about my weight to the point i spent every day starving it's better to worrie while you fill up on a big greasy burger and fries) my lung function is currently 1.3 we don't do it by % here but i'll ask my dr what it would be as a % and post it later :).
  I have a lovely mother who is wonderfull and supportive and would do any thing for me. I have 4 brothers ages 24, 16, 14 and two, the 2 yr old has my step dad and the others and i all have the same dad, i have a rocky relationship with my dad unfortunatly but i try thats what counts. There is no other person in the family with cf! only carriers :)
  Thats enough about me i think for one day :)
 
:-)  Neely :)
All is never lost, just some times missplaced!

kristins mom
Regular Member


Date Joined Sep 2005
Total Posts : 27
   Posted 4/12/2006 9:20 AM (GMT -7)   
Hello everyone! My name is Kathy and I am a CF parent. My daughter Kristin passed away 11/00 from CF complications (respitory failure) at the age of 10 but I have a 7 year old son (also has CF) that is doing extremely well. I moved to southern Oregon from Texas 5 years ago and found that treatment regimes differ quite alot from one clinic to the next. Has anyone else encountered that problem? My kids were almost opposite in severity, Kristin had severe problems that normally didn't show up until late teen (on average) before she was 6 but my son has only had upper respitory (sinus) problems that was easily controlled with oral a.b. Thru this experience, I have discovered one on the most important things to have (besides an excellent medical team) is mental/emotional support so I'd like to encourage any new members to speak up on the forum--I learn something new everytime I log on!!!! It also helps to know that there are alot of people that know EXACTLY how you feel and what you're going through--something that is very hard to find outside the "CF family". Keep on taking one day at a time and never stop having dreams for the future.

Robertson
Regular Member


Date Joined Nov 2005
Total Posts : 21
   Posted 4/13/2006 3:25 PM (GMT -7)   
hi twinstridede
No my voice is fine. as for the rest of me, working good although my sugars have been bouncing around lately
pour on the fat and hope for the best


Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 4/16/2006 4:32 PM (GMT -7)   
Oh Kathy, I am so sorry to hear about your daughter being of such a young age passing away. My boys are 10 right now and what a blessing to have them around. Just what mutation did she have? or do you know?
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/


kristins mom
Regular Member


Date Joined Sep 2005
Total Posts : 27
   Posted 4/18/2006 9:34 AM (GMT -7)   
Morning Twinstride-- Both she and her brother have the delta F508. Somewhere in all my stuff I have the dna breakdown the doctor ordered so we could compare it with a screen from her brother once he was born (that's how we knew so quickly that he also had CF). I do remember that mutation though.

Chaser
Regular Member


Date Joined Apr 2006
Total Posts : 91
   Posted 4/18/2006 7:17 PM (GMT -7)   
My name is Liz. I'm 24 years old, and was diagnosed at 6 weeks of age. My mutation is double delta f508, I have digestive problems and mild lung involvment. I was diagnosed with diabetes at 14 years of age, and had a severe episode of hemoptysis 2 years ago which required a pulmonary embolization. I take 5 enzymes with every meal, take 1 tablet of zithromax every monday, wednesday and fridays to keep lung inflammation at bay, I'm also on Symbicort and albeuterol twice a day and am on inhaled Tobra one month on, one month off. I also take a couple of supplements to help with infection, etc. I take one tab each of Oil of Oregano and garlic daily. Oil of Oregano is very beneficial at combating all sorts of bacterias in our lungs, especially Pseudo. If you like, I have a lot more info on the oil of oregano. I definitly notice a difference now that I'm on it. I do physiotwice a day which consists of me using a precussor, as well as the Acapella Choice every other day. I also take Ranitidine for acid reflux. I currently don't work - I had to quit my job due to stress, weight loss, and continually feeling run down, but hope to find part time work very soon. Just a little bit about me.

Twinstride
Regular Member


Date Joined Sep 2005
Total Posts : 318
   Posted 4/19/2006 4:15 AM (GMT -7)   
Hi Liz,

Thank you for your addition to our member room!.

This is kinda interesting about the oregeno and garlic. Can you email that info to me? Womanoftx@aol.com 
 
Thanks!


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/

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