New here!

[LouLou]

Hi, my name is Lauren. I am a 27 year old female with CF. I was diagnosed when I was age 2 due to multiple bouts of pneumonia. I was blessed to have a mother that stayed home with me and made keeping me well her full time job. My father slaved away in corporate america always keeping us with good med. insurance. I had a 'normal' childhood only being hospitalized at age 2 and 5 then not until 1999 when I was a Junior in college. I played soccer and tennis with pft's near perfect through high school (not without hard work though). I've attended 7 different clinics around the US moving from here to there for my dad's job. I took 'ownership' of my CF when I was somewhere around mid high school age. Then I went to the University of Illinois at Urbana-Champaign and earned a bachelor's degree and have been working full time since 2001. I married my college sweetheart in 2003. We recently had him tested and he is not a carrier (thank God!!).

As for the nitty gritty: I have one Delta F508 and the other gene is not very common - can't remember it off hand. I have Pseudomonas (non-mucoidal) and Pseudomonas (mucoidal). My FEV1 and FVC are ~ 70%. I battle with hemoptysis with no embolizations performed. I have never had a problem with keeping weight on. I consider myself healthy at 5'3" 125 lb. If I drop to 115 (which is where I tried to stay in high school) I can't bounce back as quickly from infections. I started coming to the site researching pregnancy and b. cepacia. Neither of which am/have - just researching..

I think this site is fabulous!

 

[JazzysMom]

Well thank You for telling us about yourself & welcome!

 

[Faust]

Hi Lauren nice to meet you. My name is Sean and I model Flag thongs at wedding parties. Hope you are doing well. My pic is encloded in this post. Let me know if you need me for any thong modeling you may require at weddings.


P.S. I work oiled or non oiled.

 

[anonymous]

Boy, Sean--you are the most buff CF male I have ever seen- it seems a little hard to believe<img src="i/expressions/face-icon-small-shocked.gif" border="0">
Hope

 

[JazzysMom]

WARNING WARNING......PAY NO MIND TO SEAN DAVIS.....WARNING WARNING....ODD MAN....WARNING<img src="i/expressions/face-icon-small-disgusted.gif" border="0">

 

[Faust]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Boy, Sean--you are the most buff CF male I have ever seen- it seems a little hard to believe<img src="i/expressions/face-icon-small-shocked.gif" border="0">

Hope<hr></blockquote>


I eat my wheaties Hope. I also belong to Oprah's book club, and read whatever she tells me to. I think that's what did it.

 

[anonymous]

Sean,
Ummm.....Okay what ever you say.
Melissa, I kind of am onto him by now, but thanks for the warning! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hope

 

[julie]

Sean, I can't tell if you are trying to be funny (and no offense, but doing quite an offensive job) or if you are serious. Either way, things like this might, actually ARE more appropriate utilizing the PM feature. Just be careful, it appears you have offended some people on here, or at least put them off and if you are proud of the size/shape of your body despite the CF-GOOD FOR YOU!!!! Seriously, be proud of it, share your diet, workout routine, what works for you.... but don't get sexually inappropriate please.

 

[Faust]

pppssstttt hey Julie. That's not me. And what part was sexually inappropriate? The wheaties, the oprah book club, or modeling at weddings in a thong?

 

[anonymous]

please help !!! my son has had a cough for the last three weeks. he had a sweat chloride test done today and the results came back as a 59. i can only find information that says this means high borderline, what does this mean exactly? he has not had a continuous cough or gi problems. when he was a new born he had aspiration mucnium and had to spend his first night in an oxygen hoody. he was also taking zantac until he was about 6 months old because we were told that he had reflux. i took him into the doctor a lot his first month because he spit up everytime he ate and had a terrible cough. after he was off the zantac he hasn't had any problems except for the ususal daycare runny nose, until lately. his first birthday in on february 3. i have an appointment at his doctor's office tomarrow because they think that he might have pnemonia and needs a chest x-ray. he started a nebulizer treatment on last thursday and it seems to have helped with his cough and wheezing. tell me anything you can about having a test that reads 59. i am going crazy.

Breanna Caras

 

[Alyssa]

Breanna,

You might want to start a new thread for your question so more people see it. But to answer your question about the sweat test at 59 -- it is on the low side, but it is (as far as I know) a positive result. I have been told that borderline is 40... well I take that back, yes.... 40 to 60 is borderline but given his other symptoms with a 59 I would think he could be diagnosed with CF -- your docs might want to do further testing for sure. A blood test (genetic) testing would be good, but some people find they still end up with inconclusive results because it might only find one identified gene, not the needed two genes. But that can be found out later for now it sounds like he is starting to get the treatment that he needs -- what is the nebulized treatment you mentioned? Many people with CF use albuteral (to help open the airways), pulmozyme (to thin the mucus in the lungs so it is easier to cough up) and tobramycin (tobi) which is an inhaled antibiotic.

Keep learning what you can and push for the genetic testing to be done. I hope your son feels better soon.

Oh, and by the way, my kids sweat tests numbers are 38 & 41. They both had genetic testing done and we found they both have DeltaF508 & R117H gene mutations -- positive for CF. The low sweat test numbers just indicates that the body is doing a pretty good job of doing whatever it does with the chloride.

Below is some information I copied from a website about sweat tests.

~~~~~
Sodium and chloride are part of your body?s electrolyte balance. They help regulate the fluid balance in your blood and tissues. Normally, chloride travels in and out of the body?s cells, helping to maintain electrical neutrality and water balance. Chloride?s level usually mirrors that of sodium.

When a patient has cystic fibrosis (CF), they have inherited a mutated (abnormal) pair of genes on chromosome number 7. These genes normally produce a protein (cystic fibrosis transmembrane conductance regulator (CFTR)) that serves as a channel, letting chloride out of cells and into the surrounding fluid. When a mutation is present, the CFTR protein may not work properly or be totally absent. Since CFTR levels are usually highest in the cells lining the internal surfaces of the pancreas, sweat glands, salivary glands, intestine, and reproductive organs, these are the areas most affected by CF.

~~~~~

 

[southbound]

hey sean -- i think it was the oprah book club mention.. in "a million little pieces," the word sex appears two times.. must be the inappropriate factor on these boards..glad to see someone else out there with sense of humor.. jesus (i have a feeling i'll get flamed for using that word, too)

 

[Lilith]

I think its great that someone on here has an awesome, somewhat demented sense of humor. Keeps things interesting, and admit it, it keeps you coming back for more just to see what kind of crazy stuff Sean will come up with next! *lol*

And Lauren, a big welcome to the site!!

 

[JazzysMom]

Sex is not off limits.....most of us adult engage in it. I am far from a prude (just ask my hubby), but considering that Sean was just introducing himself to at least one person that he posted to....I thought it a bit much to do the thong thing. He didnt know her & personally I dont like a man in a thong....leaves nothing to the imagination! We arent uptight people on here. We just feel a little more discretion (sp) is needed when wanting to joke with a sexual flare to it!

 

[Diane]

Welcome Lauren !! <img src="i/expressions/face-icon-small-smile.gif" border="0"> we have a fun bunch here on this site..........enjoy!!

 

[anonymous]

Hi, I am new to the site as well. What a great site and very informative.

I am 26 year old female with CF and have incurred my first major lung infection, well what I consider major. I have grown pseudomonas for 4 years and have been able to treat the minor infections with Cipro until a month ago. I started my first round of IV antibiotics, Ceptaz and Tobi, a week ago and couldn't believe within 3 days how incredibly different and better I felt. I have another week to go and almost feel back to my normal self. My lung functions on the other hand weren't well at all at the time, 53%, considering I was at or above 100% when I would go in for my anual visit to the CF clinic. I hope with these treatments and getting back into the gym I can get them back up to what they were. Any suggestions for increasing lung volumes while I am unable to work out? I go for walks everyday and try to do hills to get my huffing and puffing but am interested in hearing other methods. I also lost a ton of weight while being sick and couldn't believe how quickly it came off, 13lbs in 3 1/2 weeks. I have gained 4.5lbs in 2 1/2 weeks and continue to eat between 2500-3000 calories a day as suggested by the dietician.

Background: Diagnosed with mild CF at 4 months through a sweat test, I would consider myself healthy most of my life (ran a 1/2 marathon a year ago) and came to this site for education when I started my treatment a week ago. Common gene: Delta F508 and an unidentifiable as my second. I have been genotyped so many times and still the docs have been unable to identify my other gene.

 

[LouLou]

Hi! I'm sure we have a lot in common. Feel free to ask me questions. In terms of suggestions for what to do while you are on med's or not. I suggest regular exercise (realize while you are on those harsh antibiotics that you are in a weakened state so don't push yourself too much until after meds) BTW, I became alergic to Ceptaz my second time using it. I haven't been on IV since 2000 so I'm not sure what they are going to use in it's place. Next, read up on Oil of Oregano on this site. I think it's going to work wonders but am just getting started with it next week. Remember the importance of the human touch. Massage, manual therapy or just even an hand on your back. My husband and I do imagery while he strokes my back and I think this is very helpful. I also get professional massages and chiropractic adjustments. After all, all that coughing we do knocks things out of alignment. Do your treatments religiously. Learn to huff cough - this improves lung volume and you can do it from bed. Rest a lot! Eat what ever you wish even if it is empty calories while you are sick because you just want to gain that weight back (of course make sure you are eating enough healthy food as well). One thing I love that packs on the calories is a jello dessert - sounds and look nasty but give it a try. Green jello w/ cottage cheese and pinapple chunks. You can sub some of the juice in the can for water in the jello. It's a great snack for inbetween meals. Hope this helps! You'll be fine. The body is amazing how it springs back.

 

[smoothdave]

hey lauren hope to speak to u some time! this is s gr8 site full of gr8 ppl!
dave

 

[bgchastain]

Hi Lauren! Welcome!
I've only been on the site for a month or so now, but you wouldn't believe the amount of stuff I've learned!! It's always nice to know there are people out there that know what the heck your talking about. Hope this site helps you as much as it has me.
Just wondering where you got your screen name? Only reason I ask is because me middle name in Louella (please no jokes<img src="i/expressions/face-icon-small-smile.gif" border="0"> and they called me Lou Lou in elementary school...wow, flashback! Anyways just curious and look forward to talking to you.

 

[LouLou]

LouLou was my chilldhood nickname as well! How's your health - what's your story Bonnie?