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Posted 7/8/2006 5:57 AM (GMT 0)
Hi everyone! I am 21 years old with Cystic Fibrosis. I was diagnosed with Cystic Fibrosis when I was born. Just recently I was diagnosed with borderline diabetes, so basically I just watch what I eat for the most part. Also, a year ago I was diagnosed with sinisitus. As I am getting older I seem to be having more problems and I wanted feedback on what everyone is doing to stay healthy. Also, do you feel that zithromax works? Does anyone know of any other medicines besides the Tobi inhalation and the Cipro that helps with pseudomonas? Does anyone take any holistic drugs such as herbal teas to help with preventing a lot of mucus buildup? Is anyone in college? Do you find that when you work, it causes you to become sick? Medicines and treatments that I am on:

-6 enzymes with meals and 5 with snacks

-my vest at least an hour and 20 min. a day(it definitely helps to get the goodies up) :)

-Tobi a month on and a month off

-Pulmozyme

-ADEKS(multivitamin)

-Saline Solution(for my sinuses)

-Flonase

-Sodium Chloride inhalation

Yes, sometimes I feel like a walking pharmacy.

I hope everyone is doing well! Look forward to hearing from you guys! I know I asked a lot of questions...if anyone has any for me feel free to ask. :)

~Jen

 

Posted 7/8/2006 4:45 PM (GMT 0)
Hi Jen. Welcome to the site. I'm 24 with CF - diagnosed with CFRD at 14. In regards to treatment for Pseudo other then Cipro or inhalled TOBI, there is also Colistin (otherwise known as Colymycin). You inhale this as well. I know of some CFers who do this much like TOBI - one month on, one month off, or they alternate with TOBI. I've done Colistin a few times, but its very harsh on my lungs, so I just stick to TOBI. The one great thing about Colistin, is that you cannot become resistant to it. I also take Zithro 3x a week, but I've only been on it for a few months and haven't gotten my PFTs done yet to find out if its working. I'm doing PFTs next week though, so I should know then. As for herbs and such, I have a Respiratory tea that I drink called Gypsy Cold Care. I do notice a different drinking it. I also take Oil of Oregano tablets 2x a day (Oil of Oregano is a known combator of Pseudo, and is an anti-inflammatory), and take garlic pills as well. At one point I was eating one whole garlic clove a day and noticed that I was coughing out a lot more junk then usual, but it caused my hemoptysis to act up (garlic is a blood thinner).

I too am on 5 enzymes per meal, TOBI one month off, one on, I'm starting Pulmozyme next month, I also have GERD (acid reflux disease), so I'm on meds for that, I take the Zithro 3x a week, I do physio 2x a day, and am on Salbutamol and Symbicort, as well as ADEKs.
Posted 7/9/2006 12:26 AM (GMT 0)
Hey Chaser. Thanks for replying back to me. Everything that you mentioned really helps. Do you get the Gypsy Cold Care and the Oil of Oregano at a healthfood store? When you start the Pulmozyme next month, I think you will like it. Pulmozyme is great, it helps to thin the mucus. Another inhalation that helps with the goodies is 3% Sodium Chloride Solution. I started it a month ago and I love it. It is a new therapy that you would use in your nebulizer and it feels like a really good wash out. It definitely clears me out. Sodium Chloride is not an antibiotic so it won't lower your immune system and you can't become resistant to it. So thats a plus. Good luck on your PFT's! Let me know how it goes. I have a doctors appointment on Tuesday, so we will see how that goes. I am going to get an x-ray and possibly PFT's. I want to see what is going on in my lungs. about 6 months ago the doctors found out that I had allergic bronchopulmonary aspergillas, it is common in asthma patients and CF patients. Basically I was allergic to what was growing in my lungs. I think that I had got it because I was living in a college apartment. Because of the hurricanes that hit Florida there were still mold and fungus in the windows and such which was pretty nasty. Has anyone else been told that they have allergic bronchopulmonary aspergillas? My PFT's lately have been at 79 which I'm not too fond of. I'm hoping that I can get up in the 90's again. Maybe with the help of the garlic, oregano and oil tablets, and the tea. And I should get my butt to the gym, exercise they say cures all. :) I've gotten to the point where I'll try anything. I'll ttyl!
~Jen
Posted 7/9/2006 1:19 AM (GMT 0)
You're talking about Hypertonic Saline right? I've mentioned it to my doc and he's against it for whatever reason. He keeps saying that its not approved by the Canadian CF foundation, but I know it is. People in Ontario are doing it. The Gypsy Cold Care tea, garlic pills and oil of oregano tablets you can get from a healthfood store. I recommend getting the P73 tablets of oregano. Its the strongest. And I've noticed that it does help with my inflammation. As for aspergillus - I do grow that in my lungs, but I'm not allergic to it yet. I got tested for it a few months back to see if I was allergic and I'm not, but I do grow it. Aspergillus is common for CFers to grow. The problem arises when you are allergic to it. Steroids will help with that. Here's a link:

http://www.aspergillus.org.uk/patients/articles/whatisaspergillus.shtml

I bet once you've been treated for the Aspergillus, that your PFTs will go up. Aspergillus is notorious for causing inflammation in the lungs. At the moment my PFTs are sitting at 69%, but I'm hoping that with the Zithro, TOBI, oregano and garlic, plus the fact that I've just joined a gym and am working out like crazy that my numbers will go up. Like you I'm not happy with my numbers, and will try anything. Let me know if you've heard of any other things that may help.

By the way, do you know what mutation you have? I'm double delta f508. Its pretty common.
Posted 7/9/2006 1:50 AM (GMT 0)
Wow I did not know that the hypertonic Saline solution was not approved by the Canadian CF foundation. I wonder why? There are no side affects and it works great. Do you live in Canada? I am sure with consistancy and doing what your doing you will see an improvement with your PFT's. I'll cross my fingers for you :). Its like a test everytime they say in the 70's its a C...its frustrating to me. Also my allergies and asthma play a role in my PFT numbers. I have a lot of inflammation in my lungs due to having asthma and allergies as well. I am allergic to florida lol. Mainly oak trees, pollen, dust, mold. And then I think that I need to push myself more because I don't want my lung capacity to drop. Did you go to college? Or do you work? Have you had thrush on your tongue? If so, what is your method of getting rid of it. I know it has to do with CFRD and some medicines can cause thrush. My doctor had told me that it is bad to use listerine because it not only kills the bad germs but also the good ones too that fight off the bad ones. I usually get rid of it by using diflucan but I was wondering if you have used anything else to get rid of it. I am not sure exactly which mutation I have but I will be sure to ask on Tuesday. Another method that works is the vest. I dont know if you use it but when you increase the pressure, which is the middle button of the machine, it helps get up mucus in the lower airways. For traveling purposes it is a little bulky though to be honest and annoying to lug around. But, overall it does a good job and I huff while I am doing it, to help push the goodies out.
Posted 7/9/2006 3:37 AM (GMT 0)
Thrush is usually caused by inhaled meds. If you're taking a puffer or any kind of inhaler, gargle with water and salt, and then drink a glass of water afterwards. This will get rid of thrush.

We also don't have the vest here in Canada either. We have to order it from the states and it costs $12,000. If you want a lot more info on CF, I do know of a forum from the CF foundation website. They are wonderful there. Here is a link:

http://www.cysticfibrosis.com/

They also have a great forum with a wealth of information!
Posted 7/13/2006 3:43 PM (GMT 0)
Hi vestgirl! I just read your info and it sounds like we have a lot in common. I am a 20 year old (girl) with CF. I am on Zithromax and I am not sure how effective it is. I have been on it for about six months, but I haven't noticed any physical results that I feel. There could be things happening inside that I'm not aware of yet! I have been on TOBI for six years probably, and next month I am switching to Colistin. There's no reason, really, except that I mentioned that the TOBI makes me hoarse when I begin it and tastes bad. I am also in college. I don't necessarily find that working makes me sick, but getting stressed out does. Being too busy results in me getting less sleep, which results in a lower immune system, which results in antibiotics! I don't think that it's work specifically that affects me, but it's being too stressed out or busy. I also take enzymes, multivitamins, Pulmozyme, TOBI (but I'm switching!), Hypertonic Saline (7%), and am supposed to do the vest. I don't take any sinus medications (althought I probably should) because I got sinus surgery two years ago and have no signs of polyps forming. The medications that I am on that you did not mention taking are Caltrate, Singulair, and Advair. I have been exercising instead of the vest a lot lately, but I need to get in the habit of doing the vest. Exercising has definitely made me feel significantly better in every respect. My FEV1 is up 15 percent and my smaller airways are up 30 percent since February. I have been exercising regularly since my appointment in February, so I feel that it is one of the best therapies you can do. Post back on here if you'd like or feel free to e-mail me at [email protected]. Great to meet you! :0)

Drew
Posted 7/18/2006 9:29 PM (GMT 0)
hi im Andrew im 19/m i'll be 20 in 3 months i have cf and diabeties sorry cant spell im new so sorry if im sounding stupid i've had this since i was just a baby hard and good times with cf i graduate 2005 thank goodness i was happy im not doing much now just trying to enjoy life after getting out of school but i still havent rest much i have to go in the hospital every 2 to 3 months so that sucks excuse my lanuge but im gonna go email me someone lets talk about our illness ok heres my email [email protected]
Posted 7/18/2006 9:29 PM (GMT 0)
hi im Andrew im 19/m i'll be 20 in 3 months i have cf and diabeties sorry cant spell im new so sorry if im sounding stupid i've had this since i was just a baby hard and good times with cf i graduate 2005 thank goodness i was happy im not doing much now just trying to enjoy life after getting out of school but i still havent rest much i have to go in the hospital every 2 to 3 months so that sucks excuse my lanuge but im gonna go email me someone lets talk about our illness ok heres my email [email protected]
Posted 7/19/2006 1:10 PM (GMT 0)

Hello Andrew and welcome to HW!  Congrats on graduating!

Hope your summer is going great!

Posted 7/19/2006 1:15 PM (GMT 0)

Jen, sounds like you are very busy being "superwoman".  I agree with mom, you were doing too much.

Glad to see you are taking it easy and getting better, and welcome to HW! :-)

Posted 7/26/2006 2:03 AM (GMT 0)
hello, im wondering what is this 'vest' thing you speak of, I really am lazy and not in the mood to read all those posts.. I hope its an easy solution to expelling mucus!
Posted 8/3/2006 11:34 PM (GMT 0)
Jen,
Hey this is Erica. I don't have CF but my cousin Brandi did. I am 22years old and a big advocate for CF. I would love to talkto you and everyone else just to get to know you. I want to bring more money into the foundation for research. I read all of your letters and I remember what Brandi went through with her meds.
Thanks
Erica
[email protected]
Posted 8/8/2006 1:59 AM (GMT 0)

Hi vestgirl!  I have a daughter with CF and she has been amazingly healthy up to this point (5 years old).  I am an extremely firm believer in creating a healthy environment within your home - you would be amazed as to how the EPA has recognized how the pollution inside our home are anywhere between 3 and 70 times greater than that of outdoor air pollution.  Given that, patients with CF, asthma and other lung conditions/problems need to be aware of how to take care of that.  We have great ideas for you which you can get a hold of my wife or I at [email protected].

Posted 8/15/2006 3:57 AM (GMT 0)
Hi vestgirl, I am a 20 year old with cf also. I start zithromax maybe 6months ago, I notices a difference with my sinuses, but its hard to tell what else it is helping with because I am on so many other things too. I am doing the hyper tonic saline, my doctor is open to trying many different things as long as he knows there save. I think the saline is helping me alot it helps to thin the mucus and it dosent cause an irritation like tobi can do to me.

KAITLYN

Posted 8/24/2006 10:11 PM (GMT 0)

hey sandra it's Andrew thanks on congrats of me graduating im so happy to be out now trying to go to college but i dont know yet im pretty new so sorry about my spelling but im Andrew im 5'5 and i have dark brown hair and dark brown eyes and dimples im 19 i'll be 20 in about a month oct 5th i've had cf ever since i was a baby its a hard diseses to deal with but only god knows whats best if you would like to see my pics their on yahoo messager i'll give you my screen name if you want it but i can say one thing dont be scared about me im ugly get back and i'll give you it ok bye sandra skull sorry i love that face

imondeck said...

Hello Andrew and welcome to HW!  Congrats on graduating!

Hope your summer is going great!


Posted 8/24/2006 10:20 PM (GMT 0)
hey sandra its me i hope you go that message i have up here
Posted 8/25/2006 4:16 PM (GMT 0)

Hello Andrew.  Sounds like you are doing very well!  What colleges have you been looking at? 

You are a Libra, just like me (my bday is Oct. 16).  I would like to see your picture (I am sure you will not "scare" me) cool    How does the Yahoo messenger work?

Posted 9/6/2006 5:30 PM (GMT 0)
hey sandra its me sorry i havent been on in awhile i hope your not mad well to get on yahoo you have to download yahoo messager first then put your info in and then your id like mine is [email protected] thats mine so there is how you do it then it says add just put [email protected] ok to add me so thats pretty much it i hope to talk soon on messager peace
Posted 9/7/2006 12:56 PM (GMT 0)

Hello Andrew, hope you are feeling better.  I will check on the yahoo messenger sometime today (I don't really like down loading a lot of stuff).... I can pm you my email addy, just change your settings in your profile to accepting emails (see how my envelope lights up).

Have a wonderful day. :-)

Posted 9/10/2006 1:19 AM (GMT 0)
Hello, Derek here Im 33 I was diagonsed at age 5, do you work? what do you do?
Posted 9/26/2006 4:03 PM (GMT 0)
:-)  ...welcome....nice to meet you...
Posted 10/1/2006 5:20 AM (GMT 0)

nadabada said...
hello, im wondering what is this 'vest' thing you speak of, I really am lazy and not in the mood to read all those posts.. I hope its an easy solution to expelling mucus!

Hey nabadaba! The vest is exactly what it sounds like..a vest. You wear a vest, and through two tubes on either side of it, it attaches to a machine. When u turn on the machine, it fills the vest up with air (like a balloon) and starts to vibrate. It vibrates your whole upperbody, and helps to loosen up the mucus in your lungs so  you can cough it up. It's just another form of airway clearance, and a pretty heavy duty piece of equipment, I think my insurance had to pay $16,000 for it. But it can do wonders.
Posted 10/1/2006 3:44 PM (GMT 0)
Hi! I'm allianne! I was on TOBI month on month off but that wasnt working for me. Zithromax helps me alot! Im on 3-4 enzeyms but i have more problems with my lungs than belly.

Posted 10/1/2006 6:07 PM (GMT 0)
Hey! What is Zithromax?
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