New, Like to talk to people

  • Thread starter Natasha Grandall
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Natasha Grandall

Guest
Hi, My name is Natasha, I'm 18 years old. I joined this site to talk to people who are going threw the same thing as me. I'd really like to get to know as much people as possible. I live in Florida (Orlando area). I am engaged and very happy. Please add me and talk to me i have lot of questions and need help! Thanks guys!
 

Jane

Digital opinion leader
Hi Natasha! Welcome and Congratulations on your engagement! I have two sons w/cf, 22 and 18. What questions do you have?
 

scanboyd

Member
Hello young lady, congratulations on your engagement. Do not know if I can answer your questions but fire away.
Take care and enjoy life!!
 
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welshwitch

Guest
Welcome! I have been on this site since 2005 -- wow that's a long time :) I've made many internet "friends" and it's helped me a lot with grappling with the emotional and physical demands of this disease. Hope we can help you with any issues/questions that you have.
 
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Natasha Grandall

Guest
Thank guys:) I was just wondering if any one else is taking Albuteral, if it makes you shake? If so, do you know of any ways to make it stop or reduce it, I just feel like I'm on crack or something. I usually take a nap. I recently lost weight. Out of no where, I went from 105 to about 92 now. It's been about 2 months and I'm not gaining it back. Is there any techniques to gain weight back. I eat like a cow, and my weight isn't going anywhere. Also, I take digestive pills (creaon) and they don't help. Once I got out of the hospital I promise my family I would take my pills. After 2 week I stopped because I lost some wight, I looked sick, I wasn't feeling like my self, I wasn't eating as much, I didn't see the point of taking digestive pills if they made me feel like this and wasn't eating. Can anyone suggest a pill they use that works, maybe I can talk about it with my doctor? I appreciate every answer or reply I get back. The littlest thing could help. Thanks again everyone I really appreciate it! :)
 

Jellybaby

New member
Heya I take albuterol...and sometime if I take to much it makes my heart beat faster and makes me shake...this normally means your taking to much so if you can cope with taking a smaller dose it may help :)
Do you take any high calories milkshakes or anything? I take one called calshake and it's good and comes in lots of different flavours! Also maybe if your losing weight so quickly for no reason it might be good to get a glucose test to check for cf related diabetes? It mightn't be that at all but it's always good to check these things! Hope this helps a little x
 
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welshwitch

Guest
How much Creon are you taking ? Sometimes you need to increase the dosage. When I was younger I would take like 3 or 4 per meal and now it's more like 8 or 9. Also, can you try switching to a different enzyme? Others on this site have found more success with other brands. Have you discussed this with your doc? Keeping weight on is one of the keys to success with CF. What's your diet like? High protein, high calorie food? Please don't stop taking your pills, they are so necessary for digesting and processing food!

Other things to consider: how is your respiratory health? I have found that when I have a lung issue or infection, I lose weight. The amount of energy your body needs to fight off a lung issue is enormous. When lungs are happy = weight is happy.
 
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Natasha Grandall

Guest
Jellybelly, I have tried taking half of the recommended amount of alburteral, but I still shake. I have had to take Boots, the chocolate drink, when I was a kid but I don't anymore because I was gaining weight. I haven't tried high calorie milkshakes yet. I eat mcdonalds and fried food as much as I can, I put salt on everything, I eat ice cream 1-2 times a day with chocolate syrup. I don't know what else I can do!!! I got tested for diabetes last year and it came back negative, I have to take another glucose test in December.

Welshwitch, I am suppose to be taking 4 Creon with meals and 3 with snacks. I have told my dietitian that they don't help, they make me feeel sick, and she just said that I have to keep taking them. My diet is phenomenal. I'm on the 'See food diet:)' (I see food, I eat it!) I eat anything I want when I want and however much I want. Salt is a must! Fat is a must! A couple weeks ago my Doctor called me and said my sputem culture came back positive for psuedomonas:/ It might just be that I'm getting sick.
 

Jellybaby

New member
Maybe this would work because I take my creon differently and have no problems....I take them
Depending on how many grams of fat are in the food. I take one creon for every 3 grams of fat (sounds complicated but it's not really :p) so for example if I had a chocolate bar that had 9grams of fat I would take 3 creon capsules.
For something that has 12.5 grams of fat I would take 4 or 5 do you get it? That way I'm getting the right amount of creon! and for things that don't tell you how many grams of fat are in it you basically have to guess which is annoying and u can sometimes get that wrong but most foods have it written on the packaging :)
 
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Natasha Grandall

Guest
That sounds really helpful! Ill try it and let you know. Can I add you on here so if it does work I can tell you? I get how it works, it might get complicated but I can work it out, I'm good at math. Thanks for the help. If you have anything else please please please let me know!
 

Beccamom

New member
I take albuterol too and yes I get shaky. My daughter switched from Albuterol to Xopenex and she doesn't get shaky or the fast heart rate. Xopenex comes in an I abler and nebulizer form and can be used before hypersal nebs to prevent bronchi spasm or for quick relief during an asthma attack like albuterol. Maybe ask your doctor about that. Welcome. The support I've gotten in this forum helps to keep me sane.
 
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Natasha Grandall

Guest
I will defffinately have to ask about it. I'm hoping that this site will ansswer questions and support me because sometimes my family doesnt get what im going threw. So far so good! Thanks!
 

azdesertrat

New member
Hi Natasha! Welcome to the website. When I started participating on this site, it was the first time I'd ever associated with others with CF. I've enjoyed the contacts, quite a lot!
I use a Xopanex inhaler, & I used Albuterol via SVN before I had my transplant. Yea, both these meds make me shake horribly. It drives me nuts.
As far as an enzyme- digestive pill- that works, I've been on Pancreaze MT-16 & MT-10 for quite awhile. They work great. Maybe you should ask your CF doctor if that's an option for you. I take them every time I eat a meal. There's lots of snacks I eat that I don't have to take an enzyme for. Anyway, I sure hope this helps. Congratulations on your engagement. Hope to see you active on the website, take care, 'Pat'.
 

SMMC

New member
Enzymes, Albuterol & Xopenex

Hello Natasha,
Welcome and congratulations on your engagement!! What an exciting time in your life!!!


I'm an adult with CF, 3 teenage kids (adopted) and a great hubby. :) I read about your problems with the Creon. I do understand how tough it can be to figure out the right dosage etc. If you have CF GI issues (like many of us do) it is probably better to figure out the right does and type of enzymes for you. :) When we have CF GI issues and don't take any enzymes our bodies can not digest the food properly. We can become very malnourished. If we are malnourished then our bodies can not help us fight off infections very easily. Then we tend to get sicker more often. Hopefully the dietician at your CF clinic can help you figure out the right enzyme dosage and kind for you. :D

I used Albuterol for years, eventually I had to stop it because it was increasing my heart rate too much. When I got the shakes from it, they were temporary. I guess I just dealt with it because I knew I needed the Albuterol to breathe. Now I use Xopenex, it is similar to albuterol, the shakes from it are not as severe as they are from Albuterol..for me at least. Xopenex comes in many different strengths for the nebulizer and it also comes in a little inhaler that you can carry with you.
Maybe you could try it and see if it helps you shake less?

I hope these bits of info might help you. Hang in there!!!


 
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Natasha Grandall

Guest
Thanks guys:) It really helps. I have a lot of questions for my doctor now! As for my enzymes, I know I'm suppose to take them and they help me gut the nutrients I need, however, it makes me feel sick and I lost a lot of weight when I started talking them. I'm not sure that's what they are suppose to do. I don't want to take a med that makes me lose weight. I have weight problems already. I keep talking to my dietition about how much i eat and that i don't take my meds because they don't do any good and she kind of just ignores it and tells me i have to take them instead of talking about a new dosage or a new med. I have another question. I just started taking my Cayston again November 1st. Today (November 4th) I stared feeling nauseous. My fiance said he might have heard something about 'If you don't eat enough between Cayston's that it can make you feel nauseas.' I'm not sure if this is completely true but if someone can tell me if it is or not or have had any problems with that sound similar. I take Albuteral, Pulmozyme, Cayston, and Azithromycin (anitbiotic).
 
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