SURVEY

M

MissRagdoll

New member
Sex: female
<br />Current age: 18
<br />Age in which the first symptoms were noticed: at birth
<br />Nacionality: American
<br />
<br />1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)Lungs
<br />Pancreas Yes
<br />Liver No
<br />Nostrils Yes
<br />Intestine No
<br />Sweat glands Yes
<br />Reproductive System Probably
<br />Other organs (In this case, which are them?)
<br />
<br />2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which?
<br /> Osteopenia, asthma, and sinus disease
<br />
<br />3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).
<br /> Vest with Tobi, Albuterol, Pulmozyme. Pills: Singulair, Zyrtec, Azithromycin, and Creon MT 20s.
<br />
<br />4. Have you had a transplant? Could you tell us how the experience was?
<br />No
<br />
<br />5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?
<br />Yes, when im not feeling well I dont feel up to doing much of anything but sleep. I cant go to peoples houses where they smoke, or anywhere where there may be smoke.I need to take more breaks during strenuous work.
<br />
<br />6. Are you in any kind of association against cystic fibrosis? Could you tell us which?
<br />
<br />No
 
T

theLostMiler

New member
<b>SURVEY ABOUT CYSTIC FIBROSIS AND ITS EFFECTS</b>

<b>Sex</b>: Female

<b>Current age</b>: 23

<b>Age in which the first symptoms were noticed</b>: umm 7 (2nd grade), I had a bowel obstruction. But as far as repiratory, always coughed growing up, but was dry feeling... only did treatments when sick... UNTIL puberty (10th/11th grade)

<b>Nacionality</b>: American



<b>1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)</b>

Lungs: Yes

Pancreas : Yes

Liver: No

Nostrils: I do sinus flushes, but have never needed sinus surgery

Intestine: Yes (Muconium Illeius and mulitple bowel blockages) also loss of appetite (stomach) so I have a G-tube.

Sweat glands: Yes, suppose so

Reproductive System: Unknown

Other organs (In this case, which are them?)

Heart/Veins (?): I have a port b/c of IV antibiotics on a pretty routine basis. Also, decreasing lung function puts more strain on your heart, so though no problems, I watch my heart rate a lot.


<b>2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which?</b>

I guess technically asthma, and like others have said, broncitis (spelling?). Ive also had pneumothorax issues, which isnt really a disease but still from CF.



<b>3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).</b>

Yes, 3 nebulizer/vest treatments a day (often modified based on how I feel though)

am/pm: Xopenx, Pulmozyme, TOBI OR Cayston with Invacaire Mobiliaire 50 psi compressor and HillRom Vest for 30 minutes during xopenex/pulmozyme

noon/afternoon: Xopenex, Hyper tonic saline with Invacaire Mobiliaire 50 psi compressor and HillRom Vest for 30 minutes during both aerosols

Diet: High calorie/High Protein

Routine/Mainentance Meds and Vitamins/Pills:

Symbicort puffer inhaler (160/4.5) 2 puffs/ 2x day
AquaDEK CF multivitamin 2 x day
Flax Seed Oil pill (Natures Corner?) 1000 units
Echincea 3 pills/ 2 x day
Vitamin D3 2 x day
Viactin Calcium (supposed to do) 3-4 chewables a day
Fizzy NAC (off of lately, but like to take it normally) 2 tablets (900 mg) 2 a day (PharmaNAC)
Neil Med Sinus flushes
Zen Pep 15,000 lipase unit enzymes, 2-3 with meals
Prevacid, 1-2 a day
(I think I got it all)

At night and activity: Oxygen Concentrator





<b>4. Have you had a transplant? Could you tell us how the experience was?</b>

No, but I am have been in transplant talks since 2008, and seeing "my" transplant center again in January to see what the next step is in my CF progression.




<b>5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?</b>

Yes, I consider myself "lucky" because I wasnt forced to do the daily breathing treatments until high school unless sick and was still pretty healthy w/o them. In the 8-10 years I have really been doing tretaments, and 5-6 I have been most compliant, I, like others have said, have to plan social events around treatments, or stay up later than everyone else in order to do them at night, and also get up ealier to do them before class/job etc. Now I do 3 treatments a day, so that interferes with any middle of the day activies. Vacations and Trips are a hassle b/c of how much stuff I have to bring even for just 1 or 2 nights now. My energy is now affected b/c of my bugs taking a toll on my body, so I often dont do much of anything anymore socially. I barely graduated college this month though, but hadnt been to class in a month, but saved up my energy just so I could walk.

As far as sex, yes. I have been in a 6+ year relationship with my fiance and in the beginning, I had a lot more endurance/stamina. I did it whenever, even if tired (granted it was also a newer relationship haha). Now, I am sick often and sex is often the last thing on my mind. And I cant really do much of the "work". I think about sex way in advance now too, in order to do it when I have enough energy etc. I also have a port and a g-tube which, on some days, make me feel gross just b/c you feel like a robot a bit haha, luckily my fiance looks past all that, but I miss my non-foreign object body during sexy times.



<b>6. Are you in any kind of association against cystic fibrosis? Could you tell us which?</b>


I am confused, did you really mean, "against" CF? Do you mean, fighting CF like a fundraising event etc... Just the USA's CFF.org Great Strides Walk for A Cure every year.
 
T

theLostMiler

New member
<b>SURVEY ABOUT CYSTIC FIBROSIS AND ITS EFFECTS</b>

<b>Sex</b>: Female

<b>Current age</b>: 23

<b>Age in which the first symptoms were noticed</b>: umm 7 (2nd grade), I had a bowel obstruction. But as far as repiratory, always coughed growing up, but was dry feeling... only did treatments when sick... UNTIL puberty (10th/11th grade)

<b>Nacionality</b>: American



<b>1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)</b>

Lungs: Yes

Pancreas : Yes

Liver: No

Nostrils: I do sinus flushes, but have never needed sinus surgery

Intestine: Yes (Muconium Illeius and mulitple bowel blockages) also loss of appetite (stomach) so I have a G-tube.

Sweat glands: Yes, suppose so

Reproductive System: Unknown

Other organs (In this case, which are them?)

Heart/Veins (?): I have a port b/c of IV antibiotics on a pretty routine basis. Also, decreasing lung function puts more strain on your heart, so though no problems, I watch my heart rate a lot.


<b>2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which?</b>

I guess technically asthma, and like others have said, broncitis (spelling?). Ive also had pneumothorax issues, which isnt really a disease but still from CF.



<b>3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).</b>

Yes, 3 nebulizer/vest treatments a day (often modified based on how I feel though)

am/pm: Xopenx, Pulmozyme, TOBI OR Cayston with Invacaire Mobiliaire 50 psi compressor and HillRom Vest for 30 minutes during xopenex/pulmozyme

noon/afternoon: Xopenex, Hyper tonic saline with Invacaire Mobiliaire 50 psi compressor and HillRom Vest for 30 minutes during both aerosols

Diet: High calorie/High Protein

Routine/Mainentance Meds and Vitamins/Pills:

Symbicort puffer inhaler (160/4.5) 2 puffs/ 2x day
AquaDEK CF multivitamin 2 x day
Flax Seed Oil pill (Natures Corner?) 1000 units
Echincea 3 pills/ 2 x day
Vitamin D3 2 x day
Viactin Calcium (supposed to do) 3-4 chewables a day
Fizzy NAC (off of lately, but like to take it normally) 2 tablets (900 mg) 2 a day (PharmaNAC)
Neil Med Sinus flushes
Zen Pep 15,000 lipase unit enzymes, 2-3 with meals
Prevacid, 1-2 a day
(I think I got it all)

At night and activity: Oxygen Concentrator





<b>4. Have you had a transplant? Could you tell us how the experience was?</b>

No, but I am have been in transplant talks since 2008, and seeing "my" transplant center again in January to see what the next step is in my CF progression.




<b>5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?</b>

Yes, I consider myself "lucky" because I wasnt forced to do the daily breathing treatments until high school unless sick and was still pretty healthy w/o them. In the 8-10 years I have really been doing tretaments, and 5-6 I have been most compliant, I, like others have said, have to plan social events around treatments, or stay up later than everyone else in order to do them at night, and also get up ealier to do them before class/job etc. Now I do 3 treatments a day, so that interferes with any middle of the day activies. Vacations and Trips are a hassle b/c of how much stuff I have to bring even for just 1 or 2 nights now. My energy is now affected b/c of my bugs taking a toll on my body, so I often dont do much of anything anymore socially. I barely graduated college this month though, but hadnt been to class in a month, but saved up my energy just so I could walk.

As far as sex, yes. I have been in a 6+ year relationship with my fiance and in the beginning, I had a lot more endurance/stamina. I did it whenever, even if tired (granted it was also a newer relationship haha). Now, I am sick often and sex is often the last thing on my mind. And I cant really do much of the "work". I think about sex way in advance now too, in order to do it when I have enough energy etc. I also have a port and a g-tube which, on some days, make me feel gross just b/c you feel like a robot a bit haha, luckily my fiance looks past all that, but I miss my non-foreign object body during sexy times.



<b>6. Are you in any kind of association against cystic fibrosis? Could you tell us which?</b>


I am confused, did you really mean, "against" CF? Do you mean, fighting CF like a fundraising event etc... Just the USA's CFF.org Great Strides Walk for A Cure every year.
 
T

theLostMiler

New member
<b>SURVEY ABOUT CYSTIC FIBROSIS AND ITS EFFECTS</b>
<br />
<br /><b>Sex</b>: Female
<br />
<br /><b>Current age</b>: 23
<br />
<br /><b>Age in which the first symptoms were noticed</b>: umm 7 (2nd grade), I had a bowel obstruction. But as far as repiratory, always coughed growing up, but was dry feeling... only did treatments when sick... UNTIL puberty (10th/11th grade)
<br />
<br /><b>Nacionality</b>: American
<br />
<br />
<br />
<br /><b>1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)</b>
<br />
<br />Lungs: Yes
<br />
<br />Pancreas : Yes
<br />
<br />Liver: No
<br />
<br />Nostrils: I do sinus flushes, but have never needed sinus surgery
<br />
<br />Intestine: Yes (Muconium Illeius and mulitple bowel blockages) also loss of appetite (stomach) so I have a G-tube.
<br />
<br />Sweat glands: Yes, suppose so
<br />
<br />Reproductive System: Unknown
<br />
<br />Other organs (In this case, which are them?)
<br />
<br />Heart/Veins (?): I have a port b/c of IV antibiotics on a pretty routine basis. Also, decreasing lung function puts more strain on your heart, so though no problems, I watch my heart rate a lot.
<br />
<br />
<br /><b>2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which?</b>
<br />
<br />I guess technically asthma, and like others have said, broncitis (spelling?). Ive also had pneumothorax issues, which isnt really a disease but still from CF.
<br />
<br />
<br />
<br /><b>3. Do you follow any kind of treatment? Could you tell us wich or why? (pills, diets, machines,... and its brand).</b>
<br />
<br />Yes, 3 nebulizer/vest treatments a day (often modified based on how I feel though)
<br />
<br />am/pm: Xopenx, Pulmozyme, TOBI OR Cayston with Invacaire Mobiliaire 50 psi compressor and HillRom Vest for 30 minutes during xopenex/pulmozyme
<br />
<br />noon/afternoon: Xopenex, Hyper tonic saline with Invacaire Mobiliaire 50 psi compressor and HillRom Vest for 30 minutes during both aerosols
<br />
<br />Diet: High calorie/High Protein
<br />
<br />Routine/Mainentance Meds and Vitamins/Pills:
<br />
<br /> Symbicort puffer inhaler (160/4.5) 2 puffs/ 2x day
<br /> AquaDEK CF multivitamin 2 x day
<br /> Flax Seed Oil pill (Natures Corner?) 1000 units
<br /> Echincea 3 pills/ 2 x day
<br /> Vitamin D3 2 x day
<br /> Viactin Calcium (supposed to do) 3-4 chewables a day
<br /> Fizzy NAC (off of lately, but like to take it normally) 2 tablets (900 mg) 2 a day (PharmaNAC)
<br /> Neil Med Sinus flushes
<br /> Zen Pep 15,000 lipase unit enzymes, 2-3 with meals
<br /> Prevacid, 1-2 a day
<br />(I think I got it all)
<br />
<br />At night and activity: Oxygen Concentrator
<br />
<br />
<br />
<br />
<br />
<br /><b>4. Have you had a transplant? Could you tell us how the experience was?</b>
<br />
<br />No, but I am have been in transplant talks since 2008, and seeing "my" transplant center again in January to see what the next step is in my CF progression.
<br />
<br />
<br />
<br />
<br /><b>5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?</b>
<br />
<br />Yes, I consider myself "lucky" because I wasnt forced to do the daily breathing treatments until high school unless sick and was still pretty healthy w/o them. In the 8-10 years I have really been doing tretaments, and 5-6 I have been most compliant, I, like others have said, have to plan social events around treatments, or stay up later than everyone else in order to do them at night, and also get up ealier to do them before class/job etc. Now I do 3 treatments a day, so that interferes with any middle of the day activies. Vacations and Trips are a hassle b/c of how much stuff I have to bring even for just 1 or 2 nights now. My energy is now affected b/c of my bugs taking a toll on my body, so I often dont do much of anything anymore socially. I barely graduated college this month though, but hadnt been to class in a month, but saved up my energy just so I could walk.
<br />
<br />As far as sex, yes. I have been in a 6+ year relationship with my fiance and in the beginning, I had a lot more endurance/stamina. I did it whenever, even if tired (granted it was also a newer relationship haha). Now, I am sick often and sex is often the last thing on my mind. And I cant really do much of the "work". I think about sex way in advance now too, in order to do it when I have enough energy etc. I also have a port and a g-tube which, on some days, make me feel gross just b/c you feel like a robot a bit haha, luckily my fiance looks past all that, but I miss my non-foreign object body during sexy times.
<br />
<br />
<br />
<br /><b>6. Are you in any kind of association against cystic fibrosis? Could you tell us which?</b>
<br />
<br />
<br />I am confused, did you really mean, "against" CF? Do you mean, fighting CF like a fundraising event etc... Just the USA's CFF.org Great Strides Walk for A Cure every year.
 
J

Joblazer86

New member
Sex: M
Current age: 27
Age in which the first symptoms were noticed: Was diagnosed at 6 weeks b/c older brother had it

Nationality: USA

1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)
Lungs YES
Pancreas YES
Liver NO
Nostrils NO
Intestine YES
Sweat glands YES
Reproductive System DUNNO
Other organs (In this case, which are them?)

2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which?

CFRD, Kidney stones and Osteoporosis

3. Do you follow any kind of treatment? Could you tell us which or why? (pills, diets, machines,... and its brand).

Prograf
Cellcept
Vitamin D
Prednisone
Fosomax
Protonix
Valcyte
Bactrium
Zithromax
Vitamin C
Magnesium
Acidophilous
Vitamins ADEK
Ultrase MT20 (Zenpep when I run out)
Itraconozole
Norvasc

4. Have you had a transplant? Could you tell us how the experience was?

Yes, It was the best decision I have ever made. Did not know how rewarding it would be to breathe normally!

5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?

Yes, Like others have said I do not go to smokey places. Other than that havent affected me any other way before and after transplant

6. Are you in any kind of association against cystic fibrosis? Could you tell us which?

Naw not yet, lol
 
J

Joblazer86

New member
Sex: M
Current age: 27
Age in which the first symptoms were noticed: Was diagnosed at 6 weeks b/c older brother had it

Nationality: USA

1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)
Lungs YES
Pancreas YES
Liver NO
Nostrils NO
Intestine YES
Sweat glands YES
Reproductive System DUNNO
Other organs (In this case, which are them?)

2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which?

CFRD, Kidney stones and Osteoporosis

3. Do you follow any kind of treatment? Could you tell us which or why? (pills, diets, machines,... and its brand).

Prograf
Cellcept
Vitamin D
Prednisone
Fosomax
Protonix
Valcyte
Bactrium
Zithromax
Vitamin C
Magnesium
Acidophilous
Vitamins ADEK
Ultrase MT20 (Zenpep when I run out)
Itraconozole
Norvasc

4. Have you had a transplant? Could you tell us how the experience was?

Yes, It was the best decision I have ever made. Did not know how rewarding it would be to breathe normally!

5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?

Yes, Like others have said I do not go to smokey places. Other than that havent affected me any other way before and after transplant

6. Are you in any kind of association against cystic fibrosis? Could you tell us which?

Naw not yet, lol
 
J

Joblazer86

New member
Sex: M
<br />Current age: 27
<br />Age in which the first symptoms were noticed: Was diagnosed at 6 weeks b/c older brother had it
<br />
<br />Nationality: USA
<br />
<br />1. In what organs of the body do you suffer from cystic Fibrosis? (Write "Yes" or "no" near the word)
<br />Lungs YES
<br />Pancreas YES
<br />Liver NO
<br />Nostrils NO
<br />Intestine YES
<br />Sweat glands YES
<br />Reproductive System DUNNO
<br />Other organs (In this case, which are them?)
<br />
<br />2. Do you suffer from another disease as a result of Cystic Fibrosis? If the answer is yes, could you tell me which?
<br />
<br />CFRD, Kidney stones and Osteoporosis
<br />
<br />3. Do you follow any kind of treatment? Could you tell us which or why? (pills, diets, machines,... and its brand).
<br />
<br />Prograf
<br />Cellcept
<br />Vitamin D
<br />Prednisone
<br />Fosomax
<br />Protonix
<br />Valcyte
<br />Bactrium
<br />Zithromax
<br />Vitamin C
<br />Magnesium
<br />Acidophilous
<br />Vitamins ADEK
<br />Ultrase MT20 (Zenpep when I run out)
<br />Itraconozole
<br />Norvasc
<br />
<br />4. Have you had a transplant? Could you tell us how the experience was?
<br />
<br />Yes, It was the best decision I have ever made. Did not know how rewarding it would be to breathe normally!
<br />
<br />5. Do you think Cystic Fibrosis has affected your social and sexual life? Could you tell us how?
<br />
<br />Yes, Like others have said I do not go to smokey places. Other than that havent affected me any other way before and after transplant
<br />
<br />6. Are you in any kind of association against cystic fibrosis? Could you tell us which?
<br />
<br />Naw not yet, lol
 
S

SilviaB

Guest
Thanks for all your answers!
Merry xmas! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
S

SilviaB

Guest
Thanks for all your answers!
Merry xmas! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
S

SilviaB

Guest
Thanks for all your answers!
<br />Merry xmas! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
S

SilviaB

Guest
These are the last days to give my project to the teacher so if someone else can answer my survey I'll be really grateful. I don't have many surveys and I need some more.

Thank you!
 
S

SilviaB

Guest
These are the last days to give my project to the teacher so if someone else can answer my survey I'll be really grateful. I don't have many surveys and I need some more.

Thank you!
 
S

SilviaB

Guest
These are the last days to give my project to the teacher so if someone else can answer my survey I'll be really grateful. I don't have many surveys and I need some more.
<br />
<br />Thank you!
 
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