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Life
- Thread starter anonymous
- Start date
it affects the lungs, digestive system, reproduction in males and some females have difficutly becoming pregnant because of the thick mucous (it kind of traps the sperm and prevents it from traveling in a CF female). Exaserbations can land a Cfer in the hospital on IV antibiotics. Most CFers are using nebulizers for their medications. It didn't start in our family till about 21, but most children now use the. The common CF medications are nebulized tobramyacin (TOBI) which is a very effective antibiotic. There is DNase, also known as pulmozyme that opens up the airways for CFers and is recommended to be used BEFORE any antibiotics as they can be better absorbed after it's use. There is also a medication called colistin that is suppose to be an IM injection but can also be used in a nebulizer. Then there is the Chest pt, some people do it manually. You have the person lie in different positions face down (hanging off the side of a bed, chair, couch...) and "clap" their back. Now there is a chest PT vest that pretty much does that, but it costs $15000 and many insurance companies don't cover it.
Those with CF, most anyways, have to take digestive enzymes when they eat because their body lacks the natural enzymes to break down food. some take as few as 2-3 with each meal and snack and some take as much as 15-30 per meal and snack. Acid reflux affects many cfers as well so they usually take something like prevacid or zantac to help relive that. A lot of times there is also the use of a constant inhaler.
Reproduction is affected in males because 99.5% of males with Cf don't have a vas defrens. That is the tube that carries the sperm from the testicles to ejaculation. Although this does NOT mean that they don't produce sperm. With the advance in technologies lately they can do a sperm retrieval method that takes the sperm directly from the tesitcles and can be used in an in-vetro procedure. A common and simple solution for females with CF that are having trouble getting pregnant is robitussin, but not the kind that reduces a cough, you need the kind with guiafsen (sp?) that thins out mucous. Because it thins out the mucous in the reproductive tract of the female and allows the sperm to travel effectively. There are also other options, but that is the most cost effective method to attempt first and it doesnt even require a trip to the doctor.
At some point in a CFers lifetime, they will need a lung transplant (and possibly a liver and pancreas and sometimes kindey transplant). The time and type of transplant varies for everybody, some people need them at 16, some 18 and some make it in to their 40's before one in necessary. There is a rigid and about 3-4 day screening process before one can be put on the transplant list. And the truth is that some CFers die before a match becomes avilable for them. Others choose not to have a transplant and will die sooner than not as a result of that.
Many Cfers (especially closer to the transplant time, or needing a transplant) will be on oxygen. Usually it starts where the person is on just in the evenings when they sleep, but overtime it becomes a necessary part of everyday life.
Thats about all that is coming to me right now, good luck and do some internet research as well that can answer some generalized questions about CF
Julie
Those with CF, most anyways, have to take digestive enzymes when they eat because their body lacks the natural enzymes to break down food. some take as few as 2-3 with each meal and snack and some take as much as 15-30 per meal and snack. Acid reflux affects many cfers as well so they usually take something like prevacid or zantac to help relive that. A lot of times there is also the use of a constant inhaler.
Reproduction is affected in males because 99.5% of males with Cf don't have a vas defrens. That is the tube that carries the sperm from the testicles to ejaculation. Although this does NOT mean that they don't produce sperm. With the advance in technologies lately they can do a sperm retrieval method that takes the sperm directly from the tesitcles and can be used in an in-vetro procedure. A common and simple solution for females with CF that are having trouble getting pregnant is robitussin, but not the kind that reduces a cough, you need the kind with guiafsen (sp?) that thins out mucous. Because it thins out the mucous in the reproductive tract of the female and allows the sperm to travel effectively. There are also other options, but that is the most cost effective method to attempt first and it doesnt even require a trip to the doctor.
At some point in a CFers lifetime, they will need a lung transplant (and possibly a liver and pancreas and sometimes kindey transplant). The time and type of transplant varies for everybody, some people need them at 16, some 18 and some make it in to their 40's before one in necessary. There is a rigid and about 3-4 day screening process before one can be put on the transplant list. And the truth is that some CFers die before a match becomes avilable for them. Others choose not to have a transplant and will die sooner than not as a result of that.
Many Cfers (especially closer to the transplant time, or needing a transplant) will be on oxygen. Usually it starts where the person is on just in the evenings when they sleep, but overtime it becomes a necessary part of everyday life.
Thats about all that is coming to me right now, good luck and do some internet research as well that can answer some generalized questions about CF
Julie
Maria,
I think a major mistake that people make about Cf and people with CF is the disease itself. Meaning that most non-cf people want o know about the disease. I think (after having the disease) it would be better to learn about CF life. Not the management of CF, nor the complications but the life and little things that make the people with CF. Caring, Giving, Smiling, Laughing people.
CF/MR
go cubs
I think a major mistake that people make about Cf and people with CF is the disease itself. Meaning that most non-cf people want o know about the disease. I think (after having the disease) it would be better to learn about CF life. Not the management of CF, nor the complications but the life and little things that make the people with CF. Caring, Giving, Smiling, Laughing people.
CF/MR
go cubs
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>hi.i was wondering if you have cf. i have looked it up on this site.how do you live every day knowing you have a disease?well i gotta go my e-mail address is lulu_chick_14. Please write back.<hr></blockquote>
I don't mean to come across as rude but maybe research the topic a little. What are you expecting us to say, we find it so hard to live life every day knowing i have a disease??? Well life is life and I don't think you should ask such blunt questions. . .
I don't mean to come across as rude but maybe research the topic a little. What are you expecting us to say, we find it so hard to live life every day knowing i have a disease??? Well life is life and I don't think you should ask such blunt questions. . .
LilStrawberyShortness
New member
Christina,
you can IM me or E-mail me at LilStrwbryShrtns@aol.com if you would like to talk <img src="i/expressions/face-icon-small-smile.gif" border="0"> im 14 <img src="i/expressions/face-icon-small-smile.gif" border="0">
you can IM me or E-mail me at LilStrwbryShrtns@aol.com if you would like to talk <img src="i/expressions/face-icon-small-smile.gif" border="0"> im 14 <img src="i/expressions/face-icon-small-smile.gif" border="0">