Questions for the guys!!!!

[CookieMonsterKayla]

I would like to know about guys with CF. I have talked to girls and being a girl myself it kinda gets old. I want to know what its like on a guy. My name is Kayla, I just want to know what your meds are and what treatments you have to do. Also how many times a year do you go to the hospital? What do you like to do? How old are you? Those kind of things. Please and thank you.

 

[bigstar]

And dont think that boys and girls differ that much when it comes to CF. Its not a gender thing but genes matter more and every case is different. But im only saying this being a girl myself...

 

[CrisDopher]

I don't think the physical ins and outs are all that much different. Same meds, same treatments. But I do perceive a difference in how support networks form and function around men versus women. Men seem to generally stick it out on their own, or with one or two siblings or an SO to provide support, whereas women seem to have much wider, closer, and more active groups of friends supporting them.

 

[Aboveallislove]

I think there is some difference caused by hormonal changes in girls that makes CF harder on them. I'm pretty sure I've seen studies on it. On the other hand, emotionally, I would think the smaller size is easy for girls than boys.

 

[LittleLab4CF]

Something that is the same problem in both sexes presents quite differently. Women can harbor mucus in/around the uterus. Men mistakingly diagnosed with low sperm motility in fact have thickened semen. In my case they determined (wrong again) that many sperm had defective tails or flaggella. Diluting the seminal fluid to match typical viscosity and the sperm behaves normally. Who's sicker generally, men or women? I have never met a woman with CF but the usual population statistics of disease, morbidity and mortality should apply. More live births are female, defective males as with males in general abort or are stillblorn. At puberty and beyond many women deal with far more health issues than men. The breasts, ovaries and fallopian tubes fall prey to ductal blockages and cysts in the mammary glands, and fibroid cysts of the ovaries and tubes. These CF like problems can be exponentially worse by all measures. Since the menstral cycles are almost totally mucus and mucosal membrane driven. Having said all this men, myself included can only imagine what is natural to women. Women have conciderably more square inches of mucus membrane. Most of that extra mucosa needs to work overtime to prepare each month for pregnancy, clear it out if pregnancy doesn't happen and so on. With an TR error that can become quite taxing at a minimum, extremely painful and more at worst. A cold medical breakdown isn't the end all. It is rare that CF itself directly effects the brain so how sick or alive a person is mostly subjective.

The worst pain in the world is the most pain an individual has experienced. You can't understand illness unless you experience health. The height of joy must know the dephs of dispair. And visa versa.
I hope this helps.
LL

 

[LittleLab4CF]

Something that is the same problem in both sexes presents quite differently. Women can harbor mucus in/around the uterus. Men mistakingly diagnosed with low sperm motility in fact have thickened semen. In my case they determined (wrong again) that many sperm had defective tails or flaggella. Diluting the seminal fluid to match typical viscosity and the sperm behaves normally. Who's sicker generally, men or women? I have never met a woman with CF but the usual population statistics of disease, morbidity and mortality should apply. More live births are female, defective males as with males in general abort or are stillblorn. At puberty and beyond many women deal with far more health issues than men. The breasts, ovaries and fallopian tubes fall prey to ductal blockages and cysts in the mammary glands, and fibroid cysts of the ovaries and tubes. These CF like problems can be exponentially worse by all measures. Since the menstral cycles are almost totally mucus and mucosal membrane driven. Having said all this men, myself included can only imagine what is natural to women. Women have conciderably more square inches of mucus membrane. Most of that extra mucosa needs to work overtime to prepare each month for pregnancy, clear it out if pregnancy doesn't happen and so on. With an TR error that can become quite taxing at a minimum, extremely painful and more at worst. A cold medical breakdown isn't the end all. It is rare that CF itself directly effects the brain so how sick or alive a person is mostly subjective.

The worst pain in the world is the most pain an individual has experienced. You can't understand illness unless you experience health. The height of joy must know the dephs of dispair. And visa versa.
I hope this helps.
LL

 

[Aboveallislove]

Is there a way to "fix" the viscosity to normal, mucinex, other things?

 

[scarecrow]

Glutathione is what thins the mucus and what we don't make naturally. I have been taking 1000 mg/day and have seen some improvement. There are also things you can take that are supposed to improve the natural production of glutathione but I haven't tried any of them.

 

[Aboveallislove]

Is there a brand that has that? OTC?

 

[LittleLab4CF]

Hmmm. CF is a disorder that can make any one cell type to fatally all cell types inherently sticky. Every moist surface or organ that needs protective mucus or produces mucus for certain body systems could be compromised by CF. Mucus busters like Mucinex fit in the CF arsenal but for loosening mucus

 

[LittleLab4CF]

Glutathione has potential throughout the body guiafenesine (Mucinex) causes the body to secrete more mucus. This assumes the fresh mucus is thin like thining honey with water. CF mucus is thick when freshly excreted. Granted it can only get more viscous as with all people. If fresh mucus is impractically thick something akin to glutathione that can work on mucus prior to excretion would in theory make semen and the female egg/sperm host environment more likely to result in a pregnancy.

It has been a while since I studied glutathion and don't recall whether it acts prior or after excretion.

 

[BraxtonAcheson96]

Hi Kayla I'm Braxton and I'm a 16 year old male with CF and I currently am going to the hospital on average every 3 months for the regular check up. I have had a feeding tube for almost 6 years and I am extremely healthy and lucky that I am. I play several sports for my high school and can't wait to get a job.

How are you?

 

[beautifulsoul]

On the other hand, emotionally, I would think the smaller size is easy for girls than boys.

I agree with you. As far as physical appearance (being short/small), I would think this would be a bit difficult to deal with for the teen boys/men.

Welcome to the forums Braxton. I'm happy to hear that you're doing so well! I wish you the best

 

[djraitz94]

Hi everyone. I'm Dylan, I just turned 19 on March 1st, trying to get into the CF community a little more so I downloaded two forums and searched on social networks. I live in North Carolina, don't quite know all my meds right now due to so many changes, but I will get back to you with a list once I get my discharge papers from the hospital hopefully late next week. I'm generally in the hospital 3-5 times a year and the stays can vary in time, my shortest stay was 10 days, and my longest was 29, though I was admitted in lung failure at that point. I must admit I am quite careless when it comes to my lungs, but I'm trying to change that, if anyone wanted to talk one on one feel free to message me, I have several ways to be contacted if it becomes personal. To the rest of your questions, generally I stay at home and play video games, I'm an avid gamer and like it, they're my life away from CF where I can run jump and do all that fun stuff. Generally I never really thought about the difference in gender when it came to CF except how an iPort would get in the way, everything else never really crossed my mind. Anyway, I hoped this helps and look forward to joining the community more often in the forums!