Boyfriend Recently Diagnosed

[3RingCircus]

At nearly 23 years old, this is quite a life change for him (and everyone else in his life.)
I don't recall exact gene mutations, I don't know what most of the words are skimming through threads on here. I've done a bit of research on my own, but I feel rather powerless to help him.
He just received a vest and a nebulizer for treatment. We do know that he is infertile.
This afternoon he was admitted with another infection. Over the weekend he had attended a very crowded convention, must have picked up some germs. We didn't even think of this beforehand. This is all so new to us.
I know we should crack down on germs in his environment. He stays several days a week with us (myself and my three kids.)
I've thought of:
Routinely disinfecting things like handles, knobs, keyboards, phones, counters, etc.
Wearing masks and gloves out in public.
MUCH more handwashing.
Carrying bottles of sanitizer or wipes.
Having him wear at least gloves at work (he is a car wash attendant at the moment.)
Since he is with us so often, and my kids are ages 5 and under, there could be a lot of transferable germ-ing. I figure we should ALL do these things, would be good for us anyway!
I don't know what anyone can tell me, but if you COULD tell me anything, please do. This certainly changes my perspective on what the rest of my life will be like. He is an incredible person, I love him, and we're pretty serious about staying together. His diagnosis doesn't change that, but it of course changes some aspects of that. I'm not even sure of all the ways it could.
Words of advice? Suggested diet changes? Suggested home changes? Infection prevention tips?

 

[3RingCircus]

At nearly 23 years old, this is quite a life change for him (and everyone else in his life.)
I don't recall exact gene mutations, I don't know what most of the words are skimming through threads on here. I've done a bit of research on my own, but I feel rather powerless to help him.
He just received a vest and a nebulizer for treatment. We do know that he is infertile.
This afternoon he was admitted with another infection. Over the weekend he had attended a very crowded convention, must have picked up some germs. We didn't even think of this beforehand. This is all so new to us.
I know we should crack down on germs in his environment. He stays several days a week with us (myself and my three kids.)
I've thought of:
Routinely disinfecting things like handles, knobs, keyboards, phones, counters, etc.
Wearing masks and gloves out in public.
MUCH more handwashing.
Carrying bottles of sanitizer or wipes.
Having him wear at least gloves at work (he is a car wash attendant at the moment.)
Since he is with us so often, and my kids are ages 5 and under, there could be a lot of transferable germ-ing. I figure we should ALL do these things, would be good for us anyway!
I don't know what anyone can tell me, but if you COULD tell me anything, please do. This certainly changes my perspective on what the rest of my life will be like. He is an incredible person, I love him, and we're pretty serious about staying together. His diagnosis doesn't change that, but it of course changes some aspects of that. I'm not even sure of all the ways it could.
Words of advice? Suggested diet changes? Suggested home changes? Infection prevention tips?

 

[Ratatosk]

Our child was diagnosed as an infant and I guess the biggies for us are hand washing and hand sanitizer -- when we get home, before meals, after shopping... Avoid touching face with hands. Try to avoid sick people. When I have a cold or am sick I wipe down surfaces more, avoid DS, wash hands more often. When he was an infant and I got a cold, I'd wear a mask.

Flu shots each year for not only him, but anyone in close contact -- so you, your kids...

Be proactive in terms of vest and neb treatments. At least twice a day, more if he is coming down with a cold or cough.

Avoid smoke -- people who smoke. Second or third hand smoke...

Exercise is important. Being active.

Sterilizing nebulizer cups after each use. We use the kind that can be boiled. We have several sets, so I put them in a huge pot and boil them daily.

 

[Ratatosk]

Our child was diagnosed as an infant and I guess the biggies for us are hand washing and hand sanitizer -- when we get home, before meals, after shopping... Avoid touching face with hands. Try to avoid sick people. When I have a cold or am sick I wipe down surfaces more, avoid DS, wash hands more often. When he was an infant and I got a cold, I'd wear a mask.

Flu shots each year for not only him, but anyone in close contact -- so you, your kids...

Be proactive in terms of vest and neb treatments. At least twice a day, more if he is coming down with a cold or cough.

Avoid smoke -- people who smoke. Second or third hand smoke...

Exercise is important. Being active.

Sterilizing nebulizer cups after each use. We use the kind that can be boiled. We have several sets, so I put them in a huge pot and boil them daily.

 

[Printer]

I was dx at age 47. He is likely the most unhealthy now, that he will be for a very long time. He has gotten this far without treatment. He needs to follow the meds and treatments, religiously.

When he gets out of the hospital, after his clean out, he will be feeling much better. He needs to be seen regularly at an APPROVED CF CENTER by an CF SPECIALIST.

Have faith, it will get better from here. I know, been there, done that.

Good luck,
Bill

 

[Printer]

I was dx at age 47. He is likely the most unhealthy now, that he will be for a very long time. He has gotten this far without treatment. He needs to follow the meds and treatments, religiously.

When he gets out of the hospital, after his clean out, he will be feeling much better. He needs to be seen regularly at an APPROVED CF CENTER by an CF SPECIALIST.

Have faith, it will get better from here. I know, been there, done that.

Good luck,
Bill

 

[catsmoore]

just read your message , sorry for your troubles . i know how you feel it's like walking through a fog of uncertainity trying to deal with a cf diagnosis and all the medical jargon there is so much to take in and so many people to deal with! my daughter was diagnosed in may 2010 at 8.5 yrs old i was very angery as she was born with a blocked bowel and should of had cf ruled out at birth .. anyway try to keep strong and take in as much information as u can one day at a time, look after yourself and each other . late diagnose is usually a good sign also. take care. cats

 

[catsmoore]

just read your message , sorry for your troubles . i know how you feel it's like walking through a fog of uncertainity trying to deal with a cf diagnosis and all the medical jargon there is so much to take in and so many people to deal with! my daughter was diagnosed in may 2010 at 8.5 yrs old i was very angery as she was born with a blocked bowel and should of had cf ruled out at birth .. anyway try to keep strong and take in as much information as u can one day at a time, look after yourself and each other . late diagnose is usually a good sign also. take care. cats

 

[kitomd21]

CF is a complicated condition...but, I agree with the above posters that he's fortunate to have been diagnosed so late...many others don't avoid diagnosis because they have recurrent infections requiring hospitalizations. Just my two cents - I would tend to think that working at a car wash (I know...easier said than done - a job is a job) may expose him to unnecessary levels of aerosolized bacteria. Just a thought...

 

[kitomd21]

CF is a complicated condition...but, I agree with the above posters that he's fortunate to have been diagnosed so late...many others don't avoid diagnosis because they have recurrent infections requiring hospitalizations. Just my two cents - I would tend to think that working at a car wash (I know...easier said than done - a job is a job) may expose him to unnecessary levels of aerosolized bacteria. Just a thought...

 

[athletixbc]

I was diagnosed at age 20, so not all that dissimilar from your bf. I'm almost 37 now and still doing relatively well for my age.

First things first. Live your life as normal as possible. There is really no need for the gloves and the masks unless someone in your family is known to be sick. In those instances, use them or just avoid the sick person. Wash hands after using the bathroom and before eating. If eating out, a little bottle of the alcohol based cleanser is helpful. In reality, everyone should be doing this, not just you, your bf, and your family.

Diet tips would depend a great deal on what his pancreatic sufficiency is. Does he frequently have loose stools or constipation? If so, he probably needs to see a GI specialist and start taking dietary enzymes with his food. Ask the doctor about pancreatic sufficiency. Most CF doctors would prefer to have the person eat whatever they want to eat and use enzymes and other medications to deal with any issues that arise.

One lifestyle change that is difficult for many CF'ers is exercise. If your bf was not a physically active person before, he should get used to doing some kind of exercise that gets him breathing hard for 30 minutes at least 3-4 days a week, more often if possible. I use treadmill and stationary bike a lot. I also like weight training. A lot of CF'er get this woe-is-me attitude and refuse to do exercise which is the worst possible thing he could do.

Depression is not uncommon in people with CF, especially those who have frequent inpatient hospital stays. Most CF clinics have a psychiatrist on staff and I highly recommend if he feels low at all to make an appointment to see them. Not saying he is depressed, but that is something to watch out for. Often depressed people don't realize they are depressed until someone close to them points it out.

As far as work is concerned, he just needs to be practical about it and use common sense. I quit my job as manager of a large bowling center because my doctor told me dealing with rental shoes was probably not the best thing for germ control. Instead, I do data entry work for a real estate firm.

 

[athletixbc]

I was diagnosed at age 20, so not all that dissimilar from your bf. I'm almost 37 now and still doing relatively well for my age.

First things first. Live your life as normal as possible. There is really no need for the gloves and the masks unless someone in your family is known to be sick. In those instances, use them or just avoid the sick person. Wash hands after using the bathroom and before eating. If eating out, a little bottle of the alcohol based cleanser is helpful. In reality, everyone should be doing this, not just you, your bf, and your family.

Diet tips would depend a great deal on what his pancreatic sufficiency is. Does he frequently have loose stools or constipation? If so, he probably needs to see a GI specialist and start taking dietary enzymes with his food. Ask the doctor about pancreatic sufficiency. Most CF doctors would prefer to have the person eat whatever they want to eat and use enzymes and other medications to deal with any issues that arise.

One lifestyle change that is difficult for many CF'ers is exercise. If your bf was not a physically active person before, he should get used to doing some kind of exercise that gets him breathing hard for 30 minutes at least 3-4 days a week, more often if possible. I use treadmill and stationary bike a lot. I also like weight training. A lot of CF'er get this woe-is-me attitude and refuse to do exercise which is the worst possible thing he could do.

Depression is not uncommon in people with CF, especially those who have frequent inpatient hospital stays. Most CF clinics have a psychiatrist on staff and I highly recommend if he feels low at all to make an appointment to see them. Not saying he is depressed, but that is something to watch out for. Often depressed people don't realize they are depressed until someone close to them points it out.

As far as work is concerned, he just needs to be practical about it and use common sense. I quit my job as manager of a large bowling center because my doctor told me dealing with rental shoes was probably not the best thing for germ control. Instead, I do data entry work for a real estate firm.