please help

[JemmaluvinJohn]

hello, im not exactly an adult as im only 15 but today, my boyfriend told me he has c/f and im really worried. I know the basics but i want to know things like how long he would have to live. He has been having treatment since he was 9 months old and he is now 18, he said it doesnt really effect him and the only thing he cant really do is long distance running. please could someone give me some information because i cant stop worrying about him thanks xx

 

[EnergyGal]

I think it is best to ask your boyfriend how CF affects him. Tell him to be upfront with you on all aspects. Every case of CF is different. He would be the best source of information. So do not worry but ask your boyfriend and he will tell you.
you sound like a great girlfriend. I hope you both get along great and enjoy life.

 

[JemmaluvinJohn]

ok, thank-you. i just dont know how to approach it and what to ask him, he said to me it shoudnt effect how long he lives but ive been reading stories on the net and im not sure if he is telling me the whole truth.

 

[anonymous]

Nobody knows, how old he/she will get...
I´m 43 with cf and still quite ok with my own lungs.
Yes, he could get some kind of infection and get very sick or even die, but that could also happen to a "normally healthy" person...
Therefore I always tried to enjoy my life now!!!

Uli,43,Germany

 

[JemmaluvinJohn]

if he has a lung transplant will this help him to live longer?

 

[EnergyGal]

A lung transplant is an option for some very ill patients with cf. You have to be very sick to even qualify.

To approach him, you could say something like, "I really like to know how CF affects you everyday?" or "I read on the internet there are different breathing treatments that people with cf have to do, what are the treatments that are necessary for you?"

You can tell him it would make you feel better to learn more about his cf so if there is anything he needs to tell you that he tells you so you can feel like you are a part of his life with cf.

Keep in mind many young people in relationships hide their treatments feeling that if their girlfriend or boyfriend would find out that they might be scared off. Tell him that the more you learn about his life the better you will feel.

I am sure you will figure it all out. Be yourself and you seem to be one caring young lady.

Take it slow

 

[thelizardqueen]

I know you mentioned this in the teenage section that your boyfriend is on the transplant list. Many people live long lives post transplant, and after transplant he may be able to do things that he wasn't able to do before physically. The media age for a CFer is I believe 36, but everyone is different. There are people with CF in their 30s, 40s, 50s and even 60s. I don't think its quite true that CF doesn't effect how long he will live because it does. It all depends on how diligent he is with his treatments, physical activity, the environment around him and genes.

Good luck!

 

[Allie]

Several things about this confuse and/or trouble me.

1) you said on your post in teenagers that he's on a transplant list, but you say the only thing he can't do is long distance running? <div class="FTQUOTE"><begin quote> he is also on the list for a lung transplant;only thing he cant really do is long distance running </end quote></div> That doesn't make sense to me. You only get a lung transplant if you're seriously ill.

2) This: <div class="FTQUOTE"><begin quote>he said to me it shoudnt effect how long he lives </end quote></div> people are going to hate me for saying this, but as life stands right now, he is lying to you. The average lifespan of an adult male is 75. I don't believe a Cf patient has ever gotten that old, maybe one. So if he honestly said that, I would be deeply concerned that he's not telling you the truth.

 

[thelizardqueen]

I agree with you Allie, as I posted that before you. You should try sitting your boyfriend down and really talking to him about this. Transplant is a very serious thing for a CFer, and the fact that he's on the list means that he isn't very well, and long distant running is probably only ONE of the things that he can't do. Like I mentioned, some people live long lives post transplant so long as they are diligent with meds, treatments, etc. He has GOT to take care of himself.

And yes, CF does effect how long you live. Sure you can be hit by a bus tomorrow, but the realistic thing about CF is that it is terminal. Not a lot of people live long old age lives. This is why keeping to treatments, physio and meds is so important!

 

[anonymous]

My two cents:

I think possibly he may have difficulty sharing all the information that you feel you need to know because of not wanting to scare you off with the truth, possibly he is just enjoying your company and the moment...

At the age you are, "relationships" were (for me) purely were a flight of fancy thing, some lasted days, weeks or months if you were lucky...for your boyfriend, (really can't speak for him though) CF is a life directing thing...you are 15 years old, talk to him and get as much understanding as you can of CF but let him open himself up to you over time...he will when he see's you hanging in there...

In the end it's up to him to share what information he chooses to share, be his friend and be open and honest yourself and then he may follow...if he's not being completely open and honest he's just protecting either you or himself...or you both...don't judge him for it, try and understand him the best you can.

Pete (forgot to sign in)