My 24 year old boyfriend has Cystic Fibrosis and i’m having a difficult time coping. Anyone in this situation?
Author: admin | Category: coping with difficult peopleMy boyfriend whom i’ve been with for the past year has Cystic Fibrosis. He’s such a great guy and he does all he can to keep up with his health but it seems like hes declining very quickly these last few months. I’m doing undergraduate work in genetics so unfortunatly, sometimes, I get more worried at his doctor’s appointments then he does becuse i understand the prognonis on a different level. I’ve been involved in cystic fibrosis research projects in hopes of learing some new things to help him but overall its just a hard life! I worry all the time and its even worse because I go to a University 2 hours from where he lives. Lately i’ve been worrying about the future with him. I want to be with him, i’m sure of it, but i’m just so scared to lose him! His lung function is down to 25% and hes on home IV right now. I would love to hear from someone else who is in this situation. It would be nice to talk to someone.
I totally feel for you. My bf has CF - he’s 31 and his FEV1 teeters between 34-39. But when I met him - he was down to 25 because he wasn’t taking care of himself - weight down to 125 (now 165) at 5′10". He was told he needed a double lung transplant but it’s being delayed now.
I know how hard it is. The first year we were together I would often start crying randomly because I was afraid of losing him. That still happens but I’ve learned to cope better with time - though he was in the hospital twice between New Years and February of this year - and I thought it was the beginning of the end.
I worry and obsess more than him - even though I’m not studying genetics. They live it - we live through it with them but want to help so much more.
It’s hard - I just posted a question today because I feel like I want to die. He doesn’t want to get married or have kids because he feels like life is hard enough as it is. He didn’t feel like that in the beginning - now I’m 35 and feel so torn.
Coping is so hard. I really feel for you. I wish I could say something that could take your pain away. People say you should take comfort in knowing others are out there in the same or worse situations - but personally, it doesn’t make me feel better.
I feel for you.
October 15th, 2009 at 4:28 pm
start getting back up and prepare yourself for the inevitable. but dont be too pessimistic, even if its hopeless maybe your love will give him more incentive to fight for life. even if he does die, believing in him will be best. love can work wonders. doctors thought i was going to die when i was born but i made it.. i know cystic fibrosis is different, but if you really do love him, love him til the end and have other supports to rely on when it happens.
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October 15th, 2009 at 5:01 pm
The only products I know that you can see if they can help are
Ambrotose on http://www.glycoscience.org , google search for "glyconutrients", email esell4ou@yahoo.com for more info.
the other is http://youtube.com/watch?v=0qpfX-yXa04
more info share@west.net
Ref: Amanda
Maybe it can help him…
References :
Not into the phamesuiticals
October 15th, 2009 at 5:09 pm
Hi i am 20 years old and i have cystic fibrosis! The thing with cystic fibrosis as you probably know is it is degenerative so over time we get worse, its quicker for some than others but all the medication trys to prolong the time that we are healthy for. I cant really understand what its like to be in your shoes but i know my dad and family find it hard. Often they worry about it more than i do. You said you feel you worry more than your boyfriend but its probably just that he doesn’t want to think about it. I know i don’t so i tend to try and block it out! My last boyfriend couldn’t cope. we were together for over a year and when i got ill he wasnt there for me. It was horrible so my advice to you is if you really love him all you can do is be there for him. Try not to show that its getting you down and basically just be there for him. There are things that can help. Im guessing if his lung function is below 25% that he is on the transplant list?? Im not there yet my lung function is 40 % but its getting less. But when i worry about things my dad always says people can live for years once they ve had transplants so just keep your spirits high and i know its hard but try! Im here if you ever wanna talk! x
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October 15th, 2009 at 5:16 pm
I totally feel for you. My bf has CF - he’s 31 and his FEV1 teeters between 34-39. But when I met him - he was down to 25 because he wasn’t taking care of himself - weight down to 125 (now 165) at 5′10". He was told he needed a double lung transplant but it’s being delayed now.
I know how hard it is. The first year we were together I would often start crying randomly because I was afraid of losing him. That still happens but I’ve learned to cope better with time - though he was in the hospital twice between New Years and February of this year - and I thought it was the beginning of the end.
I worry and obsess more than him - even though I’m not studying genetics. They live it - we live through it with them but want to help so much more.
It’s hard - I just posted a question today because I feel like I want to die. He doesn’t want to get married or have kids because he feels like life is hard enough as it is. He didn’t feel like that in the beginning - now I’m 35 and feel so torn.
Coping is so hard. I really feel for you. I wish I could say something that could take your pain away. People say you should take comfort in knowing others are out there in the same or worse situations - but personally, it doesn’t make me feel better.
I feel for you.
References :
October 15th, 2009 at 5:35 pm
My hat is off to you. I know there are support groups out there, have you looked at cysticfibrosis.com, or cff.org?
Good for you on being involved with CF research. I hope that people like you can find a cure for this dreadful disease.
Now, about your boyfriend, hoping the IV’s help him with this exacerbation. I don’t know what his normal lung functions are, or if he is thinking about lung transplant, or what all else is going on with him. I know worry is a pretty normal part of loving someone with CF. I don’t know if that will change.
I am a CF research coordinator, and I believe very strongly that there will be a cure. Hang in there.
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June 11th, 2010 at 4:07 am
my boyfriend is 24 years old and has CF as well. i hate going to the dr with him because i feel like suddenly i am the one who can\’t breathe. we go through our day like nothing is wrong but i count how many times he coughs, if he coughs as soon as he wakes up or moments later, what time he took his medication, and if i find myself holding his heart at night because i have to make sure he\’s alright. i am scared to death just like you are. i read all over that the age of 35 is a high point but i don\’t want to lose him in ten years. i want a family with him and to grow old with him. what i am trying to say is it\’s alright to be scared and you have people who truly do understand..