I do not have cf but would like to have a better under standing of it for my boyfriend (with cf)What is it like to wake up every morning with it?What do you have to do to treat it? What are the limitations on life activitys? How does it feel?I hope I am not offending anyone with these questions if I do I am sorry. Loving Girl friend<img src="i/expressions/face-icon-small-confused.gif" border="0">
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Help What is it like living with it?
- Thread starter anonymous
- Start date
To Loving Girlfriend: I also am a loving girlfriend. I guess the best way for you to deal with his illness is to trust what he tells you. Ask questions when you are curious, tell him that you understanding this disease is important to you. Hopefully he will tell you everything you want to know. Everyone with CF has it differently, some people are effected more than others, so everyone is going to feel different in the morning. The hardest thing I had to get used to was when he would cough, I thought he was never going to stop and it sounded so bad. I got used to his cough and accept him for the amazing man that he is. My boyfriend, Shane, is 33 years old and is doing great. I appreciate everyday that we have together. I would never give up the day that I met him. He has truely changed my life. Educate yourself and you can ask questions. How old are you both? Where do you live? How is his health generally? If you have any questions with how to deal with loving someone with this diesase please e-mail me. I would love to let you know what helped me accept this diesase as part of my everyday. Another thing that helps me feel better about it is that I do charity work with the Cystic Fibrosis Foundation and I tell as many people that will listen about the diesase. It is my way of making CF more popular. CFF website- www.cff.orgAmandaTampa, FL
hi i am a loving boyfriend of a girl with cf. i am also confused and scared for her. that is with my own ignorance. however, i want to know what i need to do and what i can do to help when she is down. i am far away from her for the next six months and am scared for her. she just had surgery on her arm and there are cysts all over her body. I am scared. i just do not know what to do. any help would be much appreciated. thank you
To Boyfriend, The best thing about loving someone with CF is that you never take one day for granted. Educate yourself, when you are more informed it will help you not be so confused. Also ask her if lots of questions about what her Dr. says about her specific case. There are more and more treatments everyday to help with CF symptoms. Good luck and believe in the power of mind over matter. The way she thinks has a lot to do with how she feels. Help her keep a positive attitude. My boyfriend is 33 and still going strong, this sugery is just a hurdle she has to jump in life. My best wishes for her and you.ASander6@tampabay.rr.com
I hope your doctors visit next week goes well. I get nervous when he has to go to the doc. This message board is cool, it is good to be able to hear about other people that live with CF everyday. I know it is different for me b/c I don't have CF, but I love someone that does. If you want to talk any further that would be great. I am 24 and a student at HCC. My name is Amanda. Just e-mail me or message on this board.
To Loving Girlfriend..........Life with CF is different for every patient. Myself, I am 31 and I still continue to play hockey and try to work-out on a regular basis, or as much as my lungs and body will allow. My doctor has always told me to try to keep that up because it can always be to my benefit. At 31, I have obviously noticed a significant change in my lung capacity and I seem to get winded a little easier, but it has not stopped me in attempting to do the things I have been doing since I was a child. My brother also has CF and has also been very active throughout his life. Oh and I also have a cousin with CF. I still have to use a Nebulizer (to breathe in meds) every day and unless a cure comes soon, I will probably have to for the rest of my life in order to keep my lungs as healthy as I can. Unfortunately, not everyone can be as active as we are. I personally know a couple of people who have gone through double-lung transplants because their lung capacity was so low that they couldn't even walk up a flight of stairs without being winded. I'm not sure if this will help at all, but it's not exactly an easy and straight-forward answer to the question "What is life like with CF". For some, it is HELL. For myself and for others, I must say that it does suck, but I try not to let it effect how I live my life or how I look at my future. Sometimes that is very difficult to do. For you all I can say is try to live everyday to the fullest with him, as I'm sure he tries to on his own. Find out as much as you can about CF to help you understand where he is coming from when he feels a certain way. My wife of 8 years probably knows more about CF and the meds that I am on than I do. Maybe thats because I tend to get into a groove and do what I need to each day. You tend to forget why you take certain meds or do certain treatments. Having someone there beside you who understands and can support you through anything, is a great help and an even better motivator to stay healthy. We have been married for 8 years, own our own home and have made a pretty good life for ourselves. I don't know if I would be where I am without her. Hopefully this helps answer your question.
DitsyBlondChick1
New member
Loving girlfriend,That's cool. Im from yakima washington.
Amanda- I have a best friend that has cf and although I don't like to call him a boyfriend- that's pretty much what he is. I get down a lot because of all the pain he has to go through. I know that it kind of bothers him that sometimes I get more depressed about the things he has to go through, and I was just wondering if you have any suggestions dealing with all the worry that comes with loving someone with cf.--a best friend