Dating another CF person
- Thread starter semnle34
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beautifulsoul
Super Moderator
I know of a few people who have. There is a CF on couple on facebook that is married but I'm pretty sure they both ended up with transplants. I'm not sure how sick they were before they met each other. I would not recommend it because of cross infections. Can be deadly to both people. I Don't think love is worth my life. Just my opinion. It's definitely nice to have something in common and someone who understands completely but these days CF people can chat online, video call, text, etc. there are plenty of fish in the sea that don't have CF. Why risk it?
I've read a couple of articles about CF couples. One in the Reader’s Digest 15 years back. They met in the hospital in their early 20s and spent 1-2 years as a couple before each passed within a few months of each other.
Another story of a CF couple was recently in the news, comparing them to the characters in the movie "The Fault in Our Stars." They met online. He had B. Cepacia and she didn't. Doctors recommended they maintain a physical distance. She had the attitude that the she'd accept the consequences for love and risk the infection. She ended up with Cepacia and lost the rest of her lung function. Her state's Medicaid didn't want to pay for a transplant, and her nearby hospitals didn't do transplants for people with B. Cepacia. In the end, the news story generated enough sympathies to open the resources for her to go to Boston for a transplant.
I agree with Amber, lots of fish in the sea and lots of ways to have connections and friendships with other CF folks while maintaining proper physical distance. That being said, I hang out with my brothers and that would be a cross-infection risk if we didn't already have similar colonies.
Another story of a CF couple was recently in the news, comparing them to the characters in the movie "The Fault in Our Stars." They met online. He had B. Cepacia and she didn't. Doctors recommended they maintain a physical distance. She had the attitude that the she'd accept the consequences for love and risk the infection. She ended up with Cepacia and lost the rest of her lung function. Her state's Medicaid didn't want to pay for a transplant, and her nearby hospitals didn't do transplants for people with B. Cepacia. In the end, the news story generated enough sympathies to open the resources for her to go to Boston for a transplant.
I agree with Amber, lots of fish in the sea and lots of ways to have connections and friendships with other CF folks while maintaining proper physical distance. That being said, I hang out with my brothers and that would be a cross-infection risk if we didn't already have similar colonies.
What I don't understand is if neither one of us have Cepacia, we both know exactly what infections we have, we do all of our treatments and tell each other when we aren't feeling well and stay away from one another when we are sick how can we make each other sicker? It is so disheartening to me that you find someone who gets you 100% and you cant be with them because you MIGHT get cross contamination. This disease really sucks in more ways than one. Im so frustrated.
If you're both consenting adults then you can make your own choices. But because CF can affect each person so differently it's impossible to know if the bugs you grow but don't give you that much trouble might cause a dramatic decline for your partner. Of course the flip side of that being that it might not cause any major issues. You just don't know. If you feel the well documented risks are worth your life or your partners life then I don't think anyone can stop you. I don't mean to sound dramatic but the cross-contamination isn't a "no big deal" kind of issue. It is a very real risk.
D
Dank
Guest
Love makes us all do foolish things that we think are okay in the moment. The moment could last months or years. Love can be blamed, but it's our own individual actions that have caused the consequences. I think I am fairly healthy for a CF'r due to two rare genetypes and most of my lung function, however I would never chance being near a CF person, let alone being in a relationship with them. Life is worth living, and you can't very well live if you are becoming increasingly sicker and potentially even more fatally ill from the person you love.
In perspective, with a rough upbringing there was a point in my life where I thought I should find a girl/woman who had been through a lot to, so she could relate to me. What I ended up with what a woman who had been through more abuse, family drama, and life throwing her bad hands of cards over and over. This caused my life to be very negative, and we disagreed on a lot of things. Ultimately, I was the best BF she had, and even though we fought she knew she would not find someone with his life together or as good as a guy as I was, even though our personalities weren't compatible. This went on for about 7 months. Whereas she could relate to the broken home, foster care - kind of life I had been living, she was not a good role model for me to get in a better place in life. I've since given up on that idea and decided that finding someone with good values and morals would be better in the long run. So I found someone who has had almost NO life trauma and drama, and she truly is a gem. She makes me want to be healthier, makes me want to live better, feeds me healthy foods, tries to get me to exercise with her. Someone positive and motivational who I have very little in common with.
Why did I go into that rant? Well, because simply at the time I thought that finding someone who I could relate to was important, and so I looked for it. I found what I was looking for ( as you will if you look hard enough ) and it was a bad decision. I loved her and she loved me, but we were terrible for each other. Love and happiness are what some people make their life all about, and I'm not saying this is bad. What I am saying is you choose to make the life you live, and love the people you love.
Under no circumstances should you value love with someone else, over the love of your own life. Dating someone with CF and having CF is bad for your health, and your life. It's not worth the risk to damage your own life and happiness.
In perspective, with a rough upbringing there was a point in my life where I thought I should find a girl/woman who had been through a lot to, so she could relate to me. What I ended up with what a woman who had been through more abuse, family drama, and life throwing her bad hands of cards over and over. This caused my life to be very negative, and we disagreed on a lot of things. Ultimately, I was the best BF she had, and even though we fought she knew she would not find someone with his life together or as good as a guy as I was, even though our personalities weren't compatible. This went on for about 7 months. Whereas she could relate to the broken home, foster care - kind of life I had been living, she was not a good role model for me to get in a better place in life. I've since given up on that idea and decided that finding someone with good values and morals would be better in the long run. So I found someone who has had almost NO life trauma and drama, and she truly is a gem. She makes me want to be healthier, makes me want to live better, feeds me healthy foods, tries to get me to exercise with her. Someone positive and motivational who I have very little in common with.
Why did I go into that rant? Well, because simply at the time I thought that finding someone who I could relate to was important, and so I looked for it. I found what I was looking for ( as you will if you look hard enough ) and it was a bad decision. I loved her and she loved me, but we were terrible for each other. Love and happiness are what some people make their life all about, and I'm not saying this is bad. What I am saying is you choose to make the life you live, and love the people you love.
Under no circumstances should you value love with someone else, over the love of your own life. Dating someone with CF and having CF is bad for your health, and your life. It's not worth the risk to damage your own life and happiness.
No truer statement that this^.
While I think that any two adults can make their own choice and live with the consequences of those choices (granted no two adults are an island and should still make smart choices), once you are a parent then you have to also consider the consequence your choices have on your children. It is a very heavy responsibility that leaves parents sacrificing their own freedoms/wants/needs for the best interest of their kids.
You probably already think about this already, but how would a choice to date someone with CF affect your 6 yr old? As much as you might need someone with CF to help you, your daughter might someday need an adult in her life (future step-dad) who understands what it is like to deal with all the sucky things that come with loving someone with CF. And what your daughter probably doesn't need, is a mother that is willing to sacrifice health and years with her daughter for a paramour that is dealing with identical health trials.
I think about how I feel when I'm sick. Then I think about living with someone who also feels this bad, plus is going to get me sick too. So there you both sick unable to wash the dishes, do the laundry, cook dinner......
so who really helps when you are sick? You have two people in one house that are worthless when sick. That is not much of a support system.
so who really helps when you are sick? You have two people in one house that are worthless when sick. That is not much of a support system.
beautifulsoul
Super Moderator
You are right about that. This sounds kinda stupid but when I was a kid/teen I would specifically distance myself from male CFers around my age because I didn't want to fall for one. (Example: Don't message/text everyday) It's fairly easy to avoid the situation to begin with. Set some boundaries. Then later on you can't say "It just happened" Things simply don't "just happen" Just my two cents.
beautifulsoul
Super Moderator
Great common sense thinking! That is reality to the tee.
imported_Momto2
New member
You have the added bonus of most likely shortening the life, via passed infections, of someone you love. Doesnt get much more fun that that. 
Aboveallislove
Super Moderator
such great advise...and my approach and view on opposite sex friendships too now that I'm married!
Hi Semnle,
I'm sorry that you are confronted with this situation/decision. This disease causes so many problems in addition to the physical. Ugh.
Firstly, I want to say that I think there have been SO many excellent responses here, and I agree with the collective sentiments that it's a bad idea. Others have spoken very intelligently and eloquently about the reasons why so I won't say a ton on that. I will say that I, especially being a mom of a little girl, try to avoid cross-contamination at great lengths. At clinic visits I mask and glove up upon entering, I try to limit what I touch, hand wash and hand sanitize excessively on bathroom visits and when leaving etc.. I worry so much about catching a new bug and having it be the "beginning of the end" for me and what that would mean for my daughter.
The other thing I want to say that others touched on is, that even if you both only cultured PA right now (for example) that doesn't mean that one of you can't/won't pick up a bug in the future and spread it to one another. Also, there are varying strains of PA, so even though you may both have it, it could be a different strain.
So, in a nutshell, it's something I personally would never risk, and quite frankly scares the bejesus out of me. With that being said, however, I am friends with a gal with CF whose husband also has CF. They recently (a month ago), welcomed a baby boy via surrogate. We all 3 go to the same clinic, and while we've never met in-person (that pesky cross-contamination), we keep up with one another on FB. She is a super sweet, friendly lady, so if you decide (against all of our brilliant advice, lol) this relationship is something you may pursue, she would probably be willing to talk to you about their experience and if she has any advice for you. PM if you'd like her name.
Best of luck to you!
Autumn 34 w.CF
I'm sorry that you are confronted with this situation/decision. This disease causes so many problems in addition to the physical. Ugh.
Firstly, I want to say that I think there have been SO many excellent responses here, and I agree with the collective sentiments that it's a bad idea. Others have spoken very intelligently and eloquently about the reasons why so I won't say a ton on that. I will say that I, especially being a mom of a little girl, try to avoid cross-contamination at great lengths. At clinic visits I mask and glove up upon entering, I try to limit what I touch, hand wash and hand sanitize excessively on bathroom visits and when leaving etc.. I worry so much about catching a new bug and having it be the "beginning of the end" for me and what that would mean for my daughter.
The other thing I want to say that others touched on is, that even if you both only cultured PA right now (for example) that doesn't mean that one of you can't/won't pick up a bug in the future and spread it to one another. Also, there are varying strains of PA, so even though you may both have it, it could be a different strain.
So, in a nutshell, it's something I personally would never risk, and quite frankly scares the bejesus out of me. With that being said, however, I am friends with a gal with CF whose husband also has CF. They recently (a month ago), welcomed a baby boy via surrogate. We all 3 go to the same clinic, and while we've never met in-person (that pesky cross-contamination), we keep up with one another on FB. She is a super sweet, friendly lady, so if you decide (against all of our brilliant advice, lol) this relationship is something you may pursue, she would probably be willing to talk to you about their experience and if she has any advice for you. PM if you'd like her name.
Best of luck to you!
Autumn 34 w.CF
W
windex125
Guest
Dank I related to your post 100% enough that I felt as though I could of typed it myself. When your young and you find someone that relates to a similar back round, you feel comfort a, like a warm fire and a good glass of red wine, which you find later in life LOL I as well met someone with a similar hard young life thought, wow someone had it as bad as me. But in the end you can't fix anyone, they have to do that themselves, and if you decide to go on with the relationship, you face the same situations you grew up with. I feel I am living proof of that, and I married him 35 years ago. I was gonna make it all better. Wrong again. This was when I became un diagnoised from age 8-21 Then re diagnosed later in life. Young people think before you leap. First and for most as Dank states you must love yourself to be able to share love. This sounds terrible but I've always loved myself even from a young age... I am not sure were that came from??? It was not my parents or siblings either. I was the different one, out of 4 I was also the only sickly one as well. I would not become involved with a CF person ever, or any other sickness. I am a very compassionate person in spite of how I may sound here. But I've had it rough and if I could go back and change it I would. But you don't get that second chance. Of course you are going to do as you please anyway, but why put yourself or the other person you care so much for at risk? Some people may think they will not find love because of this disease, but a good portion of the people on this site have found love, and are in relationships I think we are truly a strong bunch. We have to fight to keep well, do a lot of work each and every day. It's the hardest job I've had thus far. I worked in the corporate world. I mothered a son which I was told I would never have a baby. Motherhood was harder than the career for sure. We are finally starting to get along he will be 25 this December. But this teenage years killed a big part of me. Also I feel a lot o the younger people have that thought in their head who cares, I'm not going to live long anyway... Hello I will be 61 in December. If you live with that thought in the back of your head are you really living life to the fullest, are you loving yourself the way you should? Okay enough said, please give some thought to your decision. Many Hugs Pat/60
Renee Vasquez
New member
I dated someone else with CF for 2 years. We lived together and I never got sick from him. BUT i'm a VERY mild case and his was more severe than mine. He was 5 years older than I am and we met on a site like this one. When I first found out i had CF. I got on Forums and he was the only one to continue conversations with me and not think my questions were morbid. We talked for 2 years until I turned 18, then we met and started dating.
Its not easy to date someone else with CF. The comfort of them semi-understanding what your going through is good. If they happen to be sicker than you, the fear of watching that unfold and "knowing" one day that'll be you sucks. Knowing you can't really do anything about it sucks, but thats every relationship. I was his 2nd GF with CF too. His first was his same age, maybe a year younger and she passed away well we were together. Which was scary as well, i'm sure we all hate hearing those stories of people with CF passing, she was only 22 and that was troubling to hear at 19 as well. Worse for him i'm sure. Anyways. My doctor hated it, mind you I was still seeing a pediatrician. She called it committing suicide and was very hateful towards it. We broke up after 2 years, nothing to do with the CF. We had talks about what we do in the future as far as children, since we couldn't have them together. We talked about marriage and insurance and all that fun stuff. It didn't seem to bother either of us that potentially we could die sooner because of being together. But I was young, and more so dreamed it up in a dieing for love sort of way.
Big picture, we can't help who we love. Its easy to relate to someone who shares your troubles and understands a little more than any completely healthy partner could. It'd be reallllllly hard once someone gets sick, realistically. That being said sometimes a while of happiness is worth it. Depends on you and the other person and how much happiness you have already i suppose.
Goodluck.
Its not easy to date someone else with CF. The comfort of them semi-understanding what your going through is good. If they happen to be sicker than you, the fear of watching that unfold and "knowing" one day that'll be you sucks. Knowing you can't really do anything about it sucks, but thats every relationship. I was his 2nd GF with CF too. His first was his same age, maybe a year younger and she passed away well we were together. Which was scary as well, i'm sure we all hate hearing those stories of people with CF passing, she was only 22 and that was troubling to hear at 19 as well. Worse for him i'm sure. Anyways. My doctor hated it, mind you I was still seeing a pediatrician. She called it committing suicide and was very hateful towards it. We broke up after 2 years, nothing to do with the CF. We had talks about what we do in the future as far as children, since we couldn't have them together. We talked about marriage and insurance and all that fun stuff. It didn't seem to bother either of us that potentially we could die sooner because of being together. But I was young, and more so dreamed it up in a dieing for love sort of way.
Big picture, we can't help who we love. Its easy to relate to someone who shares your troubles and understands a little more than any completely healthy partner could. It'd be reallllllly hard once someone gets sick, realistically. That being said sometimes a while of happiness is worth it. Depends on you and the other person and how much happiness you have already i suppose.
Goodluck.
My big worry about two adult CFer's spending much time together at all let alone dating/living together is this. You two are going to go in opposite directions in your day to day life. Both of you will come into contact with different things in the day. And no matter how much you might wash your hands and not cough near/on each other. Your going to bring home the Bactria and germs you encounter in the day. At the same time you gotta live your life and you are two adults that know the risks and know where you stand in life. Keep in mind I grew up in a home with my sister who has CF so maybe there is a case study there on the environmental factors between the two of us.
Renee Vasquez
New member
My brother also has CF, not quite the same intimate contact as a boyfriend. He's gotten sick many times and I've yet to be sick at all. So I don't know how exactly that situation works and I don't get sick from him. We obviously have the same genes, mine just seem milder than his. Now that we don't live together we are still around each other at least 2/3 days a week, I never hesitate sharing a drink with him or anything now that I think about it. We even go to all our check up appt. Together and share the same room and see the doctor at the same time. Must really make a difference what type of CF yous have.
Pretty weird that it took Hardak's post for me to connect oh yeah duh I lived with my brother for WAY longer than that boyfriend with us both having CF. I also have a cousin who is hospitalized often and I've sat with him at the bar chatting and not really thinking of the CF factor. Although he was really nice in making sure he sat about 3ft or more away from me and coughing away from me. So he was pretty aware of not trying to spread germs my way, but in all contact with him as well I've never gotten sick. Luck of the draw possibly.
Pretty weird that it took Hardak's post for me to connect oh yeah duh I lived with my brother for WAY longer than that boyfriend with us both having CF. I also have a cousin who is hospitalized often and I've sat with him at the bar chatting and not really thinking of the CF factor. Although he was really nice in making sure he sat about 3ft or more away from me and coughing away from me. So he was pretty aware of not trying to spread germs my way, but in all contact with him as well I've never gotten sick. Luck of the draw possibly.