Advice please-girlfriend with CF

[FallingForHer]

Not sure if this is the correct place to post this, but feel free to either address it here or redirect me (with url) to the correct page and I can repost on there, thank you.

I met my gf at an online dating site and after emailing and chatting for a few weeks we started going out on a few dates. On the first date she was very open and explained (briefly) that she had CFwhen I asked about her cough. At the time I honestly didn't know anything about the disease, but wanted to learn more as time went on. I did small amounts of google research and talked with a buddy who knows a lot about the disease and explained a good part of it to me. Things rolled on for us and we have been officially bf/gf (yay!) for a couple weeks now. *I am 25 and she is 24*

We are both very close with our families (I have met hers) and I want her to meet mine. So I gave them the heads up that we were dating and I want to have them meet her when we get the chance. After talking a bit I also explained that she has CF and the reaction out of them was immediate concern for me and for her. Particularly for me and wanting to be sure I understand the severity of the disorder. Their reactions freaked me out a bit and I have spent a lot more time doing research into CF and the symptoms/treatments/life impact. As my name indicates I am quickly falling for this girl, but after doing more research I am getting scared shitless (pardon the language) about the impact that her CF (and my Type 1 diabetes)could have for us, possible children (not sure if I am a CF carrier), daily life, adventures, and when/if it will kill her...everything I have found says that those who are afflicted and treated from a young age (as she was), can expect to live to 30s, 40s, or even 50s.

I know a lot of it depends upon treatment and lifestyle to maintain health, but I am scared about it all. I want to ask her more about her CF, but I don't want to freak her out about my fears. Please I need some advice.

Thank you,
Falling

 

[believingjesus]

Dear FallingForHer - that name says it all. I loved reading your story and I can tell you are falling in love and that is so sweet! You have to understand that your family is not in love with her and just looking at her disease, not her. She must be wonderful for you to fall in love so quickly and you must have a connection higher than just physical for you to care for her so much already. It is good for you to know all about the disease by reading up on it and asking your friend about it because if you stay with her, and I honestly hope you do because of how you feel about her, you will need to be strong and able to handle everything. I understand you are "scared shitless", I am there with you in that but I love my son so deeply and would move mountains for him if I knew how and from what I read I believe you do love her already. She would probably welcome having someone to talk to about CF that she felt loved her - like you. People with CF do live long happy lives for the most part, they just have to push forward and fight for their health and be happy in every single moment and take them all a moment at a time. I loved reading your story! It makes me have faith in true love. And as for the fact that you already are falling for her, my grandma and grandpa fell in love quickly too. My grandma got married to him at 17 years of age, she is now 93 and still going strong, he passed away in 2007 but they were married for 68 years!!! and they fell in love and married within a month! Amazing.

 

[ethan508]

The concern your family has is well placed and having your eyes wide open and a dose of realism is a very good thing when dating. Before you get real serious you need spend some time in introspection deciding if you are up for the challenges that CF will throw at you. I know this was something that my wife and sisters-in-law had to work through a bit before deciding to marry into my family.

If you are religious person (or are inclined to become religious), I would spend some time in a quiet place praying and pondering. Ask God if your continued courtship is the path that He wants for you. Getting an answer to your prayers early on will help you overcome the challenges that you will face as a couple. (If you aren't religious I guess you have to decide if this is a life path you want for yourself). With your personal ponderings, have some serious talks with your GF about your general life goals and what you will do if CF impacts those goals. Optimism is fine, but also include realism. Discuss openly your GF’s current health (maybe go with her to a clinic visit). Discuss your combined ability to find good careers that will provide decent income and health care. Discuss how you could best deal with failing health and hospitalizations. On the plus side, this type of communication will be vital in a serious relationship anyway, so you might as well get practice with serious communication early on. If you need some help developing these types of communications skills there might be a pre-marital or couples counseling that can help.

A successful relationship with a person with CF will require sacrifices (but so will a successful relationship with anyone). I know there are many sacrifices my wife has made for me (just think of the things we could do if I wasn't dropping $$$$ on deductibles and co-pays). Despite the sacrifice my wife makes, I know she still loves me and we have been able to build a very happy life together.

 

[ethan508]

To answer your question better, I should ask, is there anything in particular you are scared about? What aspects of the disease cause you the most concern or would be more challenging for you to face?

 

[Printer]

Falling:

First, STOP Googling CF, there is no place with as much out-of-date information as there. Second, attend one of her clinic visits and discuss this issue with her CF SPECIALIST. There you will get informed answers to your questions.

I am 75 years of age and recently celebrated our 52nd Wedding Anniversary.

Bill

 

[JustaCFmom]

I agree with the good advice here. Talk to her doctor & get your questions answered. Maybe get the number from your GF (or, maybe better, from a friend or family member?). You might have questions you aren't comfortable asking in front of her.

There is such a large spectrum. I guess kind of like diabetes. It sounds so scary to read about, but each person is their own story.

My kids have perfectly normal lung functions and, when they die, they have as good a chance that their death won't be due to their CF as that it will.

Good luck!!

 

[GoryLori]

Let your heart lead you, not the internet.
I met my husband online 18 years ago when the internet was very scary and brand new..we just celebrated 17 years of love and CF. Don't believe most of what you read and question everything.
Go with your heart....
My husband has been by my ICU bed when I was intubated, on the vent and dying. He prayed for Gods will to be done and slowly, I recovered. That last near dying experience was 8 years ago and we've had a few scary issues since then, but it's love of each other and of our relationship with God, that keeps the spark lit. You say you are scared....Have you spent any time on your knees praying?

 

[believingjesus]

I agree with Lori. You can find out everything you want to know about the disease and talk to all her doctors and find out what to expect but if your heart loves her and you decide against being with her because of her disease, how can your heart let that go? You will live your life wanting who you didn't decide to stay with. There is nothing greater than love and it doesn't happen every day.

 

[cassidy96]

I am a 49 yr old double lung survivor for 18 yrs. If you care about her don't let the disease dictate your life. She is a human who needs love and compassion and maybe that extra care. Many people have left my life because they were afraid of the future please don't let that stopping you in your decisions. Yes you have the right to be scared this is not an easy disease to have but the more support she has the better she's gonna feel and be able to carry on this long and vicious cycle this disease produces. I'm living with it now and can't believe how bad it can really be but mine are my stomach issues which I know what's gonna happen but I'm a fighter and not giving up. Just like you if she's worth it to you then go for it and make her happy and just be understandable wish you both well

 

[zaj1139]

Just a FYI, one of my fears for my grandson is that he will not find someone to love him when he gets older. That because of CF people may not want to bother. I pray that will not be the case as he is amazing.

 

[Aboveallislove]

You’ve gotten some really great advise already. One thing I’m wondering and hoping those with CF might be able to share from their perspective: How much would you want to know regarding his thoughts, and fears, etc. at this point?

I also have some thoughts, which in many ways mirror what you’ve already heard, but from a different angle.

First, as a mom of a son with CF, I worry that CF will be a "deal breaker" when he is older and hopes to marry. I dread thinking of the day his heart is broken. But that’s a mom’s heart. And CF is a legitimate concern for a potential spouse to consider. What you need to do is figure out if it is a "deal breaker," for you. Love or not. It could be. So for instance, I have two dear friends. The younger sister while courting her now husband had to sort out with him the her potential infertility because of medical condition. They loved each other, but it was something of grave concern. They ended up marrying and were blessed with 4 kids. The older sister I know has cut off "falling in love" type relationships if she ever saw the man have one drink too many because their father was a functioning alcoholic and she knew she didn’t want to volunteer for that. But when she married the man of her dreams they ended up unable to have children even though they were both 1 of 7 kids and wanted so much to have a large family. The younger sister had the cross of knowing there was an issue of concern. The older ran (wisely!) from situations that she knew she did not want to live with; but then ended up with another heavy, very heavy and unexpected cross. (Another DF broke off a long-term relationship with the "love of her life" because he didn't want children; she later married her husband who she loves dearly and they were unable to have children.)

So is it a deal breaker, is what you need to figure out? But in doing so, you also need to have realistic view of what it means. As Printer said the internet is very outdated and also the medicine is changing daily. One mom who has CF who I’ve chatted with here and there is married with 4 kids. Her health was declining until a new drug came out that has been a miracle drug for her. In 10 years, they well could be able to splice out the bad gene and insert a new one. It doesn’t mean CF is nothing to be concerned with, but in figuring it out, get the correct info.


It really really sucks that you have to have that consideration taint the wonderful feeling of falling in love. In some ways, those who have kids who were diagnosed at a couple weeks old can relate–we didn’t get to just enjoy the bliss of being a new parent and that unfathomable love we felt. It was tinged with pain and worry.


The final thing I wanted to add was that I was thinking about my nephew as I read your post. He is 25. And I thought "what would I tell him if he asked me the question?" since I love him so dearly and wouldn’t want to see him hurt. I would say what I’ve said to you...it’s a very serious thing to consider and I would lay out what CF means, but never once thinking it should be a deal breaker for my beloved nephew or tell him he shouldn't continue in the relationship. And I would also ask him about her and what she means. Only your heart can tell you the later and sometimes your heart tells you that what you thought was a "deal breakers"
is merely a hiccup.

 

[Jennyvb17]

Hi,
just thought I'd put my 2 cents in.

Im a 32 year old female with cf, and single, so I might have a decent perspective on how she might feel.
just talk to her. Have an open and honest discussion. Ask your questions, tell her it scares you.
The thing I hate most is when guys try to pretend like the worst won't happen to us.
Technically speaking you have a good chance of sitting in hospital rooms once a year, it's not scary, it's routine care. She will probably also expect to be on disability and unable to work at some point, and then eventually have a transplant.
Personally I have an expectation of how far away that is. She probably does too.
You need to decide if it's something you can deal with, but you certainly don't have to decide now!
Give it time, see how she deals with it, how her family deals with it. Even if you end up together forever- hopefully her family is always there to support you both.

In in short talk to her. She knows.

 

[JakeS]

Hi, some great advice so far. I am a 39 yr old w/ cf. I would advise talking to your girlfriend as well. This disease is so different for each and every one of us. Your girlfriend, her doctor, and her family are the only ones that can testify for her. With that said expect that she will deal with this disease every day, for the rest of her life. Challenges will come up, and they will be met. A strong disposition and a little luck, and a supportive care network can be the difference between good and bad health. A healthy lifestyle is essential. Hope this helps.

 

[Patti Rowland]

girlfriend with CF

Not sure if this is the correct place to post this, but feel free to either address it here or redirect me (with url) to the correct page and I can repost on there, thank you.

I met my gf at an online dating site and after emailing and chatting for a few weeks we started going out on a few dates. On the first date she was very open and explained (briefly) that she had CFwhen I asked about her cough. At the time I honestly didn't know anything about the disease, but wanted to learn more as time went on. I did small amounts of google research and talked with a buddy who knows a lot about the disease and explained a good part of it to me. Things rolled on for us and we have been officially bf/gf (yay!) for a couple weeks now. *I am 25 and she is 24*

We are both very close with our families (I have met hers) and I want her to meet mine. So I gave them the heads up that we were dating and I want to have them meet her when we get the chance. After talking a bit I also explained that she has CF and the reaction out of them was immediate concern for me and for her. Particularly for me and wanting to be sure I understand the severity of the disorder. Their reactions freaked me out a bit and I have spent a lot more time doing research into CF and the symptoms/treatments/life impact. As my name indicates I am quickly falling for this girl, but after doing more research I am getting scared shitless (pardon the language) about the impact that her CF (and my Type 1 diabetes)could have for us, possible children (not sure if I am a CF carrier), daily life, adventures, and when/if it will kill her...everything I have found says that those who are afflicted and treated from a young age (as she was), can expect to live to 30s, 40s, or even 50s.

I know a lot of it depends upon treatment and lifestyle to maintain health, but I am scared about it all. I want to ask her more about her CF, but I don't want to freak her out about my fears. Please I need some advice.

Thank you,
Falling

I don't mean this unkind, but your girlfriend's CF will probably be "cured" a lot sooner than your type 1 diabetes. Make sure what you are reading and hearing about CF is updated information because there are constant new and exciting breakthroughs with this disease all the time. Its good to walk into any potentially serious relationship with all the facts, I just hope they are up to date facts. I wish you both all the best.

 

[FallingForHer]

Thank you everyone for your fast and helpful replies. I've been reading them as they came up this past week and have been trying to reflect more on it. The overall 'answer' I came to was that I need to talk to her more about it, not push for answers, but to ask slowly over time and learn more about her CF and what it will bring for us in the future. I suppose to answer the predominate question you all had for me, the thing that scares me most is that we will fall in love, get married, and either after having a few children (we both want them), her CF may kill her and also the chance that our children will inherit the disease and I have to live through their pain as well. No, I will not run away and 'assume' that this is going to happen and stop the relationship. BUT it is a valid concern I think and the thing that is weighing on my mind the most, not sure I could deal with seeing someone I grow to love so dearly go through that decline and loose them in the end.

Like I said, I will slowly ask more questions and become more aware of her particular type, and if she is willing, I will go to some appointments and talk to her doctor as well (again if she is fine with that).

Aboveallislove made a good statement;
"You’ve gotten some really great advise already. One thing I’m wondering and hoping those with CF might be able to share from their perspective: How much would you want to know regarding his thoughts, and fears, etc. at this point?"

For the younger women out there with CF, could you help me out and let me know how much you would want to know about my thoughts, fears, concerns, etc? Lord willing that all things for us continue to grow and I can be the rock to support her through it all, but I need to ask and know what I would be supporting. Without scaring her in turn about my own concerns and fears.

 

[LittleLab4CF]

All parents tend to be probative when they suspect their adult child is introducing a potential mate. In other words they were checking her out to see if she met their standards for their boy. I think this might be more about a deep fear that you could be in love with a person whose challenges before her could change your life in ways nobody can predict. A known, unknown, is the basis of all irrational fear and this one's loaded with unknown dynamite. My advice is to follow your heart but talk about everything thing on each other's mind. You can't begin to solve the issues until you've committed to a relationship but you can at least understand the issues out there. And you may be surprised at what is on each other's mind. Or what is not.

I recently watched a fundraising video to make a CF documentary on this site. The very professional promo video explains that his documentary is about a severe case in England where the young woman died before a lung donor became available. His proposed documentary is focused on raising awareness in England to encourage more organ donors. I don't believe there is any real benefit for you to watch the short video because CF has both a broad spectrum of severity and CF now has a genetic medicine. It fully treats 3-4% of CFers but how many diseases have a genetic medicine of any kind? CF's morbidity, the rate illnesses she catches or develop are all dependent upon the correction of a single gene. With better medicine and better medicines available and in trials, CF's morbidity and mortality are moving targets. What was predicted for her lifespan 24 years ago is being pushed higher and in years and quality of life.

What caught my attention in the video short was the statement 'cystic fibrosis is a disease that destroys the lungs'. I realize that with the noble purpose of increasing organ donors, focusing on this most serious CF presentation is logical. CF can be limited to the pancreas, which totally screws with the GI tract including the gallbladder. For others, the areas where CF is making thick, sticky mucus are all endocrine glands and the lungs. Again what's affected and how badly defines the patient in many ways. In that wide spectrum of CF, severity and penetration combine to further complicate exactly what affects of CF a particular person has. Some die young. Some live to around age 50. For some reason this age grouping is not well understood. Then there's the old fogie's of CF who are well in the range of an average lifespan. The reality of life with a CFer is a little like adopting a child. All of a sudden your life will become more busy. A lot depends on the skills and talents of each person but she will appreciate whatever you can offload from the medical management she must have.


I am a second generation CFer. My first relationship with a CFer was my father. His diagnosis came from a post mortem. The 48 years and 16 days he was alive, he was happy, strong and a father other kids wished they had. I never had to ask my mother if she was happy but I did, when he was alive and when she was remarried. She couldn't imagine life any other way, her marriage, three kids and a something I can only describe as a dance, they moved in step with each other in all matters, even resolving conflict. When they would walk down the street, they moved arm in arm with something intangible but other people noticed. I would love to have my father live to be 80 or more but we felt that he was an intense, wired to high voltage man and he just burned up. We were happy he was at rest. My point is from every measure, it was a good life for our family. My father either savored life or was a would class actor.

My wife and I officially retired April 1, which puts us at 66 & 65 respectively. I was diagnosed at 52 which was about 20 years too late for my significant other to back out. I've said this too often but my life has been one grand adventure. It's almost embarrassing because I am wired to be happy, everyone and everything is fascinating. When we married, we had certain goals. We started a business, tried to have kids and have our joint and pet projects.

We were scientists. She was a geophysicist, and I was confused. My field, genetics, was in desperate need of new instrumentation. In pursuit of advances in reading the contents of chromosomes I learned a whole lot of engineering. We did start a business making custom reprogrammable robotic systems. My wife is detail oriented. Behind the scenes, she ensured we and all our employees had some premium health insurance. Beyond that we worked out problems that evaded our best engineers.

It seems like I had boundless energy all of my life. Then in a few months, I went from 90 hour work weeks to barely the 36 hour required minimum. By January 2001 I was in bed 18 hours a day and, fortunately my wife was planning ahead. She reentered the job market in 1998 just as the Y2K scare was heating up. When I couldn't work, she had a decent job with quality health insurance.

She was attracted to the home financial management from the very beginning. I could have done it but her sense for detail has been invaluable. All the medical insurance payments and pay outs, making sure we're secure now that our income is fixed. We worked out the final steps that resulted in my pancreatitis and subsequent CF diagnosis the same way we solved technological conundrums.

Most of the time I take care of my medical appointments, prescriptions and of course CF research. When I am really sick, my wife drives me and takes care of any medical forms and such. For many chronic diseases, life goes on just fine for an indeterminate length of time. Usually for unknown reasons we get flare ups of health issues, we generally call them flares. It may start with aspirating some stomach contents or mucus from post nasal drip that's got some virus or bacteria. I can go from fine to pneumonia in 30 hours. When the pancreas is attacked by CF's thick non moving digestive enzymes, the hormone gastrin can be produced in wild excess. Gastrin is a super hormone that turns on the digestive system even when there's no food. This makes for GERD, gastritis, IBS, Crone's disease, choleostsatis and a generally delicate tummy. She's going to have GI issues, rarely serious GI issues.

If there is anything to be afraid of, it is stress. Being the spouse of a person with a chronic disease ultimately becomes the caregiver for their spouse. Being the caregiver for a family member ranks at the top of stressful jobs or situations. She knows that a relationship is going to involve reliance on and stress for her spouse. If I am even close to correct, all of this will not come to be. You may be the one hit on your bike or having a stroke resulting from vascular flaw at birth.

Or you may be like us and grow old together,

LL

 

[Aboveallislove]

Any thoughts married ladies? Just wanted to bump you FallingForHer in case anyone missed your follow-up about what they might like to know re your thoughts, etc. You also, might want to start another thread with "Seeking Advise From Married Women with CF" and then just give a quick summary and also link to this thread so that if someone missed this they might see that.

 

[ethan508]

BUT it is a valid concern I think and the thing that is weighing on my mind the most, not sure I could deal with seeing someone I grow to love so dearly go through that decline and loose them in the end.

^This is the risk you will have no matter who you end up loving in life (including your children, parents, and friends). Love means taking the risk that you will watch that person pass on (half the members of any lifelong couple will experience this). Love means giving someone the power to hurt you deeper than anything you can imagine. BUT, in doing so you will also experience life's greatest joys. Joys that can't truly be understood without that first sacrifice of giving your entire heart over to someone else. It is a very tall order. I'm not sure I really grasped it until had been married for a while, and I still have a lot to learn on the subject. I hope you will find that you have the capability to love her, despite the risk of heartbreak.

That being said, a slow measured approach seems wise.

 

[jaimers]

thanks for bumping this AboveAll, I had missed the reply/follow up questions! and sorry this got so long! ;D

I'm married (2.5 years) and have CF. my husband and I knew of each other for about 5 years before we even started dating and had circles of friends that overlapped in many places. we were not close, wouldn't put us as anything beyond vague acquaintances until i ended up moving in with my best friend who happened to live across the street from him. Our two houses hung out all the time and we got to know each other really well as friends--neither of us was remotely interested in the other romantically and he was actually dating one of our mutual friends! then one day about a year later i kind of realized i had a crush on him and a few months later he asked me out. we got engaged 3 months after our first official date and were married 6 months after that. it sounds fast because it was but we were really close friends before we even started dating so it was just a " can this work romantically" sort of evaluation. All of that to say, he knew about CF before we started dating and so when we started dating, knowing that it was pretty serious pretty quickly, he had to decide if CF was a deal breaker for him. He decided that though he knew it could be really hard and ultimately could mean an early death for me, life with me was better than life without me. It sounds so cliche but you have no guarantee that if you end up with someone else that is totally healthy that something terrible can't or won't happen down the road with them too. My parents have been married for 35 years and have had many health issues either between one of them or me over the years. My dad was diagnosed with Stage 4 lung cancer last year and is basically now on chemo forever. That's a really hard road to walk with someone but my mom is right there beside him and always has been.
I had tried online dating a couple of times and told one of the guys i met through that about CF and then never heard from him again which was hard. There is so much more to me as a person than CF. But CF is no small thing and is currently an ultimately terminal disease. I don't know where your girlfriend's health is currently, if it's stable, etc. but from the way you talk it sounds as if it is pretty stable at the moment. As someone else mentioned she will have routine doctors appointments, probably some routine and some not so routine hospitalizations, and a regular treatment regimine.
It sounds like maybe you wonder how much would the day to day be affected by CF? honestly she's been doing the daily maintenance treatments her whole life and most likely they are as normal a part of her day as brushing her teeth or you taking your blood sugar. It's just what you do to keep moving forward with life.
When we got married and my husband saw first hand everything that I do daily (vest, nebulizers, medications) he was a little overwhelmed and tended to hover around and kind of try to coddle me. i put an end to that quickly and he got used ot everything and it's now just part of the routine for him too. He hates going to the doctor so the first time he went with me to an appointment when we were dating was totally overwhelming for him but i really appreciated the fact that he had asked me a lot of questions before hand and had obviously been reading about CF because he asked the doctor really good questions! The first hospitalization was hard for him too, but again, just part of the learning curve. now he's fine with it an used to it.
Marriage generally is really good and fun but also really hard at times for anyone, CF or not. Are yall at a place where you're talking about marriage? If you aren't I would continue asking questions and learning about CF from your g/f but perhaps not share your deepest fears of what a future with her could look like because of CF. If you have talked about getting married and moving forward towards that very serious commitment I would then talk to her more candidly about your fears and concerns for the future. If you two aren't at a place where you're talking about moving towards marriage as a couple and you discuss all of these fears with her and then things don't work out, she may think the only reason things didn't work was CF. That's really really hard to hear that something totally outside of your control is an ultimate deal breaker. I don't say that to guilt you into something--you may evaluate and really feel that you aren't able to handle CF. Better to decide that now than like the story on another recent thread where the guy left after 8 years. But you need to realize that something hard will probably come up with anyone you marry. I really think love is a choice. sure right now it's accompanied by lots of nice feelings that, if yall do get married, won't ever totally go away but it's not all lovely feelings all the time. some days are really crappy and you're not going to feel like you love the other person at all but you don't leave because that day was hard. you choose to love them and keep moving forward.
i think you're asking good questions and it speaks very highly of you that you sought out a place like this to talk to people who know first hand the road you're traveling. I really think you're probably stronger and able to handle more than you realize and that CF is less dramatic day to day than it may seem right now when you're first learning.

Edited to add: i meant to say also that if you have questions and would like to ask someone in your specific situation you can ask my husband! Private message me and I'll pass the message along

 

[Beccamom]

I have CF and I have been married to my husband for nearly 17 years. We have a 15 year old and a 13 year old daughters. They are CF carriers, but one has all the CF symptoms and my severe mutation while my other daughter has my less severe mutataion and no symptoms. Get to know this girl. Be with her through a hospital stay. Go to CF clinic. You can try a relationship with a cyster before marrying and committing your life to a cyster. My husband cannot really handle illness. I have learned to lean on my parents and friends and try to lean on him less. I wish I had a husband who was more supportive. He attends CF clinic, and helps with the home and kids when I am sick, and is fully supportive of me working or not working. However, when I am sick he is depressed when I need him to be there for me emotionally. Have fun dating. CF should not be a deciding factor, on dating but how you work as a team with your girlfriend during the bad, sick times will tell you if this is a team you want to commit to long term.