Siblings with CF too

[mrsjenmac]

I am a 37 year-old female who was diagnosed with CF around 2 years old. My sister turns 29 tomorrow and she was diagnosed immediately, since they knew to look for it.
Being so far apart in age, we were never really able to openly talk about what we go through until we were both in our twenties. Now she is my best friend and closer to me than anyone in the world.
I find that I am usually much more concerned about her and her health than mine. I get very angry that she has to go through what she does and if I could erase CF from her I would in a heartbeat.
I thought it would be neat to hear from others who share this wonderful (blah!) trait with their siblings. Whatare your relationships like?

 

[beleache]

Hi,
I am 1 of 5 daughters. My sister Linda is the eldest , I am the 4th. in line. We were dxd 17 yrs ago, she was 50 at the time , I was 44. Sadly Linda passed away that year from breast cancer so we never did have that CF bonding time & I wish we did.. I often think about that & wish we knew years earlier..
While my sister Naomi doesn't have CF, thank God, she is extremely supportive of me.. Thank God we have one another <3
I know you must be very worried for you sister, after all you know what CF is first hand. But as you know, we cant control some things that get thrown at us with this disease.
I can only say just enjoy your sister to the fullest !! Take care <3 joni

 

[kharm]

I am 32 and was not diagnosed with CF until I was 14 (I have 1 DF508 and 1 mutation).Ihad pneumonia at3 months of age and was alwayssick and coughing as a child, but I wasmisdiagnosed with asthma and allergies by my pediatricians. Finally, I was so sick with pneumonia just before my 14th birthday that I was referred to St. Christopher's Hospital for Children in Philly where I was diagnosed. My sister was 19 and healthyat the time and had only had pnemonia once at age 16, but she was diagnosed after being tested due to my diagnosis. When we were younger, I think we both pretended we didn't have CF and we never talked about it. It took a long time, but wefinallywere able tocome to terms with it in our own ways, andwe are nowable to bond overour shared experiences with CF. WhileI have been hospitalizedcountless times with lung infections and have needed IV meds at least once a year, she has never been hospitalizedand has neverneededIV meds. However, while my lung function is almost 100% evenwhen I havepneumonia, her lung function is not nearly asgood. Also, she suffers fromrheumatoid arthritis in addition todealing with CF. I worry about her, because she only recently started doing treatmentsconsistenly to maintain her health and I feel like she has wasted time that she should have been taking care of herself and preventing her lung function from declining. Because I've always been sicker,I have been compliant withtreatmentsfor a lot longer.Recently, Ifinally convinced her to get a vest after I went for a full year without a serious infection and proved the benefits of using one since I haven't needed to be hospitalized since I startedusingmy own vest.It stinksthat we both inherited CF, but it's nice to have someone close to mewho knows firsthand what it feels like to have the disease.

 

[arcjoshua]

Thanks for posting this question and for your responses so far! I'm not in your shoes, but my children will be. I'm the father of 2 young boys and we just recently confirmed the little guy has CF just like his big brother. When my oldest was diagnosed nearly 2 years ago, I thought a lot about how isolated and lonely it must be for someone with CF because of the recommendations to avoid contact with each other to avoid the bugs you so easily give each other but that don't impact most others. I remember thinking about things like IM and video chat and other communication technology and how they might ease this isolation a little, and I hoped that these things keep evolving and improving before my son was old enough to use them. When we found out the second child was coming, I worried that he might have CF too but hoped and prayed he wouldn't. Now that we know he does have it, I've had so many thoughts cross my mind these past two weeks...most of them about fear and worry over what they will have to endure. But in all that fear, sadness, and worry, I search for little bits of hope and happiness. Even though I wish I could take this burden away from them, I have hoped that they might develop and enjoy a unique bond with each other because they will go through this together. I could see this disease they share bringing them together or pushing them apart, but I hope at least it will give them someone real they can talk to and know, touch and hug, cry with and rejoice with...who knows exactly where they've been and where they are. Your stories give me hope that my boys can help each other through this maybe more than anyone else can help them. Thank you so much for sharing your stories!

 

[Daverog75]

Hello mrsjenmac,

I was diagnosed when I was 22 and have an identical twin brother having a sibling going through the same thing you are kind of makes it a little easier because you have somebody with you who really knows what it is like especially now that he had transplant surgery 4 years ago and am going on the list the end of June.

Dave 37 w/cf

 

[mrsjenmac]

Kharm: Your relationship with your sister is the reverse of ours! My sister has been sick and hospitalized at least once a year for a long time now. I have been hospitalized once in the last 12 years. Because of that, she is on a lot more preventative treatments than I am (but probably should be). My lung function is typically 15 to 20% higher than hers. This isn't a huge difference, but for some reason she has the majority of the lung problems where I have the major digestive problems, including CFRD.

Arcjoshua: It amazes me how much has changed in the attitude towards CF relationships. When I was 8 years old, I went to a camp in New Hampshire that was for CF children only! We all lived in cabins and ate together at long picnic tables! Once a year, all the CF families in the Albany, NY region got together to attend classes and do activities together. As children, we had a blast at these! It is so sad that we can't have the face-to-face support anymore. When all of these new studies came out about how dangerous we are to each other, my first thought was: Screw the rest of the CF community, you are not telling me to stay away from my sister. My doctors really wouldn't say one way or another if we would hurt each other. My sister and I just decided that after living together for 18 years, we were either growing the same stuff or immune to each other's stuff. Any other decision, we couldn't have lived with. Your boys will have a bond that few other siblings could understand. They are very lucky to have each other!

 

[mrsjenmac]

My sister lives in New York and I live in Nevada. Even though it kills me to live so far away from her, we have the unique benifit of having 2 CF centers. We always tell each other what new meds our doctors have told us about, or new treatment plans, then we go back and ask our own doctors about the new info. It's crazy how different two doctors can think, who specialize in the same thing!

 

[xxlilmissmorrisseyxx]

I have an older brother w/CF.. he is 27 and I am 20 so there is a 7 year gap between us. We were much closer when I was younger because we both had to do the same nebs and stuff but when he started smoking and falling into the wrong crowd at age 13, he became in denial of his condition and extremely non-compliant.. needless to say, we lost that special bond we both had, the one we had always shared. It made me sad because he was my big bro and I looked up to him as my idol, like my hero. It was he who showed me how to swallow 15 enzymes in one gulp without feeling sick, he who taught me little things you wouldn't have known when you were a kid (like that the pain in my tummy was probably a big poo that was stuck) lol..
I worry about him now, years on he still tries to be the hard man and never talks about his CF, we are totally different in that way.. he seems to know anything about it, he's pretty much forgotten everything. He's not on nebs or inhalers, he takes enzymes and insulin for his diabetes.. nothing else. He smokes and hasn't been in hospital in years because he won't go near the place, even when he is really in need of treatment. We both attend different hospitals now, and I would like him to transfer to mine as the CF team here is the best in the country and he could really do with a full assessment y'know? The works. So as far as our relationship is concerned, we've drifted apart but are still there for each other when it really matters.