Just curious...question for those diagnosed as adults

[serendipity730]

Hi,
I was diagnosed with CF at birth, so it has always been a fact of life for me. Of course, what having CF meant to me changed drastically over the years. So, I guess I am just wondering what it was like to find out you had CF as an adult. Do you think you would have done things drastically differently if you had been diagnosed earlier in life (i.e. career, family.) As more and more people are being diagnosed as adults, I really find myself wondering how so many could have "slipped through the cracks" for so long? Were you sick often as a child? Did you have stomach problems? And (last question, I promise) what finally made your dr's think CF? So, if anyone who was diagnosed with CF as an adult would be willing to satisfy my curiosity, many thanks!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I was just diagnosed this year - I am 37. I have been extemely thin all my life and was diagnosed with "seasonal" asthma when I was 24 - basically I had alot of problems breathing in the summer. I didn't start having stomach problems until about age 35 and was told this was irritable bowel syndrome. The reason I was tested was by some fluke actually. My daughter has CF (diagnosed at birth) and genetic testing was done which revealed double delta F508. Noone else in the family had CF (that I was aware of) - my parents divorced when I was 5 and I never saw my biological father. He passed away this year and I went to the funeral and met a step-sister that I never knew and found out her son has CF. While talking I found out that his genetic testing showed 2 different mutations of CF - other than delta F508. So - if my step-sister from my dad had a different mutation than my daughter received from me I felt there was a chance that I might also carry a different strain. I know this is a long story - but, I have CF.

 

[anonymous]

Hi Mary,
I think your question is a very intersting one, and it is one that I think about from time to time. I was diagnosed as an adult at 19 years old and I often wonder how different it would have been to have been diagnosed as a child. I was asymptomatic until I was about 9 years old then developed a cough that never went away. I was pretty sick throughout my adolescence and had massive hemoptysis from the time I was about 15 years old. I was always thin, but don't actually have any panchreatic involvement. I think my parents probably would have babied me much more had they known I had CF, as it was there were days I was feeling terrible and they would just encourage me to 'push on and ignore it'. In some ways that was helpful, but in other ways very damaging as I lost my ability to trust myself about how I was feeling. There were times I thought I must be crazy. How can I feel so sick and have everyone, doctors included, telling me I am fine? Would I have chosen a different career? Probably. Would I still have gotten married and had a family? Yes, that was a decision I made after I was diagnosed. I do think it would have made my adolescence MUCH easier if I had known....That is a difficult time anyway, and to add on top of it having CF and not knowing it, and have your parents and doctors tell you that you are fine..... It can really mess with your head. Finally I was diagnosed at 19 when I went to a pulmonologist for hemoptysis (which I had been having for 4 years) and he did a bronchoscopy, found some really funky infections in my lungs in addition to pseudomonas and thought to do a sweat test. Thank goodness! I couldn't believe how much better I felt once diagnosed both mentally and physically. I had known all along that something was wrong and it was very validating to have it confirmed. It was a relief to know what it was! And to finally have the infections in my lungs treated was amazing. I could breathe again! So that is my story. Thanks for the interesting question! I am sure there are many more people out there with similar stories. Be well!

Kim
40w/cf

 

[anonymous]

Hi,
I was diagnosed w/ CF at 25 ( 1 month before my wedding). I was always told I had asthma & allergies. I was put on every inhaler and steriod possible, but the cough and mucus never went away. I lead a very active childhood and throughout high school I was very active, Volleyball, Basketball in junior high and a Cheerleader all through high school. Not to mention the partying and smoking I did until I found out that I had CF. I coughed a little bit, but nothing that anybody worried about. When I was about 22 I started to get very sick. I was very persistant with my doctor and they finally decided to do a sequence of tests, blood, CT scan, X-rays, and finally the sweat test. I am not sure if it was better or worse that I was diagnosed later in life. I probably would have saved much lung damage from happening if I was on the correct meds earlier and if I took better care of my body. But overall, I am extremly glad that I accomplished what I did over the years without knowing that I had CF.

Janice 26w/CF & expecting for the first time <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Mary,

My husband was diagnosed at age 42. At age 37 he was told he was a carrier (misdiagnosis). Due to absence of the vas deferens is why he was tested. He never had and still has no symptoms other than being sterile.
We have one child and are currently pregnant with the next, both through IVF with ICSI, frozen cycles.
Both of our children and myself are currently undergoing testing.
Good luck
Kathy

 

[anonymous]

Me too, chipped. HeeHee. I was normal weight the entire time until about age 28, I started putting weight on. I'm tall though. So I think it helps a bit. HeeHee. I was diagnosed at age 30. Always had respiratory probs. Just started at 34 with digestive issues. I don't feel my life would have done anything different. You know some choices I guess as a teen. But other than that I wonder if I had known as a child if I would have held myself back from things because of a disease. But I was so releived to know, because of feeling like your telling dr's the same story and noone was listening. I was sent to yet another pulmonologist and he knew right away from my xray. Becky

 

[anonymous]

Hi Mary,

In response to your question: I definitely would have done things differently had I been diagnosed at an earlier age. I have always been a very serious person and took my studies and career very seriously. I do not think I would have put half the effort had I known earlier. As it stands today, although I may be well established in my career, I do regret spending all that time and energy in my studies. My perspective has now entirely changed. My career is now secondary. Trying to live for the moment is now my number one priority, even though I do not always suceed. My dream as it stands now would be to leave the financial world for a life of travel and leisure. But this is just a dream. The reality of it, is that as you get older, you acquire more responsibilities, a mortgage, children, a relationship (marriage). There is no time for dreaming.

I think the motto of my story is "Everything in moderation" and "Seize the present day - do not dwell on the past"

Dxat35.

 

[abloedel]

I have thought WAY too much about this question...it could drive a person CRAZY. That being said, every person has some regrets, no matter what is going on in their life. To answer the question, I don't believe that I would have changed the choices I made in life, just maybe reactions to the choices. I don't think that some of things I took so seriously and thought were the "end all, be all" aspects of my life would have been such a forefront (i.e. my job, my house, my car...material things). To that end, I am now doing some of the things I've always wanted to do (going back to school, learning about making DVD's, telling people "I'm sorry", etc.)

I'm still dealing with trying not to be angry (I've had symptoms - respiratory, digestive, joints, since as long as I can remember - and knowing what I know now, SEVERAL doctors should have caught this - MANY years ago). I've ALWAYS been a positive person...and I know once I deal and get past this anger, I will be there again (ALMOST there...LOL).

I know that I could step out on the curb tomorrow and be run over by a bus, it's just difficult for me to think about the "bus" being my own body. I probably wonder the most about if I was diagnosed as an infant, would having treatment my entire life have made a differennce as to the stage I'm at today.

As I read through everyone's post, I feel "blessed" to be as healthy as I am, especially being 36. I feel like maybe I have a little "survivors' guilt". I don't want to get into an entire debate about religion, but one of my friends put it the best..."God doesn't give you anything you can't handle...I just wish He didn't trust me so much!"

My question for a lot of you (especially since many of you are not much older than my daughter - Emily by the way - who is 16 and won a scholarship to study in Japan this summer) is how have you/do you continue moving forward in your life since you've been told since you were old enough to comprehend about CF?

Take care, be well, and take time to laugh!!!!

Amy
36 w/CF

 

[anonymous]

I was just diagnosed this April; I am 20 years old. I don't think I would have done things drastically different had I known that i had CF earlier.

I tested positive as an infant at first, and then was re-tested at a CF center and they all came back inconclusive. After further bowel testing, etc. the doctor's decided i did not have it (they had not identified the gene in 1984). I have had chronic sinusitis my whole life, and was diagnosed w/ exercise enduced asthma when I was 12. I swam competitively (20+ hrs a week) for 10 years, which really helped my lungs & asthma. My asthma/allergy doctor recommended that i get retested for CF when I was about 14 years old, but for some reason we decided not to do it. I started researching CF while I was at school, and decided that I probably did have it - got retested in March, and sure enough I do have it.

It is nice (i guess) to have an answer as to why I always get sick and have to take so many pills, etc. I never really had stomach problems; I my pancreas is sufficient (or whatever the correct terimology is). My doctor recommended that I get retested a few years ago because I was having so much sinus trouble and recurrent bronchitis; I decided to get retested this year after researching CF and seeing that I had a lot of the symptoms & that there are milder forms and more people being diagnosed as adults.

 

[LINDASTAYINALIVE]

Dear Mary, Hi my name is LINDA and I have c/f. I was diagnosed at age 15, which is a good thing. The older you are at the time of diagnosis the healthier you are. When you are a very sick baby your odds aren't as good. Tell your husband to eat right and to excercise as much as possible. I am in the best shape of my life and it's all about vitamins and excercise. As far as meds less is sometimes more. You can reply to me at LINDASTAYINALIVE on this website.

 

[LINDASTAYINALIVE]

HI Chipped away, It's funny you say you don't look like a typical c/fer because I don't either! I weigh 160 lbs. I am thankful to be a thick girl. I do alot of excercise and running. I like to lift weights also. Excercise is the key to living a long life w/ c/f.

 

[anonymous]

I know this is an old post but since someone else responded to it I will as well. I was dx at 29 years old. It was the shock of my life, in some ways my very first reaction was oh thank god someone finally knows what is wrong with me, then within a few mintues I was in total denial which I stayed in up until very recently...

I am glad I didn't know as a child because I would have expected to die and for me I am pretty sure I would have not done to much with my life...

I was sick my whole life starting out at two weeks old I had pneumonia. My parents throughout my life were both working parents very absorbed in their own lives, so when I was sick I would go to the immediate care centers.because that was most convientent for them.. I always so a different doctor. I had pneumoina 28 times in my life, and many, bronchitits episodes. I have also had a few GI blocks.

My parents got divorced when I was sixteen and I was on my own after that. I had no health coverage at all so I went to hospital clinics where I saw many different doctors. None of the doctors had any interest in me because I was a charity care case.. They just wrote me a scprit for antibioitcs and sent me on my way...

Not until my pancreas failed and I was seeing a doctor in NYC with really good insurance did he start to link things together and asked about my cough.. He guessed right away because I was malabsorbing and told me he thought I had CF.. My step mom and I laughed so hard at him but we took the enzymes and went home.. My stomach got better right away after taking them.. well anyway two sweat tests later and walaaaaa

CF....I was DX with two major diseases within six month of each other Addison's disease and CF.....

I am only now starting to accept some things,but most of the time I live in denial of anything and everything related to CF.. RIght now if someone tells me I can't do something because of my health I go out of my way to prove to them that CF won't change my life...I do my vest daily and keep thinking I can't wait for the doctors to call and say they made a mistake.. I hear others cough that have CF and sometimes I say I don't cough like them, maybe they are wrong.. I don't culture stuff on a regular basis.. they must be wrong.. but they keep telling me I have CF......

I stopped questioning it and now I just try to keep going, I wake up each day ready to go foward I am a 4.0 nursing student, the president of my class, and I belong to three honor socities... but I am always waiting for the next shoe to drop.. I mean I go out on a date and I look at the guy and say how do I tell him that I am 32. I have CF, Addison's disease, Osteoporsis, Glaucoma, high blood pressure, CFRD, and a heart condition... I never call anyone back or I soon find a way to end the relationship.. to much baggage..

Somedays esp lately I feel like quitting... forgetting school.. and giving up.. and other days I feel like I can be okay...One of the most comforting things to me is to see ppl like Julie who loves her husband even with CF or my friend Jenny who is in love with her BF with CF.. it gives me hope to think some day I will have someone love me like that ... not only if I would let them.

I really have a very deep love for life most days, some days I wish I wouldn't wake up and the thought of facing these treatments and sickness for the rest of my life doesn't appeal to me.. and that is when I take care of myself for the ppl who love me..

Sorry off topic sort of.

Jennifer 32 CF