Just thought I would introduce myself and offer my CF history.
My name is Jodi, I have CF, live in Huntington Beach CA married with 2 grown children, 1 grandson and I am 49! I must first tell you that I was not diagnosed with my CF until I was 25 and had already given birth to both of my children.
As a baby, I had pneumonia twice and failure to thrive. Docs diagnosed asthma and allergies, and by the time I was 3, symptoms disappeared. I became a chubby kid with only normal "allergic reactions" to animals and certain foods, but always had a persistant cough and very bad colds. At 8, I started taking allergy shots, which didn't help, and lasted until puberty. Through out my teen years, I developed extreme sinusitis, recurring nasal polyps, followed by 7 sinus surgeries until 18. In 1977 at 21, I married my high school sweetheart, had my daughter in 1980 and my son in 1981. It was during my 2nd pregnancy that I began to have problems. Pneumonia, weight loss during pregnancy, flu like symtoms every day, etc. My OB just thought I was having a bad pregnancy.
When my son was 6 months old, my sicknesses persisted, and I was finally referred to a Internist for tests. After no real answers, and as a last resort, he ordered a sweat test, just to eliminate one more hunch. Well, guess what, it came back positive. At the time, he scratched his head, told me I should have already been dead, and that I probably had less than a year to live! I was devastated and immediately contacted the CF Foundation for help. They referred me to my wonderful Doc's at CF Clinic - Childrens Hospital of Orange County, whom I still see. They confirmed my diagnosis with 3 more sweat tests, started me on antibiotics, started gaining weight, and most of all gave me hope that they could and would help me. My chronic cough magically disappeared and I started feeling good again for the first time in 2 years.
I was very fortunate that I had very little lung damage to that point, and no digestive problems whatsoever and never had. I was one of those people who always fought my weight and wanted to lose 15 pounds. I continued with good health, virtually having llittle problems unless I caught a cold, then it would be a course of oral antibiotics and I was good to go. When I turned 28, I was diagnosed with CFRD, and started my Insulin regimen.
I concentrated on raising my kids, owned and worked my own catering company and pretty much had a semi-normal life. I had the attitude that CF would not hold me back from anything. I had a goal to see my kids graduate from high school and see them marry. Then suddenly, my husband of 12 years left us in 1988, and I was a struggling, single parent raising my 7 & 8 year olds alone. It honestly made me more determined to be there for my kids and see them to adulthood. I was blessed that my health remained pretty good all those years, with minor occurences.
I was hesitant about dating and really didn't want to have to disclose my CF to anyone. In 1991, I met my current husband. After our 2nd date, I told him about my CF, thinking he would run away. Well, he didn't and said, "let's just see where this goes and then we will deal with it". What a guy! We fell in love, married in 1992, and merged my 2 kids with his son and became a family. WOW! Never expected this to happen in a million years. My husband , Terry, knew I had a long time dream of going back to school. So at 35, He supported my decision to return, learning computer graphics and design. Two years later, I got a great job at an Advertising Agency and my dream job came to fruition. We took family ski vacations, DisneyWorld trips, camping and motorcycle riding weekends. We crammed as much as we could into our lives. My health was cooperating, I was in a great marriage, we were having fun and life was good.
After 5 years of working long hours and deadlines, finish raising kids, and struggling off and on with my health, I finally made the decision to retire. I was requiring hospitizations & home IV's every couple months now. My boss was flexible and let me work from home, but I knew me and my determination to keep going at full speed and knew the decision I had to make. At the end of 1999, I quit to take care of me with the full support from Terry. A month later, I was diagnosed with Mycobacterium avium complex - a deadly bacterial infection. It caused so much damage in my left lung that in March 2000, I had to have a wedge resection-meaning, I had most of my left lung removed. Then 2 years of intense antibiotics, similar TB treatment with tons of oral drugs. I now test negative for Mycobacterium avium complex, but know that it could come back at anytime.
Since my surgery, I have been blessed with pretty good health. I have been on home IV's 4 times and no hospitalizations. I'm still at home taking care of myself, and I volunteer my graphic services to the CF clinic to design flyers, mailers, newletters etc.
The last five years have been a huge milestone for me. My daughter got married in May 2003, and my darling grandson was born this last Dec 15. My son is single and is successful in his work and church work. And Terry and I are living every day as if it were our last. We have been travelling as my health allows, and he works part time now to spend as much time as we can together. Life is good!
Sorry this turned out so long, but I know from experience that I get a ton of questions from other CF'ers and hopefully this will answer some ??. I guess the moral of my personal story is to always set goals for your life and not let the doom and gloom consume you. Try not to set limits on yourself or hold yourself back from what you want to do. Do what you can within reason and take care of yourself and it will come back to you ten fold.
I now have 50 to look forward to next February-keep 'um comin'!
Look forward to chatting with you all,