Hi all - new to this board

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Jodi jp
New Member

Date Joined Apr 2005
Total Posts : 11
   Posted 4/23/2005 8:39 PM (GMT -6)   
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. tongue I now have 50 to look forward to next February-keep 'um comin'!

Look forward to chatting with you all,
Thanks, Jodi

Forum Moderator

Date Joined Apr 2004
Total Posts : 23361
   Posted 4/24/2005 9:35 PM (GMT -6)   
Hi there................I don't have CF, but I read your story and had to comment. You are such an inspiration and you seem very upbeat for the all the things you had to endure. You give the word strength a whole new meaning. Thanks for sharing your "Long story" :)



Regular Member

Date Joined Apr 2005
Total Posts : 23
   Posted 4/29/2005 2:22 PM (GMT -6)   

Hi Jodi and everyone,

My name is sailgirl and I am new to this site.  I might not even belong here but I thought I would ask for some opinions and ideas.  Jodi, you give me inspiration and I am so glad that you are doing well.

Here's my story:

I will be 50 years old next month and I have never had a test to diagnose CF.  I was just researching symptoms on the internet and CF kept coming up as a topic.  I have always been kind of sickly.  I have had breathing problems ever since I can remember, and I was diagnosed with chronic bronchitis as a child of 7, and I was diagnosed with asthma when I was 36.  I have had a pneumonia 5 times, and it seems like I am always coughing.  I use inhalers, breathing tx, steroids at times, and antibiotics.  My gallbladder was removed last October because of gallstones and my doctor did a liver biopsy and said I have a fatty liver and fibrosis.  I have had cramping, constipation, diahrea, and severe sticky, thick mucus in my stools for many years.  Last July I spent a week in the hospital with a MRSA infection.  I just had sinus surgury in March for continual infection that would not go away and I had nasal polyps removed.  I am still trying to get over that because I have an infection in the septum.  I also have rhematoid arthritis, and I am being treated at present for hepatitis C because of blood transfusions about 15 years ago.  Also, this is strange but I have had many instances where during the day if I have sweated, I actually have salt deposits in my eyebrow hair!  I am thinking about asking my doctor about ordering a sweat test when I see him next month, but I just don't want to sound like a hypochondriac. Also, I have hypothyroidism which was diagnosed when I was about 24, and I was diabetic during 2 pregnancies. There is quite a bit more history, but I wont go into it.  Also, I don't have any family to ask because everyone is passed away.I just need help.

Thanks, sailgirl

Jodi jp
New Member

Date Joined Apr 2005
Total Posts : 11
   Posted 4/29/2005 4:48 PM (GMT -6)   
Hello sailgirl,

My goodness, girl, run don't walk to your Dr. and plead for a sweat test!!! I am shocked your Dr. has not ordered one yet-at least to rule CF out if nothing else. confused It makes me crazy when I hear of Drs. not diagnosing CF in older patients and instead telling them they have asthma. There is so much more proof these days that it is possible to diagnose at a later age. And it happens all the time.

If your Dr. won't order a sweat test, contact your local CF chapter, for the nearest CF clinic near you, usually near a Children's Hospital. If you haven't already, check out www.cff.org. The CF Foundation also runs the CF Services Pharmacy through the web site-they are absolutely wonderful people who make sure you have your meds through mail order and bill every kind of insurance.

Every symptom you have mentioned are ALL the classic symptoms. The biggest red flag is the salty sweat. As a kid, I can remember exercising in PE, sweating, and having a white, gritty film on my forehead after the sweat dried. Or the sweat would run down my face and I could taste salt. I thought this was normal and so I never mentioned it to anyone, only to find out later is not normal at all! I also have MRSA, colonized in my lungs. Gall bladder & sinus problems are common in CF as well.

Please keep in touch and let me know what you learn. I certainly hope that you don't have CF, but at least you can either rule it our or start the right treatments to help you. You should be using Pumozyme and TOBI aerosols and probably enzymes for your digestion. I doubt your are getting these drugs without diagnosis.

Take care and stay in touch,
Jodi :-)
Live life, Laugh often, Love more :)

Regular Member

Date Joined Apr 2005
Total Posts : 23
   Posted 4/29/2005 9:13 PM (GMT -6)   
Hi Jodi,
Thanks so much for your reply. I will ask my doctor if he will order a sweat test and I will let you know how it turns out.
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