I was diagnosed with CF last year at age 54. Obviously I have a recessive gene, as I have mild symptoms & minor lung damage (25%), compared to many others with CF. I tell people I have a “bent CF gene”. If people know about CF, when I tell them I have it, they look at me like I am from MARS. No way – that is a child’s disease, & I shouldn’t be alive. If not, then I try to educate them, but as there are so few of us that are older, I am still looked at like a freak. I am still trying to get my feelings about this late diagnosis and being among the few sorted out. I hope my story will help young people to see there are long-term possibilities. I have probably seen over 50 Dr.’s all over the world, in my lifetime because of my sinus problems, but it wasn’t until I saw an allergist last year, who had worked in an office next to a University CF clinic, that I was diagnosed. She asked if anyone had mentioned CF as the cause of all my problems. I said no, but I am old & also overweight & how could I have CF? She said that many older people with CF are heavy. She had a blood test done - three weeks later I was told I had CF. Through testing I have discovered I carry staph, strep, pseudomonas & a fungus. I have severe sinus problems & have nasal polyps. Doctors always said it was allergies, but when tested, they couldn’t pinpoint my problem & said I was a little allergic to everything. I have gone through many dietary & living changes for the “supposed allergies” and courses of anti allergy shots. I have had over 20 operations on my poor little nose & sinuses. I have had no sense of smell since I was about 20. The family history goes that my great grandmother came to visit my mother when I was one week old & I was already coughing. She said many in her family had the same thick mucus which caused coughing & throat clearing. She called it gutar. She had her own cure & gave me a half a teaspoon of whiskey, which shocked my mother, but did calm the cough. (I now use honey) I was always sickly as a child, colds, earache, headache, bronchitis, cough, pneumonia. At that time the Dr.’s always diagnosed me with “weak lungs” & maybe I would grow out of it! If it had not have been for penicillin I wouldn’t have lived past 3 years old. I was given penicillin so much as a child that I became allergic to it in my teens. Lucky for me, by then they had developed antibiotics. I never was allowed out of the house without being bundled up & scarf over my head. I looked like a little babushka doll. My father was a Col. in the Army so I saw many different military doctors as well as local ones. I have also lived in different countries with different climates when I was growing up. I have always been very aware & insightful about my health. If I felt any sort of cold or sinus problem coming on, I would go to bed & take antibiotics. Wherever I moved, I always had an EENT specialist that was aware that I got sick easily and they always supplied me with a full dose of antibiotics to have on hand. I could be fine on Friday & pneumonia by Sunday. I became very aware of what I could and couldn’t do. I got married at twenty but never had any children. My husband & I lived in Canada for 2 years & then did the European travel thing & lived in a Volkswagen camper for 18 months in the early 70’s. I was very careful on the trip, but I did get pneumonia in Istanbul Turkey. In 1980 we left the US & spent time in Mexico & then lived in Europe. Part of the time we traveled & lived in our Volkswagen. We spent 3 seasons skiing in Europe, (rented apartments), & 3 summers on beaches (in camper). We lived in Germany, France, Italy, Portugal, and Greece. We then went to Geneva Switzerland where I worked for the UN for 5 years. I have traveled in Egypt & across North Africa. I have had heat stroke several times, but understand now that is a result of my CF. In 1990 we returned to the US. I took Doxycycline everyday from 1994-1999 to help control my sinus infections. I am now under the care of the adult CF clinic at the University Hospital. In many way’s I am thankful that I & my family didn’t know I had CF. I know, my husband & I, would have curtailed our lifestyle and I wouldn’t have done a quarter of what we did. Tips: · I have started using a hand sanitizer product in addition to washing my hands frequently. I have it at work (everyone now uses it & the cold swap rate is way down. It is available in small pocket size that I carry & use frequently. Especially in public places like grocery stores, clothing stores, restaurants, using hand railings and washrooms. I feel that I have not been as susceptible to every little bug that comes along.· I always look for clothes with pockets for my tissues. If it doesn’t have a pocket, I don’t buy it.· After showering, I always dry my hair thoroughly before leaving the bathroom. I always use q-tips to dry my ears.· I run an air purifier, ionizer in my bedroom during the day, but not while I sleep. Personally, I feel better in a dryer colder climate. When we lived in the mountains & I skied & I felt the best. I think the exercise & fresh air helped me. When the air is too warm the lining in my nose & throat swells, & I have difficulty breathing & I cough more. When it is damp, I get sick & my infections increase. I was aware that really cold air hurt my lungs, so when skiing I always had a scarf or something over my nose & mouth & my ears are always covered. I seem to need lots of sunlight, which helps me mentally & physically. So skiing in the winter helped me in that aspect also. Air conditioning also increases the coughing; otherwise I would live in the desert someplace. I hope to keep working for a few more years, but when we retire, I want to find a healthier place to live. I wonder about CF people living in Colorado or Montana. If you are out there, do think it is better? Also if there are others that are over 50 with similar diagnosis as mine I would like to hear from you also.
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CF at 55 & going strong!
- Thread starter anonymous
- Start date
Wow, your story is amazing! I am not over 50, but from my drs say I am definitely going to be here at least that long! I also have a mild case of CF. I am 31 now. I was sick alot like you as a child also with the pneumonias and my sinuses are trash also! I have more problems with my sinuses and nasal drips and all that then I do with my lungs! It is terrible! But I am on some nose sprays and antibiotics and such. I have had 4 kids and for the most part I don't even tell people I have CF because I don't want them to think it is a mild disease. I had a sister who died from the disease at the age of 20. God bless you and keep up the good work!
Thank you so much for sharing your amazing story! How wonderful it is to hear about your travels. I have two daughters with CF. Being military we too have had the oppotunity to live in different places. We took the big plunge back in 97 and volunteered for an overseas assignment. We talked with their doctors, got letters, did research on CF clinics so that we would be prepared for the ultimate question if he got selected for the assignment. He did and we were ready. I have to admit it helped that he was in the medical field because we were told that had he not been we probably wouldn't have been able to go. We spent three and a half wonderful years in Germany. Our oldest (who also seems to be affected most) was able to experience independence while we were there. CF is treated a little differently there and they don't use CPT, they use deep cycles of breathing along with the flutter and regular visits with your physiotherapist. With that type of PT she didn't have to rely on anyone except herself. They strive for more independence it seems. She was able to go on week long field trips with her class to other countries without us. She has some wonderful memories for just being 16. Her favorite was her trip to Crete, the only one in our family to have gone to Greece. When we returned stateside she lost that independence. She uses a percussor now, the vest she says makes her feel like she is being squished to death and she can't breathe. She tried it in the hospital once and isn't interested in trying it again. But I"m getting of the topic. YOU! I am hearing about more adults these days being diagnosed with CF. My husband is an ENT PA and really looks into things like what you described you went through. He is always trying to be sure that the ENT's he's working with look deeper as well. Being military though makes that easier than in the civilian world. You have access to the patients whole medical record not just the file an ENT office has. But here's a question I have. Has being diagnosed helped? I mean at 55, or say even 40 I guess, if you are basically doing really well, do you want to know? I mean "well" by not having chronic pulmonary problems. I am just curious. Knowing what I know and the worries that go along with just being a parent of 2/cfers, I wondered. Thanks for your story, I can't wait to show my husband. Liza
In answer to your question about being diagnosed so late in life. It has it's positves & negatives. I now understand why some things have happend to me, like the heat strokes, cronic sickness, depression & fatigue. It is good to know that I had a reason for being so careful about my health all these years and not always feeling well. I am not just a complainer, and it puts many things in perspective. Now I have more fear about my condition deteriorating because of my age. My husband is more understaning and helps out around the house & garden more. As well as others in the family who are concerned about my health.However, I am sure there are many things that I did do in my life, that would not have happened, as I would have been too concerned about my health. Now my husband is too undertanding, & seems to be babying me more, asking if I slept OK and have I been taking my medicine. I know my life would have been VERY different! Weighing both sides, I don't think knowing would have helped me heath wise, so I am glad I did not know until now!
I am so glad to read your story. I will be 41 in a couple of months. I am not your age, but I have felt so many of the same things. I was diagnosed at 35. I have felt lost at sea when dealing with CF clinicians and doctors. I was so devasted when I was diagnosed. I had dealth with CF for the past 10 years because I have a son with cf. Amazingly the same doctors that were treating my son for CF were treating ME for " severe uncontrollable" asthma. My CF was only diagnosed after moving to a new state and transferring my records to a new pulmo. What? I cant have cf. There must be some mistake. My son does, not me. My daughter is a carrier, but I dont have cf. I am a carrier. I am sorry ma'am but you do. These genetic profiles state it unrefutably. Yes, your son has it, your daughter is a carrier but, yes indeed, you do have cystic fibrosis. We need you to have a sweat test for your file. But it is just a formality. Yes the sweat test is positive. I dont understand? I had one when my son was diagnosed, it was negative. We have received a copy of the records from that hospital and indeed it was positive. For some reson they reported the results to you incorrectly. So began my awareness of my disease. Sputum cultures revealed that I was colonized with pseudomonas and MRSA. Within a year I had received a port, and my medicine cabinet size had tripled with medications that I thought I would only give my son. I was now needing IV meds to control my infections every 3-4 months. Slowly, I began to accept this disease. The medical community did not do much to assist me with this process. Everytime I went to CF clinic or needed to go to the ER for respiratory issues, I was treated like some kind of oddity. I was overweight, my lungs were relatively clear unless I didnt take my meds. I overheard the docs at the ER once, "She obviously doesnt have CF, look at how fat she is! She must have psycho-social issues related to her sons illness." WHen I went to clinic, I felt as if they blew me off. I wasnt "sick" enough to be there. They didnt listen to me about anything. One time, I went into clinic feeling really horrid and coughing and unable to catch my breath. He said I was having anxiety attacks and gave me cough medicine. I was forced to go to the ER a couple of days later and was told that I had pneumonia! Needless to say, I no longer see that CF doc. Obviously he is only interested in treating very sick traditionally diagnosed patients. I have a wonderful doctor now that is not a pulmo but is willing to work with me and is not afraid to consult with pulmo docs when I have more sever issues and illness. Thankfully, most of the time, I am fine. I imagine that I will live FOREVER!! Not really, but I do live a relatively normal life. My lungs are scarred and my pf's run in the 60's but that is mighty fine for someone my age! As long as I take my meds and watch my lung symptoms, I can avoid most major issues. The only thing that affects me on a regular basis is that due to all the scarring in my lungs, I have poor oxygen transfer and must wear o2 at night. If I am sick, I wear o2 on a prn basis. But, I feel great and I plan to be going strong when I am 80!