Since several people have asked me at different times about being such an "old" CFer (and I use the word "old" with an enormous amount of pride!), I thought I'd make this a new topic so you wouldn't have to search through other topics to find my story. I live in Arizona, and I was not technically diagnosed with CF until in I was in my early forties. I only have lung issues with my CF (well, except for GERD). I have had chronic and serious lung problems since early childhood, but the standard sweat test for CF always came back negative (I've had about 10-15 in my lifetime at multiple institutions). I grew up in Michigan, moving to Arizona in my early 20's. Still, the doctors always treated me as if I had CF and used the same medications, airway clearance, etc. However, when the vest and Pulmozyme became available, I was not able to get them through insurance because insurance would only cover them for someone with a CF diagnosis. And I couldn't afford them on my own, so I didn't have access to either.
I got very ill in my forties, ending up on a vent in the hospital for awhile. By that time the gene had been identified, and blood tests were available for diagnosis, and that is when I was officially diagnosed. I have a mutation, but have no idea which one. I could probably look it up in my medical charts if someone thinks that info would help them. The only thing that the diagnosis changed is that the insurance company magically began covering Pulmozyme and the Vest.
I have worked full time since I graduated from college in my 20's. I have two children, who are adopted from Korea. They are now teenagers, and on some days I think they are taking a greater toll on my health than the CF!!!! JK, JK, JK.
I have been fairly compliant with my meds and chest physiotherapy my whole life. Moreso with the meds than the chest pt. I was extemely physically active until my late thirties, playing tennis, bicycling, hiking, backpacking. I honestly believe that physical activity more than took the place of percussion. Since the vent episode, I have never really gotten back to a place where I can do anything more physical than take walks.
Here is my daily regime of meds:
AM: albuterol, pulmozyme, Advair, Prilosec, azythromycin (MWF)
PM: albuterol, pulmozyme (yes, I use it twice a day), Advair
I also just started taking Oreganol gel capsules
I use the vest once a day, have my husband or one of the kids "beat" on me once a day (more on weekends or when I feel especially junky), and use the flutter valve once or twice a day.
I have been on continuous oxygen for about a year now. My goal is to get off of it in the next six months. In the past, I have been on and off it for varying amounts of time. I am very liberal in my use of oxygen, and have learned how to cart it everywhere. I have a concentrator at home, and use both the large and small portable tanks, depending on where I'm going. I will tell you that at first it was hard to get over the embarassment of being out in public with it. The first time I had to use it I was working in the Governor's office in a very public job. I just pushed past the embarassment. I still have a very public job. I think at work most people now treat it like my own piece of very large jewelry. People are amazingly wonderful about it.
I took a pulmonary rehabilitation class once, and it was fantastic for teaching all sorts of ways to conserve energy and maximize lung capacity. If you have that available to you, I cannot recommend it enough.
I definitely know the warm weather has been helpful, although the growing air pollution problems here are slowly choking me.
My family, friends and co-workers are supportive beyond measure. I read everything I can get my hands on about CF. I don't even know where to begin to tell you how awesome my doctors have been. My pulmonologist treats my flareups based not only on the lab results, but more importantly on what I tell him about how I'm feeling. He always tells me that I am the expert and that he is a supporter. One time when I was hospitalized he had two docs from the CF clinic come over for consults, and offered to transfer me to their care. I really liked the CF clinic doc who took care of kids, but I did not like the attitude of the CF clinic doc who dealt with adults. So, for the time being, I'm sticking with my pulmonologist.
I inherited a positive, but realist, attitude from my father, the true expert in making lemonade out of lemons. I have also learned to let people help me. I think that has been the hardest thing to learn, but one of the most useful. I let people help me with everything, and I've quit feeling guilty or ashamed about it. They seem to enjoy making a difference in my life, and I sure can use the extra help. So, if someone offers to run over to the cafeteria in the building next door at work to pick lunch up for me, I hand them my money and say thanks. If I'm feeling too tired to run next door and no one has stopped by yet to offer, I pick up the phone and call someone and ask them, if they're headed that way, would they bring me something.
In some ways, I think not knowing that I really had CF for all those years helped me also. I never had any thoughts about "life expectancy." I just assumed I could lead a very active and long life. I have to say that knowing I have CF has led me to some mental conversations that are not particularly productive. And I do obsess about things I never even thought of before the diagnosis.
You must all be tired of reading this by now, and I'm not sure what else you might want to know. I am an open book with everyone (work, neighbors, soccer and swim parents, and strangers) about my health, so if you have any questions, please feel free to ask. Except, don't ask my FEVs. My doctor and I quit doing them a long time ago because the test just made me exhausted and depressed and wasn't going to change the treatment anyway, so I don't know what they are.
I'm going outside to bask in the sun for awhile (with sunscreen, don't worry)! It's a gorgeous day and I have so many books to read....
Debi
54 w/CF
grateful for all the wonderful people who participate on this site
I got very ill in my forties, ending up on a vent in the hospital for awhile. By that time the gene had been identified, and blood tests were available for diagnosis, and that is when I was officially diagnosed. I have a mutation, but have no idea which one. I could probably look it up in my medical charts if someone thinks that info would help them. The only thing that the diagnosis changed is that the insurance company magically began covering Pulmozyme and the Vest.
I have worked full time since I graduated from college in my 20's. I have two children, who are adopted from Korea. They are now teenagers, and on some days I think they are taking a greater toll on my health than the CF!!!! JK, JK, JK.
I have been fairly compliant with my meds and chest physiotherapy my whole life. Moreso with the meds than the chest pt. I was extemely physically active until my late thirties, playing tennis, bicycling, hiking, backpacking. I honestly believe that physical activity more than took the place of percussion. Since the vent episode, I have never really gotten back to a place where I can do anything more physical than take walks.
Here is my daily regime of meds:
AM: albuterol, pulmozyme, Advair, Prilosec, azythromycin (MWF)
PM: albuterol, pulmozyme (yes, I use it twice a day), Advair
I also just started taking Oreganol gel capsules
I use the vest once a day, have my husband or one of the kids "beat" on me once a day (more on weekends or when I feel especially junky), and use the flutter valve once or twice a day.
I have been on continuous oxygen for about a year now. My goal is to get off of it in the next six months. In the past, I have been on and off it for varying amounts of time. I am very liberal in my use of oxygen, and have learned how to cart it everywhere. I have a concentrator at home, and use both the large and small portable tanks, depending on where I'm going. I will tell you that at first it was hard to get over the embarassment of being out in public with it. The first time I had to use it I was working in the Governor's office in a very public job. I just pushed past the embarassment. I still have a very public job. I think at work most people now treat it like my own piece of very large jewelry. People are amazingly wonderful about it.
I took a pulmonary rehabilitation class once, and it was fantastic for teaching all sorts of ways to conserve energy and maximize lung capacity. If you have that available to you, I cannot recommend it enough.
I definitely know the warm weather has been helpful, although the growing air pollution problems here are slowly choking me.
My family, friends and co-workers are supportive beyond measure. I read everything I can get my hands on about CF. I don't even know where to begin to tell you how awesome my doctors have been. My pulmonologist treats my flareups based not only on the lab results, but more importantly on what I tell him about how I'm feeling. He always tells me that I am the expert and that he is a supporter. One time when I was hospitalized he had two docs from the CF clinic come over for consults, and offered to transfer me to their care. I really liked the CF clinic doc who took care of kids, but I did not like the attitude of the CF clinic doc who dealt with adults. So, for the time being, I'm sticking with my pulmonologist.
I inherited a positive, but realist, attitude from my father, the true expert in making lemonade out of lemons. I have also learned to let people help me. I think that has been the hardest thing to learn, but one of the most useful. I let people help me with everything, and I've quit feeling guilty or ashamed about it. They seem to enjoy making a difference in my life, and I sure can use the extra help. So, if someone offers to run over to the cafeteria in the building next door at work to pick lunch up for me, I hand them my money and say thanks. If I'm feeling too tired to run next door and no one has stopped by yet to offer, I pick up the phone and call someone and ask them, if they're headed that way, would they bring me something.
In some ways, I think not knowing that I really had CF for all those years helped me also. I never had any thoughts about "life expectancy." I just assumed I could lead a very active and long life. I have to say that knowing I have CF has led me to some mental conversations that are not particularly productive. And I do obsess about things I never even thought of before the diagnosis.
You must all be tired of reading this by now, and I'm not sure what else you might want to know. I am an open book with everyone (work, neighbors, soccer and swim parents, and strangers) about my health, so if you have any questions, please feel free to ask. Except, don't ask my FEVs. My doctor and I quit doing them a long time ago because the test just made me exhausted and depressed and wasn't going to change the treatment anyway, so I don't know what they are.
I'm going outside to bask in the sun for awhile (with sunscreen, don't worry)! It's a gorgeous day and I have so many books to read....
Debi
54 w/CF
grateful for all the wonderful people who participate on this site