Hi everyone I am a 56 yearold female and I was just diagnosed with cystic fibrosis. I am very scared. The doctor is doing gene testing on me to see how severe I have it and they did a bronchoscopy and biopsied that. The biopsy showed a bacteria in my lung so they re trying to find which bacteria it is. In the meantime I am on pulmazyme neubulizer treatment. My whle body hurts Im coughing my chest feels tight I am always tired. If there is anyone out there could you tell me your story being diagnosed as an adult and how you are coping. because Im so angry that I have this.
mstein just diagnosed with cystic fibrosis
- Thread starter mstein
- Start date
In many ways this is a scary disease, but you do have treatment options and it seems like those with adult diagnosis typically have less aggressive CF symptoms and better outcomes. There are times that I have anger at CF. Dealing with a chronic disease is a little bit like dealing with any significant loss. You go through stages of grief and coping and have to develop skills to deal with all of those feelings. Talking it out with a therapist might be good. Another thing that helps is to participating in activities that helps you feel like you are sticking it to CF. For me that is exercise, it is my way to say 'in your face' CF.
Welcome to the forum. There are lots of great people on this forum who have had adult diagnosis and seem to have managed very well. Soon you'll be one of them.
Welcome to the forum. There are lots of great people on this forum who have had adult diagnosis and seem to have managed very well. Soon you'll be one of them.
Hi:
I am a 75 year old male, diagnosed at age 47. You have had CF all of your life, so there is no reason to be scared. If you are not, you should be seen at an APPROVED CYSTIC FIBROSIS CLINIC and you need to see a CF SPECIALIST.
That being said, your health will now improve tremendously. All CF patients have some bacteria in their lungs. Feel free to ask any questions out here and understand that you are not alone.
Bill
I am a 75 year old male, diagnosed at age 47. You have had CF all of your life, so there is no reason to be scared. If you are not, you should be seen at an APPROVED CYSTIC FIBROSIS CLINIC and you need to see a CF SPECIALIST.
That being said, your health will now improve tremendously. All CF patients have some bacteria in their lungs. Feel free to ask any questions out here and understand that you are not alone.
Bill
S
stephen
Guest
mstein,
I’m really sorry to hear you’re so upset at getting the CF diagnosis. Perhaps I, and others here, can allay your fears and make you feel that the diagnosis at the age of 54 can really be a blessing. It could lead to a treatment regimen that can greatly improve you health, and state of mind.
I don’t know how long you’ve had the cough, chest tightness, and fatigue, but for many here a “late life” diagnosis has lead to vast improvements in their health.
I was fortunate to finally be diagnosed with CF at the age of 63, and I do mean fortunate! The treatment regimen it lead to, culminating in being on Kalydeco this past year, just about eliminated the pulmonary problems I had for as long as I can remember.
As Printer advised, go to an approved adult CF center. (I see you live in NT State. If it’s near New York City you should have no problem finding a good center.) A non CF pulmonologist, no matter how good, does not have access to all the specialized drug programs and trial clinical trials that an accredited CF center has.
Hopefully, once the diagnosis sinks in, and you’ve spoken the team at a CF center and started treatments, you’ll feel much better.
I’m really sorry to hear you’re so upset at getting the CF diagnosis. Perhaps I, and others here, can allay your fears and make you feel that the diagnosis at the age of 54 can really be a blessing. It could lead to a treatment regimen that can greatly improve you health, and state of mind.
I don’t know how long you’ve had the cough, chest tightness, and fatigue, but for many here a “late life” diagnosis has lead to vast improvements in their health.
I was fortunate to finally be diagnosed with CF at the age of 63, and I do mean fortunate! The treatment regimen it lead to, culminating in being on Kalydeco this past year, just about eliminated the pulmonary problems I had for as long as I can remember.
As Printer advised, go to an approved adult CF center. (I see you live in NT State. If it’s near New York City you should have no problem finding a good center.) A non CF pulmonologist, no matter how good, does not have access to all the specialized drug programs and trial clinical trials that an accredited CF center has.
Hopefully, once the diagnosis sinks in, and you’ve spoken the team at a CF center and started treatments, you’ll feel much better.
Hello and welcome Mstein, I'm sorry for the reason you had to find us, but glad that you did!
I was diagnosed as an infant, so I'm not really the person you were looking for advice from. I just wanted to chime in to reiterate what others have said, in that it is very likely you will feel much better now that you have been diagnosed and starting to receive appropriate treatment.
That being said, I think it is completely understandable to be angry and fearful! I would think it would take time to wrap your head around. As Ethan said, you can try to use that anger to your advantage by focusing your energy on getting better.
Exercising, neb treatments, etc. I'd imagine after they find out what bacteria you're culturing in your lungs they'll get you started on antibiotics to treat that, and that may leave you feeling a lot better.
As others said, there on many on here that were diagnosed as adults, so hopefully you'll get a few more responses. Take care in the meantime!!
Autumn 34 w/CF
I was diagnosed as an infant, so I'm not really the person you were looking for advice from. I just wanted to chime in to reiterate what others have said, in that it is very likely you will feel much better now that you have been diagnosed and starting to receive appropriate treatment.
That being said, I think it is completely understandable to be angry and fearful! I would think it would take time to wrap your head around. As Ethan said, you can try to use that anger to your advantage by focusing your energy on getting better.
Exercising, neb treatments, etc. I'd imagine after they find out what bacteria you're culturing in your lungs they'll get you started on antibiotics to treat that, and that may leave you feeling a lot better. As others said, there on many on here that were diagnosed as adults, so hopefully you'll get a few more responses. Take care in the meantime!!
Autumn 34 w/CF
Aboveallislove
Super Moderator
Welcome! The above posters gave you wonderful advise. I would just like to reiterate what they said: You have always had CF; the difference is now you will get proper treatment and will feel so much better. But the reality of the diagnosis is still hard...horribly hard. I would like to add though that given your late diagnosis, it most likely means you have mutations that will benefit by Kalydeco. As backdrop: CF is caused by having 2 copies of mutated CFTR genes. The mutations different in severity and there are nearly 2000! The genes that have some proper function usually allow for individuals to struggle through life without doctors figuring out the CF. But there is a medicine Kalydeco that can "fix" the problem with specific genes. So it is very important that you are treated at a CF accredited center AND that you are immediately tested for the mutations....if they start with a small panel that's fine so long as they move on to do a full sequence to find out the specific mutations. In the meantime, the cf treatments will help you feel better and once they know your genes, assuming it is one Kalydeco works for, you can start that. Stephen above had great improvement as have many others....Hugs and Prayers,
Love
Love
Hi, I was diagnosed at 32 last year. I still have fluctuating emotions about it. I do keep telling myself I have always had this. This morning I went to my primary because I was coughing up green mucus. In the past, I would have shrugged my shoulders and let whatever it was run its course. But I have to be smarter than that. Remember, genetic testing has come a long way and they didn't have the CF genetic test until 1989! They are still finding combinations of genes that are CF causing. (It does not make it better, but for some reason these facts helped me get through some anger.)
I was 19 when I first sought help for what I now know were CF symptoms. I was in Philadelphia at college, a modern dancer in a professional company and taking classes all day. They thought it was my thyroid. There were even whispers about anorexia/bulemia. They had me keep a food journal and when they calculated my daily caloric intake and confirmed I was not vomiting, they were even more convinced about my throid. I was eating everything! When it wasn't my thyroid, they determined it was depression and medicated me with Paxil. (I spent a year of my life drugged and over-sleeping but I still somehow managed to dance/eat between sleeping.) I think about that at least once a week but I also think about the CF Center I go to and my Primary who have helped me so much. I try to focus on the good and knowing that now that I am getting these treatments, I can extend my life and even improve the quality of my life. I let myself get angry, I just don't stay angry. I hope you have professionals around you that are as good or better than the ones I have around me. I can not express enough how important it is to have a great relationship with your doctors.
And Bill is right. He gave me the same advice when I first came on here. (Thank-you, Bill!)
Best of luck.
I was 19 when I first sought help for what I now know were CF symptoms. I was in Philadelphia at college, a modern dancer in a professional company and taking classes all day. They thought it was my thyroid. There were even whispers about anorexia/bulemia. They had me keep a food journal and when they calculated my daily caloric intake and confirmed I was not vomiting, they were even more convinced about my throid. I was eating everything! When it wasn't my thyroid, they determined it was depression and medicated me with Paxil. (I spent a year of my life drugged and over-sleeping but I still somehow managed to dance/eat between sleeping.) I think about that at least once a week but I also think about the CF Center I go to and my Primary who have helped me so much. I try to focus on the good and knowing that now that I am getting these treatments, I can extend my life and even improve the quality of my life. I let myself get angry, I just don't stay angry. I hope you have professionals around you that are as good or better than the ones I have around me. I can not express enough how important it is to have a great relationship with your doctors.
And Bill is right. He gave me the same advice when I first came on here. (Thank-you, Bill!)
Best of luck.