who's over 50?

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Laura47

New member
I'm 64, will be eligible for Medicare in Dec. when I turn 65. I was diagnosed at 47.

Are all of you aware of <em>CF Roundtable</em>? It's a quarterly newsletter written by adults for adults (although parents of CF children find it informative as well)that covers a focus topic each issue but also has a research column, a wellness column written by a physician with CF, and a legal column written by a lawyer with CF, plus much more. You can find out more about it by going to <a href="http://cfroundtable.com">http://cfroundtable.com</a>
 
L

Laura47

New member
I'm 64, will be eligible for Medicare in Dec. when I turn 65. I was diagnosed at 47.

Are all of you aware of <em>CF Roundtable</em>? It's a quarterly newsletter written by adults for adults (although parents of CF children find it informative as well)that covers a focus topic each issue but also has a research column, a wellness column written by a physician with CF, and a legal column written by a lawyer with CF, plus much more. You can find out more about it by going to <a href="http://cfroundtable.com">http://cfroundtable.com</a>
 
B

bluevelvet73

New member
I am 56 diagnosed at 53 with Bronchiectasis and DF508. Since I have no insurance, they said any further blood testing to check further on the CF factor would be too costly.
I have 4 kids...married for 35 yrs in June.
My nephew was born with CF. He is 27 and awaiting his 2nd lung transplant.
This is my 1st time posting. I'm happy to be able to talk to other adults who have late diagnosis. I'm really not sure if the Bronchiectasis or the CF cause more symptoms.
I'd be interested in what treatment others who were diagnosed late receive.
Thank-you,
Barb
 
B

bluevelvet73

New member
I am 56 diagnosed at 53 with Bronchiectasis and DF508. Since I have no insurance, they said any further blood testing to check further on the CF factor would be too costly.
I have 4 kids...married for 35 yrs in June.
My nephew was born with CF. He is 27 and awaiting his 2nd lung transplant.
This is my 1st time posting. I'm happy to be able to talk to other adults who have late diagnosis. I'm really not sure if the Bronchiectasis or the CF cause more symptoms.
I'd be interested in what treatment others who were diagnosed late receive.
Thank-you,
Barb
 
L

litsa

New member
Hello to all,
may I ask whether you are all carriers? Because as far as I am aware sufferers of CF need medication and enzymes, and they are diagnosed early in life. Please let me know, since we have a big debate over here, on whether a sufferer can be diagnosed so late as at their 40s! Thank you!!!
 
L

litsa

New member
Hello to all,
may I ask whether you are all carriers? Because as far as I am aware sufferers of CF need medication and enzymes, and they are diagnosed early in life. Please let me know, since we have a big debate over here, on whether a sufferer can be diagnosed so late as at their 40s! Thank you!!!
 
P

Printer

Active member
I was dx at age 47. I have two mutations. I missed the entire 2nd quarter of hs with lung issues, I was x rayed on a monthly basis for TB for 18 months. At age 20 I started stomach bleeding and part of my stomach was removed at age 26. Over the next 10 years I was hospitalized about 70 times with pancreatitis (ALL CF RELATED). I started taking enzymes 5 years before I was dx. Even after I was dx by the head of the CF Department Children's Hospital in Boston, my Primary Physician would say things like I had CF SYNDROM or ADULT CF. I have been and am currently treated at two of the largest APPROVED CF CENTERS in the US. I see a Gastro CF Reseacher who not only attended the 2011 CF Convention in CA, he was a PRESENTER there. While my lungs still function pretty well (FEV1 in mid 70s) my pancreasis produces ZERO enzymes and I'm borderline positive for CFRD. HELL YES I HAVE CYSTIC FIBROSIS.

Having said that I'm going to apologize to you, in advance, for what I am about to say.

One of my biggest pet peves is NON CF DOCTORS who profess to understand CF when they don't have a clue. (see recent thread about stupid things Doctors have said). I don't know or care which side of the "debate" that you are on, the fact that there is a debate convinces me that it is not only the local Doctors that are ingorant to CF. There is a older thread here - see forums/adult/ CFers over 40. Your debate club will find that very educational.
Bill
 
P

Printer

Active member
I was dx at age 47. I have two mutations. I missed the entire 2nd quarter of hs with lung issues, I was x rayed on a monthly basis for TB for 18 months. At age 20 I started stomach bleeding and part of my stomach was removed at age 26. Over the next 10 years I was hospitalized about 70 times with pancreatitis (ALL CF RELATED). I started taking enzymes 5 years before I was dx. Even after I was dx by the head of the CF Department Children's Hospital in Boston, my Primary Physician would say things like I had CF SYNDROM or ADULT CF. I have been and am currently treated at two of the largest APPROVED CF CENTERS in the US. I see a Gastro CF Reseacher who not only attended the 2011 CF Convention in CA, he was a PRESENTER there. While my lungs still function pretty well (FEV1 in mid 70s) my pancreasis produces ZERO enzymes and I'm borderline positive for CFRD. HELL YES I HAVE CYSTIC FIBROSIS.

Having said that I'm going to apologize to you, in advance, for what I am about to say.

One of my biggest pet peves is NON CF DOCTORS who profess to understand CF when they don't have a clue. (see recent thread about stupid things Doctors have said). I don't know or care which side of the "debate" that you are on, the fact that there is a debate convinces me that it is not only the local Doctors that are ingorant to CF. There is a older thread here - see forums/adult/ CFers over 40. Your debate club will find that very educational.
Bill
 
V

vivsmom

New member
replying to: Hello to all,
may I ask whether you are all carriers? Because as far as I am aware sufferers of CF need medication and enzymes, and they are diagnosed early in life. Please let me know, since we have a big debate over here, on whether a sufferer can be diagnosed so late as at their 40s! Thank you!!!

Litsa,
To answer your question about being carriers. Anyone who has been diagnosed with CF are ALL carriers. Some of us have different levels of symptoms. Not everyone who has been diagnosed with CF suffers the same. I spent my entire life thinking I had lung problems stemming from my mom smoking while she was pregnant with me and my father smoking until the day he died. When my mom brought me to a doctor when I was about 8, he did a chest x-ray, said it was normal and told my Mom my coughing was psychosomatic. It wasn't until a young intern diagnosed me with Bronchiectasis when I was 22 did I feel validated in my health concerns. Unfortunately, at the time testing me for CF never occurred to him because I did not have any other symptoms or health issues. He has since passed away and my new pulmonary doctor thought to test me last year after seeing my health deteriorate over the past 3 years. I am now on a regiment of medications typical of CF patients. Being part of this wonderful supportive community, I have found many people in my circumstances. Remember, the CF gene was only discovered about 20 years ago. You can't pigeon hole every diagnosis. I was born in the 50's and unless I had exhibited ALL the typical symptoms of CF, a diagnosis was never pursued. Doctors did not know back then there could be varying degrees of this disease.
I hope that helps your debate. I am sure there are others who will add to this.

Karen
vivsmom diagnosed at 55, CF D508 and A347 pancreatic sufficient
 
V

vivsmom

New member
replying to: Hello to all,
may I ask whether you are all carriers? Because as far as I am aware sufferers of CF need medication and enzymes, and they are diagnosed early in life. Please let me know, since we have a big debate over here, on whether a sufferer can be diagnosed so late as at their 40s! Thank you!!!

Litsa,
To answer your question about being carriers. Anyone who has been diagnosed with CF are ALL carriers. Some of us have different levels of symptoms. Not everyone who has been diagnosed with CF suffers the same. I spent my entire life thinking I had lung problems stemming from my mom smoking while she was pregnant with me and my father smoking until the day he died. When my mom brought me to a doctor when I was about 8, he did a chest x-ray, said it was normal and told my Mom my coughing was psychosomatic. It wasn't until a young intern diagnosed me with Bronchiectasis when I was 22 did I feel validated in my health concerns. Unfortunately, at the time testing me for CF never occurred to him because I did not have any other symptoms or health issues. He has since passed away and my new pulmonary doctor thought to test me last year after seeing my health deteriorate over the past 3 years. I am now on a regiment of medications typical of CF patients. Being part of this wonderful supportive community, I have found many people in my circumstances. Remember, the CF gene was only discovered about 20 years ago. You can't pigeon hole every diagnosis. I was born in the 50's and unless I had exhibited ALL the typical symptoms of CF, a diagnosis was never pursued. Doctors did not know back then there could be varying degrees of this disease.
I hope that helps your debate. I am sure there are others who will add to this.

Karen
vivsmom diagnosed at 55, CF D508 and A347 pancreatic sufficient
 
V

vivsmom

New member
Barb,
It sounds like you have already had testing if they know you have the D508 gene. There are many programs that help with medications. Start with the CF Foundation website, if you haven't already. And if you have a CF Care Center in your area, they would be able to help you find funds.
My medication regiment is: with nebulizer - Xopenex, wait 15 minutes, Hypertonic Saline, Pulmozyme and either Cayton or Tobi. with inhaler - Symbicort. I do this twice a day. I also take Azithromycin tablet three times a week. When I get an infection, we try a couple antibiotics orally and if they don't work, I am put on IV antibiotics for 2 weeks. I just finished one of those a week ago. I have an appointment with a hospital next week for evaluation for lung transplant.
I think the diagnosis of Bronchiectasis when I was 22 helped a bit because I did try several different inhalers over the years and many, many antibiotics. I imagine if not, I would be in worse shape by now. I am glad to have the CF diagnosis as it has opened up many new medications to try. I feel that I am at least at a leveling off period instead of spiraling down as I felt last year.
Take care!
 
V

vivsmom

New member
Barb,
It sounds like you have already had testing if they know you have the D508 gene. There are many programs that help with medications. Start with the CF Foundation website, if you haven't already. And if you have a CF Care Center in your area, they would be able to help you find funds.
My medication regiment is: with nebulizer - Xopenex, wait 15 minutes, Hypertonic Saline, Pulmozyme and either Cayton or Tobi. with inhaler - Symbicort. I do this twice a day. I also take Azithromycin tablet three times a week. When I get an infection, we try a couple antibiotics orally and if they don't work, I am put on IV antibiotics for 2 weeks. I just finished one of those a week ago. I have an appointment with a hospital next week for evaluation for lung transplant.
I think the diagnosis of Bronchiectasis when I was 22 helped a bit because I did try several different inhalers over the years and many, many antibiotics. I imagine if not, I would be in worse shape by now. I am glad to have the CF diagnosis as it has opened up many new medications to try. I feel that I am at least at a leveling off period instead of spiraling down as I felt last year.
Take care!
 
P

Printer

Active member
Barb:

Go to Forum/Newly Diagnosed. Ambry Genetics may be able to help you in identifying your mutations.

Bill
 
P

Printer

Active member
Barb:

Go to Forum/Newly Diagnosed. Ambry Genetics may be able to help you in identifying your mutations.

Bill
 
C

Cleanair

New member
I am a 65 year old woman, diagnosed at 57. Not by a doctor though. My daughter was pregnant and they were doing genetic blood testing and guess what -- she's a carrier -- so I told the doctor what I had! I have the DeltaF508 and R117H mutations.
 
C

Cleanair

New member
I am a 65 year old woman, diagnosed at 57. Not by a doctor though. My daughter was pregnant and they were doing genetic blood testing and guess what -- she's a carrier -- so I told the doctor what I had! I have the DeltaF508 and R117H mutations.
 
L

litsa

New member
vivsmom thank you for your time to reply to my question. I am a carrier of CF, so is my brother and husband, and our only child of 14 months. Its just that I thought that carrier and sufferer are completely different. I mean, as far as I know a carrier doesnt exhibit any health issue whereas a sufferer can varry from mild to severe case and has to follow a regime of meds and vitamins and enzymes. Thats what I was trying to make clear in my head, since according to this, if someone is a sufferer cannot be diagnosed at 40, can he? Correct me if I'm wrong, and thank you again.
 
L

litsa

New member
vivsmom thank you for your time to reply to my question. I am a carrier of CF, so is my brother and husband, and our only child of 14 months. Its just that I thought that carrier and sufferer are completely different. I mean, as far as I know a carrier doesnt exhibit any health issue whereas a sufferer can varry from mild to severe case and has to follow a regime of meds and vitamins and enzymes. Thats what I was trying to make clear in my head, since according to this, if someone is a sufferer cannot be diagnosed at 40, can he? Correct me if I'm wrong, and thank you again.
 
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Printer

Active member
By definition a CARRIER has one known mutation a CF PATIENT has 2 known mutations. When I was first tested in 1995 they found one mutation but at that time they could only scan for 250 mutations. In 2011 I had a second screening, this time for more than 1600 mutations. In this FULL CF SEQUENCING they found my second mutation.

Depending on when you, your brother and your husband had your sequencing done, you may be a CARRIER OR ACTUALLY HAVE CF. People on here have been dx as late as 70 years of age. I would recommend that you have a FULL CF SEQUENCING done.

To directly answer your question YES you are wrong. Contact your nearest APPROVED CF CENTER.
 
P

Printer

Active member
By definition a CARRIER has one known mutation a CF PATIENT has 2 known mutations. When I was first tested in 1995 they found one mutation but at that time they could only scan for 250 mutations. In 2011 I had a second screening, this time for more than 1600 mutations. In this FULL CF SEQUENCING they found my second mutation.

Depending on when you, your brother and your husband had your sequencing done, you may be a CARRIER OR ACTUALLY HAVE CF. People on here have been dx as late as 70 years of age. I would recommend that you have a FULL CF SEQUENCING done.

To directly answer your question YES you are wrong. Contact your nearest APPROVED CF CENTER.
 
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