I reside in "CF House" but in different room!

[greatbay]

I am a 58 yr. old woman who suffers from severe shortness of breath, recurring pneumonia (since 1982 I have had pneumonia 62 times!) I have been diagnosed with COPD, Bronchiectisis, chronic bronchitis, eosinophilic pneumonia, Mycobacterium avium complex, reflux, erothemia nodosum, psudemonis (don't know correct spelling) infection. In other words my lungs are a mess. I take so many antibiotics and mucus thinning drugs plus a horde of inhalers....I am on oxygen 24/7 now. Was sent to Boston's Beth Israel Hospital to see a premier pulmonogist for possible lung resection but lungs too bad to do. Questioned him about having CF as I am a carrier (lost daugher in 1969 with CF, have 4 other children with different husband and 3 are carriers) he was the one who said what I have is similar to CF and you could say I live in the same house as CF, just in a different room My primary doctor firmly believes as I do that I have developed CF but says, "should we do a test at this late stage of life?" and I don't know if it is worth it at this point. Need some feedback as to whether I should contact CF Med Center in my state and request some testing or just let it go since they can't find any portion of my lungs that have healthy tissue anymore. Help!

 

[greatbay]

I am a 58 yr. old woman who suffers from severe shortness of breath, recurring pneumonia (since 1982 I have had pneumonia 62 times!) I have been diagnosed with COPD, Bronchiectisis, chronic bronchitis, eosinophilic pneumonia, Mycobacterium avium complex, reflux, erothemia nodosum, psudemonis (don't know correct spelling) infection. In other words my lungs are a mess. I take so many antibiotics and mucus thinning drugs plus a horde of inhalers....I am on oxygen 24/7 now. Was sent to Boston's Beth Israel Hospital to see a premier pulmonogist for possible lung resection but lungs too bad to do. Questioned him about having CF as I am a carrier (lost daugher in 1969 with CF, have 4 other children with different husband and 3 are carriers) he was the one who said what I have is similar to CF and you could say I live in the same house as CF, just in a different room My primary doctor firmly believes as I do that I have developed CF but says, "should we do a test at this late stage of life?" and I don't know if it is worth it at this point. Need some feedback as to whether I should contact CF Med Center in my state and request some testing or just let it go since they can't find any portion of my lungs that have healthy tissue anymore. Help!

 

[greatbay]

I am a 58 yr. old woman who suffers from severe shortness of breath, recurring pneumonia (since 1982 I have had pneumonia 62 times!) I have been diagnosed with COPD, Bronchiectisis, chronic bronchitis, eosinophilic pneumonia, Mycobacterium avium complex, reflux, erothemia nodosum, psudemonis (don't know correct spelling) infection. In other words my lungs are a mess. I take so many antibiotics and mucus thinning drugs plus a horde of inhalers....I am on oxygen 24/7 now. Was sent to Boston's Beth Israel Hospital to see a premier pulmonogist for possible lung resection but lungs too bad to do. Questioned him about having CF as I am a carrier (lost daugher in 1969 with CF, have 4 other children with different husband and 3 are carriers) he was the one who said what I have is similar to CF and you could say I live in the same house as CF, just in a different room My primary doctor firmly believes as I do that I have developed CF but says, "should we do a test at this late stage of life?" and I don't know if it is worth it at this point. Need some feedback as to whether I should contact CF Med Center in my state and request some testing or just let it go since they can't find any portion of my lungs that have healthy tissue anymore. Help!

 

[EnergyGal]

I reside in "CF House

Hello Greatbay

Wow you have been through so much. I am sorry to hear about your daughter. It is becoming more common for parents who have CF themselves to have children with the disease as well.

If you believe in transplantation, check with your pulmo doctor. I had a double lung transplant due to CF and they transplant many people older than you up to the age of 65. If this is for you, I suggest you do not waste any time and call a transplant center or have your trusted doctor do this for you.

I have a friend who has cf and was diagnosed at 54 and two years later she received her transplant. She is doing wonderful. No more oxygen and living life fully.

Take care

 

[EnergyGal]

I reside in "CF House

Hello Greatbay

Wow you have been through so much. I am sorry to hear about your daughter. It is becoming more common for parents who have CF themselves to have children with the disease as well.

If you believe in transplantation, check with your pulmo doctor. I had a double lung transplant due to CF and they transplant many people older than you up to the age of 65. If this is for you, I suggest you do not waste any time and call a transplant center or have your trusted doctor do this for you.

I have a friend who has cf and was diagnosed at 54 and two years later she received her transplant. She is doing wonderful. No more oxygen and living life fully.

Take care

 

[EnergyGal]

I reside in "CF House

Hello Greatbay

Wow you have been through so much. I am sorry to hear about your daughter. It is becoming more common for parents who have CF themselves to have children with the disease as well.

If you believe in transplantation, check with your pulmo doctor. I had a double lung transplant due to CF and they transplant many people older than you up to the age of 65. If this is for you, I suggest you do not waste any time and call a transplant center or have your trusted doctor do this for you.

I have a friend who has cf and was diagnosed at 54 and two years later she received her transplant. She is doing wonderful. No more oxygen and living life fully.

Take care

 

[2perfectboys]

I reside in

were u ever a smoker? ....

why would u not consider a CF test?...I don't see why u would have to contact the CF center, it seems like your doc could order a sweat test or better yet a newer more comprehensive CF genetic test, to say for certain wheter u have CF or r just a CF carrier with unrelated lung issues

Good luck

 

[2perfectboys]

I reside in

were u ever a smoker? ....

why would u not consider a CF test?...I don't see why u would have to contact the CF center, it seems like your doc could order a sweat test or better yet a newer more comprehensive CF genetic test, to say for certain wheter u have CF or r just a CF carrier with unrelated lung issues

Good luck

 

[2perfectboys]

I reside in

were u ever a smoker? ....

why would u not consider a CF test?...I don't see why u would have to contact the CF center, it seems like your doc could order a sweat test or better yet a newer more comprehensive CF genetic test, to say for certain wheter u have CF or r just a CF carrier with unrelated lung issues

Good luck

 

[julie]

I reside in "CF House

<div class="FTQUOTE"><begin quote>My primary doctor firmly believes as I do that I have developed CF but says, </end quote></div>

You can't develop CF, you either have it or you don't. I'm not sure if you were just putting that and meant deveolp the CF symptoms (which do worsen as time goes on) or if you literally meant what you put...

I personally think that testing might be valuable so you can get coverage (if it's an issue) of medications to treat some of your lung issues.

Do you also have any digestive problems? Just curious, but that would be another factor that a definite diagnosis could help clear up as well.

I'm sorry for the loss of your daughter.

I'm very curious to hear the outcome and if you decide to do testing and what the results are. Please keep us posted on your decision and the outcome!!

Welcome to the site.

 

[julie]

I reside in "CF House

<div class="FTQUOTE"><begin quote>My primary doctor firmly believes as I do that I have developed CF but says, </end quote></div>

You can't develop CF, you either have it or you don't. I'm not sure if you were just putting that and meant deveolp the CF symptoms (which do worsen as time goes on) or if you literally meant what you put...

I personally think that testing might be valuable so you can get coverage (if it's an issue) of medications to treat some of your lung issues.

Do you also have any digestive problems? Just curious, but that would be another factor that a definite diagnosis could help clear up as well.

I'm sorry for the loss of your daughter.

I'm very curious to hear the outcome and if you decide to do testing and what the results are. Please keep us posted on your decision and the outcome!!

Welcome to the site.

 

[julie]

I reside in "CF House

<div class="FTQUOTE"><begin quote>My primary doctor firmly believes as I do that I have developed CF but says, </end quote></div>

You can't develop CF, you either have it or you don't. I'm not sure if you were just putting that and meant deveolp the CF symptoms (which do worsen as time goes on) or if you literally meant what you put...

I personally think that testing might be valuable so you can get coverage (if it's an issue) of medications to treat some of your lung issues.

Do you also have any digestive problems? Just curious, but that would be another factor that a definite diagnosis could help clear up as well.

I'm sorry for the loss of your daughter.

I'm very curious to hear the outcome and if you decide to do testing and what the results are. Please keep us posted on your decision and the outcome!!

Welcome to the site.

 

[greatbay]

I reside in "CF House

Thanks for your replies....I did mean advancement of symtoms not developed CF at late age, thanks for pointing that out. I smoked when I was younger but haven't for years. I had my gall bladder out in 75 after being diagnosed with divaticulousis (spelling) and being treated for that for 7 years and all the time it was my gall bladder. I suffer from constipation all the time and "unexplained" stomach pain, that has been what the doctor has called it after all kinds of tests came back negative. My fingers are swollen but after reading info on this site, I think they are really starting to club and it is not really swelling. Again, thanks for imput. The reason for going to CF Med Center is for help in paying for other testing if they deem it necessary after sweat test.

 

[greatbay]

I reside in "CF House

Thanks for your replies....I did mean advancement of symtoms not developed CF at late age, thanks for pointing that out. I smoked when I was younger but haven't for years. I had my gall bladder out in 75 after being diagnosed with divaticulousis (spelling) and being treated for that for 7 years and all the time it was my gall bladder. I suffer from constipation all the time and "unexplained" stomach pain, that has been what the doctor has called it after all kinds of tests came back negative. My fingers are swollen but after reading info on this site, I think they are really starting to club and it is not really swelling. Again, thanks for imput. The reason for going to CF Med Center is for help in paying for other testing if they deem it necessary after sweat test.

 

[greatbay]

I reside in "CF House

Thanks for your replies....I did mean advancement of symtoms not developed CF at late age, thanks for pointing that out. I smoked when I was younger but haven't for years. I had my gall bladder out in 75 after being diagnosed with divaticulousis (spelling) and being treated for that for 7 years and all the time it was my gall bladder. I suffer from constipation all the time and "unexplained" stomach pain, that has been what the doctor has called it after all kinds of tests came back negative. My fingers are swollen but after reading info on this site, I think they are really starting to club and it is not really swelling. Again, thanks for imput. The reason for going to CF Med Center is for help in paying for other testing if they deem it necessary after sweat test.

 

[rotandroll]

I reside in "CF House

Ask your doctor about the possibility of having symptoms as a carrier of the gene. It's possible.

 

[rotandroll]

I reside in "CF House

Ask your doctor about the possibility of having symptoms as a carrier of the gene. It's possible.

 

[rotandroll]

I reside in "CF House

Ask your doctor about the possibility of having symptoms as a carrier of the gene. It's possible.

 

[mom2lillian]

I reside in "CF House

greatbay-I tihnk your doctor is being neglectful if he believes you are showing the CF symptoms --which you are! and he hasnt ordered a full panel screening. It is very possible you passed of the mutation that was able to be detected to your daughter and that you have an additional more rare mutation yourself (if this is the case after testing your children should also get a full panel). Anyway I woudl contact CF center immediately and demand testing, I will list the information for the test you need below and a contact #, if you fill out a pre-authorization form they will respond back to you or your doctor depending on who does it within 2 hours usually. If you are denied because Ambry is out of network then there may be a loophole (this happened to me) and in my case it is covered if I get it drawn at a hospital.

At my CF clinic the director is a female who lost her son to CF in the 70's. She became very involved in CF and was our director for a long long time. She had always had a bit of a cough and they had tested her for CF out of curiousity before with full panel and it was always negative. She fell ill with pneumonia and bronchitis a couple tiems in a year so our doc said well lets get a sputum on you and sure enoguh it came up with Pseudomona A and so they sent out for another full panel and sure enoguh she came up as having CF! She was in her early 60's! She has had to give up her position as director and does other wokr for clinic now but she is very happy to be dx.

This late dx is happening more and more and every year they are able to add more and more mutations that they find to the panel. My 2nd mutation was not able to be found so they dx me symptomatically and there is no reason they cannot do this for you as you are far worse than I was at dx, they did a full panel on me about 2-3 years alter and were able to come up with the 2nd one as it had just been found and classified as a CF mutation within past few years.

Take care and be your own advocate!

 

[mom2lillian]

I reside in "CF House

greatbay-I tihnk your doctor is being neglectful if he believes you are showing the CF symptoms --which you are! and he hasnt ordered a full panel screening. It is very possible you passed of the mutation that was able to be detected to your daughter and that you have an additional more rare mutation yourself (if this is the case after testing your children should also get a full panel). Anyway I woudl contact CF center immediately and demand testing, I will list the information for the test you need below and a contact #, if you fill out a pre-authorization form they will respond back to you or your doctor depending on who does it within 2 hours usually. If you are denied because Ambry is out of network then there may be a loophole (this happened to me) and in my case it is covered if I get it drawn at a hospital.

At my CF clinic the director is a female who lost her son to CF in the 70's. She became very involved in CF and was our director for a long long time. She had always had a bit of a cough and they had tested her for CF out of curiousity before with full panel and it was always negative. She fell ill with pneumonia and bronchitis a couple tiems in a year so our doc said well lets get a sputum on you and sure enoguh it came up with Pseudomona A and so they sent out for another full panel and sure enoguh she came up as having CF! She was in her early 60's! She has had to give up her position as director and does other wokr for clinic now but she is very happy to be dx.

This late dx is happening more and more and every year they are able to add more and more mutations that they find to the panel. My 2nd mutation was not able to be found so they dx me symptomatically and there is no reason they cannot do this for you as you are far worse than I was at dx, they did a full panel on me about 2-3 years alter and were able to come up with the 2nd one as it had just been found and classified as a CF mutation within past few years.

Take care and be your own advocate!