DF508 carriers and bad CF symptoms

P

point

New member
My bros and I do not carry D508, see my signature for our mutations. My dad is a carrier. He has chronic sinus troubles, his two bros also had chronic sinus problems. All of them have had sinus surgery a few times in their life time. I just find it interesting that he also has chronic sinus problems, but does not have the other symptoms associated with Primary Ciliary Diskinesia.

Dr.s are still very much learning about CF (as well as other diseases) so I wouldn't completely dismiss the posibility. Currently there is no data to support it, but there also isn't a treatment that will fix our CFTR completely yet but we are all hoping for one. Science is not static.

To SalyAndSweet, I am sorry to hear about your Mom. I hope she continues to get better and maybe you can talk w/ your dr. or just put in a little distance between you two regularly (aka not sharing drinking glasses, food, etc.). I have two bros w/ CF and we still hang out and see each other. We just apply a little common sense when we are around each other.
 
P

point

New member
My bros and I do not carry D508, see my signature for our mutations. My dad is a carrier. He has chronic sinus troubles, his two bros also had chronic sinus problems. All of them have had sinus surgery a few times in their life time. I just find it interesting that he also has chronic sinus problems, but does not have the other symptoms associated with Primary Ciliary Diskinesia.

Dr.s are still very much learning about CF (as well as other diseases) so I wouldn't completely dismiss the posibility. Currently there is no data to support it, but there also isn't a treatment that will fix our CFTR completely yet but we are all hoping for one. Science is not static.

To SalyAndSweet, I am sorry to hear about your Mom. I hope she continues to get better and maybe you can talk w/ your dr. or just put in a little distance between you two regularly (aka not sharing drinking glasses, food, etc.). I have two bros w/ CF and we still hang out and see each other. We just apply a little common sense when we are around each other.
 
P

point

New member
My bros and I do not carry D508, see my signature for our mutations. My dad is a carrier. He has chronic sinus troubles, his two bros also had chronic sinus problems. All of them have had sinus surgery a few times in their life time. I just find it interesting that he also has chronic sinus problems, but does not have the other symptoms associated with Primary Ciliary Diskinesia.

Dr.s are still very much learning about CF (as well as other diseases) so I wouldn't completely dismiss the posibility. Currently there is no data to support it, but there also isn't a treatment that will fix our CFTR completely yet but we are all hoping for one. Science is not static.

To SalyAndSweet, I am sorry to hear about your Mom. I hope she continues to get better and maybe you can talk w/ your dr. or just put in a little distance between you two regularly (aka not sharing drinking glasses, food, etc.). I have two bros w/ CF and we still hang out and see each other. We just apply a little common sense when we are around each other.
 
P

point

New member
My bros and I do not carry D508, see my signature for our mutations. My dad is a carrier. He has chronic sinus troubles, his two bros also had chronic sinus problems. All of them have had sinus surgery a few times in their life time. I just find it interesting that he also has chronic sinus problems, but does not have the other symptoms associated with Primary Ciliary Diskinesia.

Dr.s are still very much learning about CF (as well as other diseases) so I wouldn't completely dismiss the posibility. Currently there is no data to support it, but there also isn't a treatment that will fix our CFTR completely yet but we are all hoping for one. Science is not static.

To SalyAndSweet, I am sorry to hear about your Mom. I hope she continues to get better and maybe you can talk w/ your dr. or just put in a little distance between you two regularly (aka not sharing drinking glasses, food, etc.). I have two bros w/ CF and we still hang out and see each other. We just apply a little common sense when we are around each other.
 
P

point

New member
My bros and I do not carry D508, see my signature for our mutations. My dad is a carrier. He has chronic sinus troubles, his two bros also had chronic sinus problems. All of them have had sinus surgery a few times in their life time. I just find it interesting that he also has chronic sinus problems, but does not have the other symptoms associated with Primary Ciliary Diskinesia.
<br />
<br />Dr.s are still very much learning about CF (as well as other diseases) so I wouldn't completely dismiss the posibility. Currently there is no data to support it, but there also isn't a treatment that will fix our CFTR completely yet but we are all hoping for one. Science is not static.
<br />
<br />To SalyAndSweet, I am sorry to hear about your Mom. I hope she continues to get better and maybe you can talk w/ your dr. or just put in a little distance between you two regularly (aka not sharing drinking glasses, food, etc.). I have two bros w/ CF and we still hang out and see each other. We just apply a little common sense when we are around each other.
 
H

Heidi

New member
My husband has had a neagative sweat test, and we think he is a carrier of DF508. He has a lot of respiratory issues. His mother says he coughed all his life. He was adopted, so his family health history is unknown. Ever since I met him, I have thought, "wow, he has the worst asthma of anyone I have ever known." He has not been that good about seeking out good medical care, mostly just going in when he absolutely could not breathe. Recently, he switched to a highly recommended pulmonary dr. He has been taking Singulair, Advair, and occasionally albuterol for a long time. At the most recent appt., his O2 was 95%. He could not remember what his PFT's were, but the pulm dr said he has a lot of scarring on his longs, similiar to a heavy smoker. He has never smoked. He coughs all the time, hacking, spits up mucus every single day. He asks me to beat on his back to make it easier to come up. I do not know if this is significant, but he sweats a lot at night.
 
H

Heidi

New member
My husband has had a neagative sweat test, and we think he is a carrier of DF508. He has a lot of respiratory issues. His mother says he coughed all his life. He was adopted, so his family health history is unknown. Ever since I met him, I have thought, "wow, he has the worst asthma of anyone I have ever known." He has not been that good about seeking out good medical care, mostly just going in when he absolutely could not breathe. Recently, he switched to a highly recommended pulmonary dr. He has been taking Singulair, Advair, and occasionally albuterol for a long time. At the most recent appt., his O2 was 95%. He could not remember what his PFT's were, but the pulm dr said he has a lot of scarring on his longs, similiar to a heavy smoker. He has never smoked. He coughs all the time, hacking, spits up mucus every single day. He asks me to beat on his back to make it easier to come up. I do not know if this is significant, but he sweats a lot at night.
 
H

Heidi

New member
My husband has had a neagative sweat test, and we think he is a carrier of DF508. He has a lot of respiratory issues. His mother says he coughed all his life. He was adopted, so his family health history is unknown. Ever since I met him, I have thought, "wow, he has the worst asthma of anyone I have ever known." He has not been that good about seeking out good medical care, mostly just going in when he absolutely could not breathe. Recently, he switched to a highly recommended pulmonary dr. He has been taking Singulair, Advair, and occasionally albuterol for a long time. At the most recent appt., his O2 was 95%. He could not remember what his PFT's were, but the pulm dr said he has a lot of scarring on his longs, similiar to a heavy smoker. He has never smoked. He coughs all the time, hacking, spits up mucus every single day. He asks me to beat on his back to make it easier to come up. I do not know if this is significant, but he sweats a lot at night.
 
H

Heidi

New member
My husband has had a neagative sweat test, and we think he is a carrier of DF508. He has a lot of respiratory issues. His mother says he coughed all his life. He was adopted, so his family health history is unknown. Ever since I met him, I have thought, "wow, he has the worst asthma of anyone I have ever known." He has not been that good about seeking out good medical care, mostly just going in when he absolutely could not breathe. Recently, he switched to a highly recommended pulmonary dr. He has been taking Singulair, Advair, and occasionally albuterol for a long time. At the most recent appt., his O2 was 95%. He could not remember what his PFT's were, but the pulm dr said he has a lot of scarring on his longs, similiar to a heavy smoker. He has never smoked. He coughs all the time, hacking, spits up mucus every single day. He asks me to beat on his back to make it easier to come up. I do not know if this is significant, but he sweats a lot at night.
 
H

Heidi

New member
My husband has had a neagative sweat test, and we think he is a carrier of DF508. He has a lot of respiratory issues. His mother says he coughed all his life. He was adopted, so his family health history is unknown. Ever since I met him, I have thought, "wow, he has the worst asthma of anyone I have ever known." He has not been that good about seeking out good medical care, mostly just going in when he absolutely could not breathe. Recently, he switched to a highly recommended pulmonary dr. He has been taking Singulair, Advair, and occasionally albuterol for a long time. At the most recent appt., his O2 was 95%. He could not remember what his PFT's were, but the pulm dr said he has a lot of scarring on his longs, similiar to a heavy smoker. He has never smoked. He coughs all the time, hacking, spits up mucus every single day. He asks me to beat on his back to make it easier to come up. I do not know if this is significant, but he sweats a lot at night.
 
S

SaltyAndSweet

New member
Thanks everyone. Mom's still in the hospital (was supposed to be out Tuesday). Her fever spikes, then goes down, then back up. Like a roller coaster. Her O2 levels are doing the same, from 95% to 85% and back up again. They have no idea what is going on with her. More tests tomorrow.
Thanks again.
 
S

SaltyAndSweet

New member
Thanks everyone. Mom's still in the hospital (was supposed to be out Tuesday). Her fever spikes, then goes down, then back up. Like a roller coaster. Her O2 levels are doing the same, from 95% to 85% and back up again. They have no idea what is going on with her. More tests tomorrow.
Thanks again.
 
S

SaltyAndSweet

New member
Thanks everyone. Mom's still in the hospital (was supposed to be out Tuesday). Her fever spikes, then goes down, then back up. Like a roller coaster. Her O2 levels are doing the same, from 95% to 85% and back up again. They have no idea what is going on with her. More tests tomorrow.
Thanks again.
 
S

SaltyAndSweet

New member
Thanks everyone. Mom's still in the hospital (was supposed to be out Tuesday). Her fever spikes, then goes down, then back up. Like a roller coaster. Her O2 levels are doing the same, from 95% to 85% and back up again. They have no idea what is going on with her. More tests tomorrow.
Thanks again.
 
S

SaltyAndSweet

New member
Thanks everyone. Mom's still in the hospital (was supposed to be out Tuesday). Her fever spikes, then goes down, then back up. Like a roller coaster. Her O2 levels are doing the same, from 95% to 85% and back up again. They have no idea what is going on with her. More tests tomorrow.
<br />Thanks again.
 
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