Concerned. Husband is coughing more than usual.

[GrantsWife]

I am concerned because the last time he was coughing a lot, he was visiting me in the US. I didn't know much about his disease at the time and didn't see the warning signs. When we arrived back to his home in Canada he was scheduled for a routine checkup since he had been gone for 4 months. He ended up having pneumonia and staying in the hospital for 3 weeks. I was terrified.

Ever since then I have tried to help him as much as I can. Whether that is making sure he did his nebs, took his vitamins, or ate plenty of food, I try to do what I can just to let him know I am there to help him. Lately he has been coughing more and I understand that most have bad days but this has been going on for a week. He went for an appointment about 3 weeks ago and didn't get a call about his sputum or xray but I still feel it is necessary for him to go back to the doctor.

Am I being overly cautious and should wait it out?
Or am I right and should encourage him to see a doctor?

 

[GrantsWife]

I am concerned because the last time he was coughing a lot, he was visiting me in the US. I didn't know much about his disease at the time and didn't see the warning signs. When we arrived back to his home in Canada he was scheduled for a routine checkup since he had been gone for 4 months. He ended up having pneumonia and staying in the hospital for 3 weeks. I was terrified.

Ever since then I have tried to help him as much as I can. Whether that is making sure he did his nebs, took his vitamins, or ate plenty of food, I try to do what I can just to let him know I am there to help him. Lately he has been coughing more and I understand that most have bad days but this has been going on for a week. He went for an appointment about 3 weeks ago and didn't get a call about his sputum or xray but I still feel it is necessary for him to go back to the doctor.

Am I being overly cautious and should wait it out?
Or am I right and should encourage him to see a doctor?

 

[GrantsWife]

I am concerned because the last time he was coughing a lot, he was visiting me in the US. I didn't know much about his disease at the time and didn't see the warning signs. When we arrived back to his home in Canada he was scheduled for a routine checkup since he had been gone for 4 months. He ended up having pneumonia and staying in the hospital for 3 weeks. I was terrified.
<br />
<br />Ever since then I have tried to help him as much as I can. Whether that is making sure he did his nebs, took his vitamins, or ate plenty of food, I try to do what I can just to let him know I am there to help him. Lately he has been coughing more and I understand that most have bad days but this has been going on for a week. He went for an appointment about 3 weeks ago and didn't get a call about his sputum or xray but I still feel it is necessary for him to go back to the doctor.
<br />
<br />Am I being overly cautious and should wait it out?
<br />Or am I right and should encourage him to see a doctor?

 

[jpetersen]

He should know what to do by now and listen to you if you say his cough is worse. It would behoove him to listen to you, as my wife can predict issues at least a month out with an increased cough or change in my cough smell. If he's the "I don't like doctors type" at this point, tell him to man up and get his own forum profile so we can talk to him directly so he can manage his own health. Don't you guys have a CF coordinator to tell them about his changes in symptoms?

 

[jpetersen]

He should know what to do by now and listen to you if you say his cough is worse. It would behoove him to listen to you, as my wife can predict issues at least a month out with an increased cough or change in my cough smell. If he's the "I don't like doctors type" at this point, tell him to man up and get his own forum profile so we can talk to him directly so he can manage his own health. Don't you guys have a CF coordinator to tell them about his changes in symptoms?

 

[jpetersen]

He should know what to do by now and listen to you if you say his cough is worse. It would behoove him to listen to you, as my wife can predict issues at least a month out with an increased cough or change in my cough smell. If he's the "I don't like doctors type" at this point, tell him to man up and get his own forum profile so we can talk to him directly so he can manage his own health. Don't you guys have a CF coordinator to tell them about his changes in symptoms?

 

[GrantsWife]

He has been very used to his mom helping him with problems or his doctors telling him when something is wrong. He doesn't understand that once you get to the adult clinic, your health is your responsibility. I just don't want him to wait until it is too late.

And he doesn't mind doctors, he just doesn't know any symptoms because his doctors haven't shared it with him. He has only been hospitalized once and even then he couldn't really tell he was getting sick. As for him coming on the forums, he isn't one for forums and is also busy working all the time and when he isn't working, he is sleeping.

Thanks for replying back, I was hoping you would. I did read on here about exacerbation's so I figured I would look up the symptoms. They do seem fairly similar to his except his does not have shortness of breath or fatique, however he is coughing more and producing more mucus. What is your opinion on this?

 

[GrantsWife]

He has been very used to his mom helping him with problems or his doctors telling him when something is wrong. He doesn't understand that once you get to the adult clinic, your health is your responsibility. I just don't want him to wait until it is too late.

And he doesn't mind doctors, he just doesn't know any symptoms because his doctors haven't shared it with him. He has only been hospitalized once and even then he couldn't really tell he was getting sick. As for him coming on the forums, he isn't one for forums and is also busy working all the time and when he isn't working, he is sleeping.

Thanks for replying back, I was hoping you would. I did read on here about exacerbation's so I figured I would look up the symptoms. They do seem fairly similar to his except his does not have shortness of breath or fatique, however he is coughing more and producing more mucus. What is your opinion on this?

 

[GrantsWife]

He has been very used to his mom helping him with problems or his doctors telling him when something is wrong. He doesn't understand that once you get to the adult clinic, your health is your responsibility. I just don't want him to wait until it is too late.
<br />
<br />And he doesn't mind doctors, he just doesn't know any symptoms because his doctors haven't shared it with him. He has only been hospitalized once and even then he couldn't really tell he was getting sick. As for him coming on the forums, he isn't one for forums and is also busy working all the time and when he isn't working, he is sleeping.
<br />
<br />Thanks for replying back, I was hoping you would. I did read on here about exacerbation's so I figured I would look up the symptoms. They do seem fairly similar to his except his does not have shortness of breath or fatique, however he is coughing more and producing more mucus. What is your opinion on this?

 

[LouLou]

You and he should write down what his baseline consists of. Ask questions like can he walk up a flight of stairs without getting winded? Can he walk and keep up with you or is he wanting to slow the pace down? How many Tbsp. of mucus is he coughing out? Is it darker, thicker, etc. than usual? Is he sleeping more? Is he having fevers? Is he waking during the night (if baseline is usually not)? Is he maintaining or loosing weight? Is his appetite off? Activity level tolerance, Etc.

It's time for him to establish criteria of what his baseline is other than just FEV1 as measured when he goes into the drs office. Then when the baseline has been down for a week. If he hasn't kicked his care routine into overdrive you help him to come to the conclusion that it is time. Then say in a week if it is no better - again as measured by your written matrix you two make - then it is time to go in. In the meantime he can communicate his plan with the cf coordinator or doctor for advice. And if at any point things take a turn for the worse then it's time to report to the doctor.

What is his FEV1 again? It sounds like he's at least low 70s or higher. I didn't start having "exacerbations" until I dropped below 70% FEV1. Before that it was only head colds that started a chest cold and sometimes it didn't resolve on its own. I never got randomly "chest cold sick" until my FEV1 was in the 60s. I guess it depends on the person but I just thought I'd mention that because it might not be so much a lack of him understanding or caring but rather that his cf isn't like many of our cases yet. It has a tendency to sneak up and then we can't see the wood from the trees. The matrix and your outside perspective should help.

 

[LouLou]

You and he should write down what his baseline consists of. Ask questions like can he walk up a flight of stairs without getting winded? Can he walk and keep up with you or is he wanting to slow the pace down? How many Tbsp. of mucus is he coughing out? Is it darker, thicker, etc. than usual? Is he sleeping more? Is he having fevers? Is he waking during the night (if baseline is usually not)? Is he maintaining or loosing weight? Is his appetite off? Activity level tolerance, Etc.

It's time for him to establish criteria of what his baseline is other than just FEV1 as measured when he goes into the drs office. Then when the baseline has been down for a week. If he hasn't kicked his care routine into overdrive you help him to come to the conclusion that it is time. Then say in a week if it is no better - again as measured by your written matrix you two make - then it is time to go in. In the meantime he can communicate his plan with the cf coordinator or doctor for advice. And if at any point things take a turn for the worse then it's time to report to the doctor.

What is his FEV1 again? It sounds like he's at least low 70s or higher. I didn't start having "exacerbations" until I dropped below 70% FEV1. Before that it was only head colds that started a chest cold and sometimes it didn't resolve on its own. I never got randomly "chest cold sick" until my FEV1 was in the 60s. I guess it depends on the person but I just thought I'd mention that because it might not be so much a lack of him understanding or caring but rather that his cf isn't like many of our cases yet. It has a tendency to sneak up and then we can't see the wood from the trees. The matrix and your outside perspective should help.

 

[LouLou]

You and he should write down what his baseline consists of. Ask questions like can he walk up a flight of stairs without getting winded? Can he walk and keep up with you or is he wanting to slow the pace down? How many Tbsp. of mucus is he coughing out? Is it darker, thicker, etc. than usual? Is he sleeping more? Is he having fevers? Is he waking during the night (if baseline is usually not)? Is he maintaining or loosing weight? Is his appetite off? Activity level tolerance, Etc.
<br />
<br />It's time for him to establish criteria of what his baseline is other than just FEV1 as measured when he goes into the drs office. Then when the baseline has been down for a week. If he hasn't kicked his care routine into overdrive you help him to come to the conclusion that it is time. Then say in a week if it is no better - again as measured by your written matrix you two make - then it is time to go in. In the meantime he can communicate his plan with the cf coordinator or doctor for advice. And if at any point things take a turn for the worse then it's time to report to the doctor.
<br />
<br />What is his FEV1 again? It sounds like he's at least low 70s or higher. I didn't start having "exacerbations" until I dropped below 70% FEV1. Before that it was only head colds that started a chest cold and sometimes it didn't resolve on its own. I never got randomly "chest cold sick" until my FEV1 was in the 60s. I guess it depends on the person but I just thought I'd mention that because it might not be so much a lack of him understanding or caring but rather that his cf isn't like many of our cases yet. It has a tendency to sneak up and then we can't see the wood from the trees. The matrix and your outside perspective should help.

 

[GrantsWife]

Thank you so much LouLou that is a very good idea. We can definitely do that.
Well I don't know what the old system was that he went by but he was in the high 60's then in the past couple of months they switched to counting by litres and got a new doctor since his old one moved away. This recent PFT result was 53%. The new doctor said not to be alarmed yet since there is no way to really compare the old results to the new ones since they switched to using litres and that PFT results are dependent on how you can be feeling that day.

We both still are concerned since nobody really explaining how his old results measured up to his new results so we don't know if he is doing bad or at about the same level. Hope I haven't lost you here, it is just hard to describe. I think they said he was breathing out or in (not sure) 2.4 or so litres. Again not sure how accurate that is. On the old system he used to be at 77% then visited me to the US for 4 months and dropped down to 43% or so and that is when he went in for his first hospitalization. Ever since then he has worked hard to raise it up.

 

[GrantsWife]

Thank you so much LouLou that is a very good idea. We can definitely do that.
Well I don't know what the old system was that he went by but he was in the high 60's then in the past couple of months they switched to counting by litres and got a new doctor since his old one moved away. This recent PFT result was 53%. The new doctor said not to be alarmed yet since there is no way to really compare the old results to the new ones since they switched to using litres and that PFT results are dependent on how you can be feeling that day.

We both still are concerned since nobody really explaining how his old results measured up to his new results so we don't know if he is doing bad or at about the same level. Hope I haven't lost you here, it is just hard to describe. I think they said he was breathing out or in (not sure) 2.4 or so litres. Again not sure how accurate that is. On the old system he used to be at 77% then visited me to the US for 4 months and dropped down to 43% or so and that is when he went in for his first hospitalization. Ever since then he has worked hard to raise it up.

 

[GrantsWife]

Thank you so much LouLou that is a very good idea. We can definitely do that.
<br />Well I don't know what the old system was that he went by but he was in the high 60's then in the past couple of months they switched to counting by litres and got a new doctor since his old one moved away. This recent PFT result was 53%. The new doctor said not to be alarmed yet since there is no way to really compare the old results to the new ones since they switched to using litres and that PFT results are dependent on how you can be feeling that day.
<br />
<br />We both still are concerned since nobody really explaining how his old results measured up to his new results so we don't know if he is doing bad or at about the same level. Hope I haven't lost you here, it is just hard to describe. I think they said he was breathing out or in (not sure) 2.4 or so litres. Again not sure how accurate that is. On the old system he used to be at 77% then visited me to the US for 4 months and dropped down to 43% or so and that is when he went in for his first hospitalization. Ever since then he has worked hard to raise it up.

 

[GrantsWife]

Also, I don't know if it helps any but back in February he began to feel a sharp pain near his right ribs. It got so bad that it hurt to breath and so I convinced him to go to the doctor. They took an xray and found a plueral effusion with fluid build up around his lungs. He only had pain but no decrease in PFT results, loss of appetite, or was sick. Doctors scheduled to draw the fluid out to relieve the pain and test it. On the day he was to get it done, they were about to start but started an ultrasound to see exactly where they needed to insert it when they started.

Strangely enough the fluid has disappeared. They released him and never ordered to do it again. Ever since then, he still has a random pain so it seems like the pain has never really gone away. A month ago he went back for a routine checkup and he mentioned that it wasn't bothering him too much but he was concerned about it. They did an xray but we have yet to hear anything back from it.

I am just wondering if any of this could have some influence. Has anyone experienced this?

 

[GrantsWife]

Also, I don't know if it helps any but back in February he began to feel a sharp pain near his right ribs. It got so bad that it hurt to breath and so I convinced him to go to the doctor. They took an xray and found a plueral effusion with fluid build up around his lungs. He only had pain but no decrease in PFT results, loss of appetite, or was sick. Doctors scheduled to draw the fluid out to relieve the pain and test it. On the day he was to get it done, they were about to start but started an ultrasound to see exactly where they needed to insert it when they started.

Strangely enough the fluid has disappeared. They released him and never ordered to do it again. Ever since then, he still has a random pain so it seems like the pain has never really gone away. A month ago he went back for a routine checkup and he mentioned that it wasn't bothering him too much but he was concerned about it. They did an xray but we have yet to hear anything back from it.

I am just wondering if any of this could have some influence. Has anyone experienced this?

 

[GrantsWife]

Also, I don't know if it helps any but back in February he began to feel a sharp pain near his right ribs. It got so bad that it hurt to breath and so I convinced him to go to the doctor. They took an xray and found a plueral effusion with fluid build up around his lungs. He only had pain but no decrease in PFT results, loss of appetite, or was sick. Doctors scheduled to draw the fluid out to relieve the pain and test it. On the day he was to get it done, they were about to start but started an ultrasound to see exactly where they needed to insert it when they started.
<br />
<br />Strangely enough the fluid has disappeared. They released him and never ordered to do it again. Ever since then, he still has a random pain so it seems like the pain has never really gone away. A month ago he went back for a routine checkup and he mentioned that it wasn't bothering him too much but he was concerned about it. They did an xray but we have yet to hear anything back from it.
<br />
<br />I am just wondering if any of this could have some influence. Has anyone experienced this?