Hubby has clinic today.

GrantsWife

New member
I guess I am a bit more nervous than usual being it is around Christmas. I know he will do good but I guess I just need to go where the worrying is understood and have encouragement. If I don't keep myself positive then how can I stay positive and encouraging for him. If he is nervous, I need to give him the support he deserves. Last time we went they did not make it aware to us that they had changed the PFT results to match how everyone else in the world was doing it. They said they changed it to be more of an accurate result and something about going by litres I believe. Anyway, you probably shouldn't ask me about it because it confused me and DH just as much as it does for you all. I have no way of explaining what they meant.

Anyway, the results were a shock to us at first. In the spring of this year his results were mid to high 60's which is good considering that they had dropped down to 43% from mid 70% the previous year and also having an exacerbation. This past time he went in, it was 53%. Our faces were just like <img src="i/expressions/face-icon-small-blush.gif" border="0"> how come the doctors are not worried. Usually if it drops below 10 % that means automatic put in the hospital. Plus I was nervous to hear such a low number after all the great progress he has made since last year. He hasn't had to be hospitalized in almost 2 years. Since we were concerned about the PFT's and how they measured up. The doctor showed us on the computer all of his results (which was awesome to see the progress) and all the things he has cultured.

She reassured us that had they been still totalling the PFT's the way they did before he still would have had a result in the mid 60's and this is why they were not concerned. Also, she showed us that he has not cultured anything since starting Tobramycin which was almost 2 years ago. I loved seeing that. I mean I am sure he still cultures like some bacteria but none of the major ones to be of concern like staph, pseudo, cepacia, etc. Now I didn't expect to be rambling on I just wanted to bring everyone up to the story. I guess I am just nervous seeing as it is near Christmas and also his PFT's being around only 50% scares me for him. If it gets lower, he could be in serious, serious danger right? We know that if he is below 30% he would be talking transplant. I don't want for him to be worried and hospitalized again. So I am just going to try and stay strong and encourage him to do the best he can today. Who knows maybe he will get better than 53%? That would be a great Christmas present.

I just wanted to give an update on hubby for all of you. Hoping you could wish him luck today. It would be appreciated. Hope all of you are staying strong and healthy for the holidays as well. Happy Holidays.
 

GrantsWife

New member
I guess I am a bit more nervous than usual being it is around Christmas. I know he will do good but I guess I just need to go where the worrying is understood and have encouragement. If I don't keep myself positive then how can I stay positive and encouraging for him. If he is nervous, I need to give him the support he deserves. Last time we went they did not make it aware to us that they had changed the PFT results to match how everyone else in the world was doing it. They said they changed it to be more of an accurate result and something about going by litres I believe. Anyway, you probably shouldn't ask me about it because it confused me and DH just as much as it does for you all. I have no way of explaining what they meant.

Anyway, the results were a shock to us at first. In the spring of this year his results were mid to high 60's which is good considering that they had dropped down to 43% from mid 70% the previous year and also having an exacerbation. This past time he went in, it was 53%. Our faces were just like <img src="i/expressions/face-icon-small-blush.gif" border="0"> how come the doctors are not worried. Usually if it drops below 10 % that means automatic put in the hospital. Plus I was nervous to hear such a low number after all the great progress he has made since last year. He hasn't had to be hospitalized in almost 2 years. Since we were concerned about the PFT's and how they measured up. The doctor showed us on the computer all of his results (which was awesome to see the progress) and all the things he has cultured.

She reassured us that had they been still totalling the PFT's the way they did before he still would have had a result in the mid 60's and this is why they were not concerned. Also, she showed us that he has not cultured anything since starting Tobramycin which was almost 2 years ago. I loved seeing that. I mean I am sure he still cultures like some bacteria but none of the major ones to be of concern like staph, pseudo, cepacia, etc. Now I didn't expect to be rambling on I just wanted to bring everyone up to the story. I guess I am just nervous seeing as it is near Christmas and also his PFT's being around only 50% scares me for him. If it gets lower, he could be in serious, serious danger right? We know that if he is below 30% he would be talking transplant. I don't want for him to be worried and hospitalized again. So I am just going to try and stay strong and encourage him to do the best he can today. Who knows maybe he will get better than 53%? That would be a great Christmas present.

I just wanted to give an update on hubby for all of you. Hoping you could wish him luck today. It would be appreciated. Hope all of you are staying strong and healthy for the holidays as well. Happy Holidays.
 

GrantsWife

New member
I guess I am a bit more nervous than usual being it is around Christmas. I know he will do good but I guess I just need to go where the worrying is understood and have encouragement. If I don't keep myself positive then how can I stay positive and encouraging for him. If he is nervous, I need to give him the support he deserves. Last time we went they did not make it aware to us that they had changed the PFT results to match how everyone else in the world was doing it. They said they changed it to be more of an accurate result and something about going by litres I believe. Anyway, you probably shouldn't ask me about it because it confused me and DH just as much as it does for you all. I have no way of explaining what they meant.
<br />
<br />Anyway, the results were a shock to us at first. In the spring of this year his results were mid to high 60's which is good considering that they had dropped down to 43% from mid 70% the previous year and also having an exacerbation. This past time he went in, it was 53%. Our faces were just like <img src="i/expressions/face-icon-small-blush.gif" border="0"> how come the doctors are not worried. Usually if it drops below 10 % that means automatic put in the hospital. Plus I was nervous to hear such a low number after all the great progress he has made since last year. He hasn't had to be hospitalized in almost 2 years. Since we were concerned about the PFT's and how they measured up. The doctor showed us on the computer all of his results (which was awesome to see the progress) and all the things he has cultured.
<br />
<br />She reassured us that had they been still totalling the PFT's the way they did before he still would have had a result in the mid 60's and this is why they were not concerned. Also, she showed us that he has not cultured anything since starting Tobramycin which was almost 2 years ago. I loved seeing that. I mean I am sure he still cultures like some bacteria but none of the major ones to be of concern like staph, pseudo, cepacia, etc. Now I didn't expect to be rambling on I just wanted to bring everyone up to the story. I guess I am just nervous seeing as it is near Christmas and also his PFT's being around only 50% scares me for him. If it gets lower, he could be in serious, serious danger right? We know that if he is below 30% he would be talking transplant. I don't want for him to be worried and hospitalized again. So I am just going to try and stay strong and encourage him to do the best he can today. Who knows maybe he will get better than 53%? That would be a great Christmas present.
<br />
<br />I just wanted to give an update on hubby for all of you. Hoping you could wish him luck today. It would be appreciated. Hope all of you are staying strong and healthy for the holidays as well. Happy Holidays.
 

rubyroselee

New member
Hi Alisha,

The way they calibrate the PFT machine can change from time to time depending on different factors. If he gains or loses wait, the calibration changes...as well as other factors. The other funny thing too is that the PFT machine is different from clinic to clinic. I have been seen at 2 clinics now for awhile, and I get drastically different numbers at each one. I am 85% at one clinic and 95% at the other. They claim they are using the same calibration system, so I'm not sure what the difference is. But just keep in mind that they are really looking at the actual value in liters (rather than the percentage), which should not be drastically different.
 

rubyroselee

New member
Hi Alisha,

The way they calibrate the PFT machine can change from time to time depending on different factors. If he gains or loses wait, the calibration changes...as well as other factors. The other funny thing too is that the PFT machine is different from clinic to clinic. I have been seen at 2 clinics now for awhile, and I get drastically different numbers at each one. I am 85% at one clinic and 95% at the other. They claim they are using the same calibration system, so I'm not sure what the difference is. But just keep in mind that they are really looking at the actual value in liters (rather than the percentage), which should not be drastically different.
 

rubyroselee

New member
Hi Alisha,
<br />
<br />The way they calibrate the PFT machine can change from time to time depending on different factors. If he gains or loses wait, the calibration changes...as well as other factors. The other funny thing too is that the PFT machine is different from clinic to clinic. I have been seen at 2 clinics now for awhile, and I get drastically different numbers at each one. I am 85% at one clinic and 95% at the other. They claim they are using the same calibration system, so I'm not sure what the difference is. But just keep in mind that they are really looking at the actual value in liters (rather than the percentage), which should not be drastically different.
 

GrantsWife

New member
Thanks so much for letting me know that rubyroselee. Sorry I am not all that knowledgable about it but I am trying. You would think though that for such an important matter they would make sure the machines and the calibrations would match. Oh well, we do live in an imperfect world. They said that his litres were 2.3 or 4 I believe. I am assuming that is pretty good or else they would have showed concern.
 

GrantsWife

New member
Thanks so much for letting me know that rubyroselee. Sorry I am not all that knowledgable about it but I am trying. You would think though that for such an important matter they would make sure the machines and the calibrations would match. Oh well, we do live in an imperfect world. They said that his litres were 2.3 or 4 I believe. I am assuming that is pretty good or else they would have showed concern.
 

GrantsWife

New member
Thanks so much for letting me know that rubyroselee. Sorry I am not all that knowledgable about it but I am trying. You would think though that for such an important matter they would make sure the machines and the calibrations would match. Oh well, we do live in an imperfect world. They said that his litres were 2.3 or 4 I believe. I am assuming that is pretty good or else they would have showed concern.
 

GrantsWife

New member
Just wanted to update everyone and let them know that the appointment went great and turns out he is actually healthier than he was five years ago. His PFT was up by 5% to 58% but the doctors checked saying that if they were still going by the old system they were using for percentages, he would actually be in the high 70's. His litres were actually really close to the highest they have ever been. 4-5 years ago they were 2.62 but yesterday they were 2.58 so he is doing great. They said to just keep doing what he has been doing and he should be remaining this healthy. We went out to eat because I was so proud of him. The doctors were too and they were even surprised at just how well he has progressed since a bad exacerbation he had. All I can say is that we are so blessed and I thank God for giving us such amazing news for the holidays. I hope that everyone receives good news too. Also, just wanted to add that they will be adding him on a new oral antibiotic that you take Mondays, Wednesdays, and Fridays to prevent against getting MAC. I can't remember the name of it but if you know what I am talking about, could you share your experience with it. Did you have side effects? Has it helped lung function? Has it prevented from you contracting MAC? The doctors did talk to us about it but I just want to hear to some opinions from those who actually take it.

I just want to say thanks too to anyone who kept us in your thoughts. I will keep everyone here in mine. Happy Holidays.
 

GrantsWife

New member
Just wanted to update everyone and let them know that the appointment went great and turns out he is actually healthier than he was five years ago. His PFT was up by 5% to 58% but the doctors checked saying that if they were still going by the old system they were using for percentages, he would actually be in the high 70's. His litres were actually really close to the highest they have ever been. 4-5 years ago they were 2.62 but yesterday they were 2.58 so he is doing great. They said to just keep doing what he has been doing and he should be remaining this healthy. We went out to eat because I was so proud of him. The doctors were too and they were even surprised at just how well he has progressed since a bad exacerbation he had. All I can say is that we are so blessed and I thank God for giving us such amazing news for the holidays. I hope that everyone receives good news too. Also, just wanted to add that they will be adding him on a new oral antibiotic that you take Mondays, Wednesdays, and Fridays to prevent against getting MAC. I can't remember the name of it but if you know what I am talking about, could you share your experience with it. Did you have side effects? Has it helped lung function? Has it prevented from you contracting MAC? The doctors did talk to us about it but I just want to hear to some opinions from those who actually take it.

I just want to say thanks too to anyone who kept us in your thoughts. I will keep everyone here in mine. Happy Holidays.
 

GrantsWife

New member
Just wanted to update everyone and let them know that the appointment went great and turns out he is actually healthier than he was five years ago. His PFT was up by 5% to 58% but the doctors checked saying that if they were still going by the old system they were using for percentages, he would actually be in the high 70's. His litres were actually really close to the highest they have ever been. 4-5 years ago they were 2.62 but yesterday they were 2.58 so he is doing great. They said to just keep doing what he has been doing and he should be remaining this healthy. We went out to eat because I was so proud of him. The doctors were too and they were even surprised at just how well he has progressed since a bad exacerbation he had. All I can say is that we are so blessed and I thank God for giving us such amazing news for the holidays. I hope that everyone receives good news too. Also, just wanted to add that they will be adding him on a new oral antibiotic that you take Mondays, Wednesdays, and Fridays to prevent against getting MAC. I can't remember the name of it but if you know what I am talking about, could you share your experience with it. Did you have side effects? Has it helped lung function? Has it prevented from you contracting MAC? The doctors did talk to us about it but I just want to hear to some opinions from those who actually take it.
<br />
<br />I just want to say thanks too to anyone who kept us in your thoughts. I will keep everyone here in mine. Happy Holidays.
 

Printer

Active member
Hi:

Glad to know hubby is doing so well. We just celebrated our 48th Wedding Anniversary. I know that you will do that and more.

There is a cure in your future.

Merry Christmas.

Bill
 

Printer

Active member
Hi:

Glad to know hubby is doing so well. We just celebrated our 48th Wedding Anniversary. I know that you will do that and more.

There is a cure in your future.

Merry Christmas.

Bill
 

Printer

Active member
Hi:
<br />
<br />Glad to know hubby is doing so well. We just celebrated our 48th Wedding Anniversary. I know that you will do that and more.
<br />
<br />There is a cure in your future.
<br />
<br />Merry Christmas.
<br />
<br />Bill
 
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