Decline in PFTs

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truckin4tucker

New member
My son Tucker has had a significant decline in his PFTs over the past year. So at his last clinic visit they switched him from Pulmozyme to HTS. He was to be on the HTS 14 days and then go back for more PFTs. When we took him back, his PFTs dropped....again! Now he is back on the pulmozyme and has been on it for 10 days. He goes back tomorrow for more PFTs, chest x-ray, throat culture, and to meet with the doctor to figure out a "plan". Up until his last hospital stay he was admitted to the hospital about every 9 to 12 months for a tune up. It has been a litte over 1 1/2 years since he was last in. He doesn't have a cough, other than an occasional one to clear his throat, his activity level and appetite are pretty good as well. The only concern is his continual drop in his PFTs. Is there a chance that they may admit him for a "tune up" in hopes of improving his PFTs, or is this out of the question since he is really showing no other symptoms of any type of CF infection. If anyone could give me some input as to what maybe to expect, i would greatly appreciate it! Thanks!
 
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truckin4tucker

New member
My son Tucker has had a significant decline in his PFTs over the past year. So at his last clinic visit they switched him from Pulmozyme to HTS. He was to be on the HTS 14 days and then go back for more PFTs. When we took him back, his PFTs dropped....again! Now he is back on the pulmozyme and has been on it for 10 days. He goes back tomorrow for more PFTs, chest x-ray, throat culture, and to meet with the doctor to figure out a "plan". Up until his last hospital stay he was admitted to the hospital about every 9 to 12 months for a tune up. It has been a litte over 1 1/2 years since he was last in. He doesn't have a cough, other than an occasional one to clear his throat, his activity level and appetite are pretty good as well. The only concern is his continual drop in his PFTs. Is there a chance that they may admit him for a "tune up" in hopes of improving his PFTs, or is this out of the question since he is really showing no other symptoms of any type of CF infection. If anyone could give me some input as to what maybe to expect, i would greatly appreciate it! Thanks!
 
T

truckin4tucker

New member
My son Tucker has had a significant decline in his PFTs over the past year. So at his last clinic visit they switched him from Pulmozyme to HTS. He was to be on the HTS 14 days and then go back for more PFTs. When we took him back, his PFTs dropped....again! Now he is back on the pulmozyme and has been on it for 10 days. He goes back tomorrow for more PFTs, chest x-ray, throat culture, and to meet with the doctor to figure out a "plan". Up until his last hospital stay he was admitted to the hospital about every 9 to 12 months for a tune up. It has been a litte over 1 1/2 years since he was last in. He doesn't have a cough, other than an occasional one to clear his throat, his activity level and appetite are pretty good as well. The only concern is his continual drop in his PFTs. Is there a chance that they may admit him for a "tune up" in hopes of improving his PFTs, or is this out of the question since he is really showing no other symptoms of any type of CF infection. If anyone could give me some input as to what maybe to expect, i would greatly appreciate it! Thanks!
 
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ehtansky21

New member
we had the same exact thing happen to us...except they had us on pulmozyme and hts. Docs say, they do different things to the lungs.
They said the next visit if the PFTs aren't up they would admit him.
I didn't feel that Ethan was doing his PFTs the right way all the time, so we practiced them like crazy, and when we got to the docs, I made sure that the best RT they had was going to do the PFTs.
Thankfully, PFTs were up and no hospital stay.

Praying things go well!!!!

missa
 
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ehtansky21

New member
we had the same exact thing happen to us...except they had us on pulmozyme and hts. Docs say, they do different things to the lungs.
They said the next visit if the PFTs aren't up they would admit him.
I didn't feel that Ethan was doing his PFTs the right way all the time, so we practiced them like crazy, and when we got to the docs, I made sure that the best RT they had was going to do the PFTs.
Thankfully, PFTs were up and no hospital stay.

Praying things go well!!!!

missa
 
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ehtansky21

New member
we had the same exact thing happen to us...except they had us on pulmozyme and hts. Docs say, they do different things to the lungs.
<br />They said the next visit if the PFTs aren't up they would admit him.
<br />I didn't feel that Ethan was doing his PFTs the right way all the time, so we practiced them like crazy, and when we got to the docs, I made sure that the best RT they had was going to do the PFTs.
<br />Thankfully, PFTs were up and no hospital stay.
<br />
<br />Praying things go well!!!!
<br />
<br />missa
 
S

Sheridan

New member
What about ABPA, it plays havoc with my sons PFT's. We have also done Pulmozyme and HTS together. Although we discuvoered the the HTS made his lungs reactive and tighten up so we had to stop.
 
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Sheridan

New member
What about ABPA, it plays havoc with my sons PFT's. We have also done Pulmozyme and HTS together. Although we discuvoered the the HTS made his lungs reactive and tighten up so we had to stop.
 
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Sheridan

New member
What about ABPA, it plays havoc with my sons PFT's. We have also done Pulmozyme and HTS together. Although we discuvoered the the HTS made his lungs reactive and tighten up so we had to stop.
 
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LouLou

New member
Yes. And to quote Warwick loosely, "If the home care plan is failing then admission for IV antiobiotic therapy is necessary."

Think of it as a blessing really. 14 days flies by and Yale (my clinic) only keeps peds in for a few days if the parents are competent and child has a good support system to care for him the remaining 10 days at home on IVs. Of course, there's a lot more that goes into the decision of whether or not a child can finish their course at home like overall stabililty, etc.

Every day that his pfts are down it is more likely the lungs will suffer a permanent loss.

Why not HTS and Pulmozyme? They do not work in the same way or interact?! Finally, how many neb/cpt sessions are you doing a day? If 3-4 is not possible at home then that would be an add'l benefit of the hospital.

Take care!

Lauren 32 with cf and son 3 with cf.
 
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LouLou

New member
Yes. And to quote Warwick loosely, "If the home care plan is failing then admission for IV antiobiotic therapy is necessary."

Think of it as a blessing really. 14 days flies by and Yale (my clinic) only keeps peds in for a few days if the parents are competent and child has a good support system to care for him the remaining 10 days at home on IVs. Of course, there's a lot more that goes into the decision of whether or not a child can finish their course at home like overall stabililty, etc.

Every day that his pfts are down it is more likely the lungs will suffer a permanent loss.

Why not HTS and Pulmozyme? They do not work in the same way or interact?! Finally, how many neb/cpt sessions are you doing a day? If 3-4 is not possible at home then that would be an add'l benefit of the hospital.

Take care!

Lauren 32 with cf and son 3 with cf.
 
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LouLou

New member
Yes. And to quote Warwick loosely, "If the home care plan is failing then admission for IV antiobiotic therapy is necessary."
<br />
<br />Think of it as a blessing really. 14 days flies by and Yale (my clinic) only keeps peds in for a few days if the parents are competent and child has a good support system to care for him the remaining 10 days at home on IVs. Of course, there's a lot more that goes into the decision of whether or not a child can finish their course at home like overall stabililty, etc.
<br />
<br />Every day that his pfts are down it is more likely the lungs will suffer a permanent loss.
<br />
<br />Why not HTS and Pulmozyme? They do not work in the same way or interact?! Finally, how many neb/cpt sessions are you doing a day? If 3-4 is not possible at home then that would be an add'l benefit of the hospital.
<br />
<br />Take care!
<br />
<br />Lauren 32 with cf and son 3 with cf.
 
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truckin4tucker

New member
Got good news. His initial PFT today was not much improved, but chest x-ray looked essentially unchanged from his last one. They decided to give him some Albuterol before doing another set of PFTs. Well, that was the trick. His PFTs were back at his baseline after that. They figure he's having bronchial spasms, causing the decline in PFTs. So, now we just have to give him 2 puffs Albuterol 2x/day, and that should solve the problem! Thank God!!!
 
T

truckin4tucker

New member
Got good news. His initial PFT today was not much improved, but chest x-ray looked essentially unchanged from his last one. They decided to give him some Albuterol before doing another set of PFTs. Well, that was the trick. His PFTs were back at his baseline after that. They figure he's having bronchial spasms, causing the decline in PFTs. So, now we just have to give him 2 puffs Albuterol 2x/day, and that should solve the problem! Thank God!!!
 
T

truckin4tucker

New member
Got good news. His initial PFT today was not much improved, but chest x-ray looked essentially unchanged from his last one. They decided to give him some Albuterol before doing another set of PFTs. Well, that was the trick. His PFTs were back at his baseline after that. They figure he's having bronchial spasms, causing the decline in PFTs. So, now we just have to give him 2 puffs Albuterol 2x/day, and that should solve the problem! Thank God!!!
 
T

truckin4tucker

New member
Got good news. His initial PFT today was not much improved, but chest x-ray looked essentially unchanged from his last one. They decided to give him some Albuterol before doing another set of PFTs. Well, that was the trick. His PFTs were back at his baseline after that. They figure he's having bronchial spasms, causing the decline in PFTs. So, now we just have to give him 2 puffs Albuterol 2x/day, and that should solve the problem! Thank God!!!
 
T

truckin4tucker

New member
Got good news. His initial PFT today was not much improved, but chest x-ray looked essentially unchanged from his last one. They decided to give him some Albuterol before doing another set of PFTs. Well, that was the trick. His PFTs were back at his baseline after that. They figure he's having bronchial spasms, causing the decline in PFTs. So, now we just have to give him 2 puffs Albuterol 2x/day, and that should solve the problem! Thank God!!!
 
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