Denufosol Clinical Trial Diary

T

thebiglug

Guest
Although I don't consider myself meek or soon to die at 32 even though I was 'suppose' to die many years ago. Imagination and hope will be with us forever. My take on it is this this drug might not be the cure all but if I can do a very small part in helping the Quality of Life in the future of CF children I feel obligated to do so. Especially with the health I have had and knowing many other people with the horrible disease have and will continue to fight the disease with me. I have had a wonderful life and honestly look forward to the day when the cure arrives until then we hang onto hope. We are up against a battle and an uneven playing field but hell that is life in general and nothing new for us. Light the fires and kick the tires let's get it done.

The Big Lug
 
T

thebiglug

Guest
Although I don't consider myself meek or soon to die at 32 even though I was 'suppose' to die many years ago. Imagination and hope will be with us forever. My take on it is this this drug might not be the cure all but if I can do a very small part in helping the Quality of Life in the future of CF children I feel obligated to do so. Especially with the health I have had and knowing many other people with the horrible disease have and will continue to fight the disease with me. I have had a wonderful life and honestly look forward to the day when the cure arrives until then we hang onto hope. We are up against a battle and an uneven playing field but hell that is life in general and nothing new for us. Light the fires and kick the tires let's get it done.

The Big Lug
 
T

thebiglug

Guest
Although I don't consider myself meek or soon to die at 32 even though I was 'suppose' to die many years ago. Imagination and hope will be with us forever. My take on it is this this drug might not be the cure all but if I can do a very small part in helping the Quality of Life in the future of CF children I feel obligated to do so. Especially with the health I have had and knowing many other people with the horrible disease have and will continue to fight the disease with me. I have had a wonderful life and honestly look forward to the day when the cure arrives until then we hang onto hope. We are up against a battle and an uneven playing field but hell that is life in general and nothing new for us. Light the fires and kick the tires let's get it done.

The Big Lug
 
T

thebiglug

Guest
Although I don't consider myself meek or soon to die at 32 even though I was 'suppose' to die many years ago. Imagination and hope will be with us forever. My take on it is this this drug might not be the cure all but if I can do a very small part in helping the Quality of Life in the future of CF children I feel obligated to do so. Especially with the health I have had and knowing many other people with the horrible disease have and will continue to fight the disease with me. I have had a wonderful life and honestly look forward to the day when the cure arrives until then we hang onto hope. We are up against a battle and an uneven playing field but hell that is life in general and nothing new for us. Light the fires and kick the tires let's get it done.

The Big Lug
 
T

thebiglug

Guest
Although I don't consider myself meek or soon to die at 32 even though I was 'suppose' to die many years ago. Imagination and hope will be with us forever. My take on it is this this drug might not be the cure all but if I can do a very small part in helping the Quality of Life in the future of CF children I feel obligated to do so. Especially with the health I have had and knowing many other people with the horrible disease have and will continue to fight the disease with me. I have had a wonderful life and honestly look forward to the day when the cure arrives until then we hang onto hope. We are up against a battle and an uneven playing field but hell that is life in general and nothing new for us. Light the fires and kick the tires let's get it done.

The Big Lug
 
T

thebiglug

Guest
Today was my first day and appointment for the trial. Although I will not get any type of medication until next week here was what we did today:

-Reviewed and Signed Consent Paperwork
-Medication List Reviewed
-Reviewed Medical History
-Labs drawn
-Chest X-Ray
-Vital Signs
-PFT's (81% FEV1)

It only took about 2 hours for everything. Next week I will go in and do a PFT and get the placebo/drug, 2 compressors and nebs.

The drug has to be neb'd 3 times a day for 15 minutes and 4 hours apart. The only kicker is I had to go off Hypertonic Saline for the trial 2 weeks in advance.

I look forward to next week.....

The Big Lug
 
T

thebiglug

Guest
Today was my first day and appointment for the trial. Although I will not get any type of medication until next week here was what we did today:

-Reviewed and Signed Consent Paperwork
-Medication List Reviewed
-Reviewed Medical History
-Labs drawn
-Chest X-Ray
-Vital Signs
-PFT's (81% FEV1)

It only took about 2 hours for everything. Next week I will go in and do a PFT and get the placebo/drug, 2 compressors and nebs.

The drug has to be neb'd 3 times a day for 15 minutes and 4 hours apart. The only kicker is I had to go off Hypertonic Saline for the trial 2 weeks in advance.

I look forward to next week.....

The Big Lug
 
T

thebiglug

Guest
Today was my first day and appointment for the trial. Although I will not get any type of medication until next week here was what we did today:

-Reviewed and Signed Consent Paperwork
-Medication List Reviewed
-Reviewed Medical History
-Labs drawn
-Chest X-Ray
-Vital Signs
-PFT's (81% FEV1)

It only took about 2 hours for everything. Next week I will go in and do a PFT and get the placebo/drug, 2 compressors and nebs.

The drug has to be neb'd 3 times a day for 15 minutes and 4 hours apart. The only kicker is I had to go off Hypertonic Saline for the trial 2 weeks in advance.

I look forward to next week.....

The Big Lug
 
T

thebiglug

Guest
Today was my first day and appointment for the trial. Although I will not get any type of medication until next week here was what we did today:

-Reviewed and Signed Consent Paperwork
-Medication List Reviewed
-Reviewed Medical History
-Labs drawn
-Chest X-Ray
-Vital Signs
-PFT's (81% FEV1)

It only took about 2 hours for everything. Next week I will go in and do a PFT and get the placebo/drug, 2 compressors and nebs.

The drug has to be neb'd 3 times a day for 15 minutes and 4 hours apart. The only kicker is I had to go off Hypertonic Saline for the trial 2 weeks in advance.

I look forward to next week.....

The Big Lug
 
T

thebiglug

Guest
Today was my first day and appointment for the trial. Although I will not get any type of medication until next week here was what we did today:

-Reviewed and Signed Consent Paperwork
-Medication List Reviewed
-Reviewed Medical History
-Labs drawn
-Chest X-Ray
-Vital Signs
-PFT's (81% FEV1)

It only took about 2 hours for everything. Next week I will go in and do a PFT and get the placebo/drug, 2 compressors and nebs.

The drug has to be neb'd 3 times a day for 15 minutes and 4 hours apart. The only kicker is I had to go off Hypertonic Saline for the trial 2 weeks in advance.

I look forward to next week.....

The Big Lug
 
T

thebiglug

Guest
Good Morning. I started the medicine portion of the Clinical Trial today. Here was the routine and the details:

-8:00 Arrived at Clinic
-Doctor reviewed labs, x-ray, and signed paperwork
-Did vital signs and reviewed my med lists
-Did 3 PFT's- FEV1-80, 81, 82
-They randomized me in the study (Placebo or medicine)
-Went to Pharmacy to pick up medicine
-Did Albuterol
-Did Clinical Trial Medicine (15 Minutes)
-They monitored my heartrate (1 hour) and how much I coughed (2 hours)
-I got the medicine, 2 compressors, 2 nebs, a backpack, a car electric adaptor
-I have to take the medicine 3 X daily for 15 minutes or when done
-Right now I do the albuterol, Pulmozyme (in am only), Vest/Flutter, Defusonol/Placebo, Tobi

-Defusonol/Placebo- The medicine did not have a taste or after taste. It only induced a few coughs with no mucous production in all three times that I took it yesterday. It was clear. It did not have the same effect as HTS has on me. At this point I am assuming I am on the Placebo. I go back in one month and do PFT's and we will see. It's all good becasue I only have 6 months until I know I get the medicine.

The next step is to do another 1 hour clinical visit in 1 month. This is when I will have a good take on if I am on the placebo with the PFT's.

Hope all is well with everyone.
 
T

thebiglug

Guest
Good Morning. I started the medicine portion of the Clinical Trial today. Here was the routine and the details:

-8:00 Arrived at Clinic
-Doctor reviewed labs, x-ray, and signed paperwork
-Did vital signs and reviewed my med lists
-Did 3 PFT's- FEV1-80, 81, 82
-They randomized me in the study (Placebo or medicine)
-Went to Pharmacy to pick up medicine
-Did Albuterol
-Did Clinical Trial Medicine (15 Minutes)
-They monitored my heartrate (1 hour) and how much I coughed (2 hours)
-I got the medicine, 2 compressors, 2 nebs, a backpack, a car electric adaptor
-I have to take the medicine 3 X daily for 15 minutes or when done
-Right now I do the albuterol, Pulmozyme (in am only), Vest/Flutter, Defusonol/Placebo, Tobi

-Defusonol/Placebo- The medicine did not have a taste or after taste. It only induced a few coughs with no mucous production in all three times that I took it yesterday. It was clear. It did not have the same effect as HTS has on me. At this point I am assuming I am on the Placebo. I go back in one month and do PFT's and we will see. It's all good becasue I only have 6 months until I know I get the medicine.

The next step is to do another 1 hour clinical visit in 1 month. This is when I will have a good take on if I am on the placebo with the PFT's.

Hope all is well with everyone.
 
T

thebiglug

Guest
Good Morning. I started the medicine portion of the Clinical Trial today. Here was the routine and the details:

-8:00 Arrived at Clinic
-Doctor reviewed labs, x-ray, and signed paperwork
-Did vital signs and reviewed my med lists
-Did 3 PFT's- FEV1-80, 81, 82
-They randomized me in the study (Placebo or medicine)
-Went to Pharmacy to pick up medicine
-Did Albuterol
-Did Clinical Trial Medicine (15 Minutes)
-They monitored my heartrate (1 hour) and how much I coughed (2 hours)
-I got the medicine, 2 compressors, 2 nebs, a backpack, a car electric adaptor
-I have to take the medicine 3 X daily for 15 minutes or when done
-Right now I do the albuterol, Pulmozyme (in am only), Vest/Flutter, Defusonol/Placebo, Tobi

-Defusonol/Placebo- The medicine did not have a taste or after taste. It only induced a few coughs with no mucous production in all three times that I took it yesterday. It was clear. It did not have the same effect as HTS has on me. At this point I am assuming I am on the Placebo. I go back in one month and do PFT's and we will see. It's all good becasue I only have 6 months until I know I get the medicine.

The next step is to do another 1 hour clinical visit in 1 month. This is when I will have a good take on if I am on the placebo with the PFT's.

Hope all is well with everyone.
 
T

thebiglug

Guest
Good Morning. I started the medicine portion of the Clinical Trial today. Here was the routine and the details:

-8:00 Arrived at Clinic
-Doctor reviewed labs, x-ray, and signed paperwork
-Did vital signs and reviewed my med lists
-Did 3 PFT's- FEV1-80, 81, 82
-They randomized me in the study (Placebo or medicine)
-Went to Pharmacy to pick up medicine
-Did Albuterol
-Did Clinical Trial Medicine (15 Minutes)
-They monitored my heartrate (1 hour) and how much I coughed (2 hours)
-I got the medicine, 2 compressors, 2 nebs, a backpack, a car electric adaptor
-I have to take the medicine 3 X daily for 15 minutes or when done
-Right now I do the albuterol, Pulmozyme (in am only), Vest/Flutter, Defusonol/Placebo, Tobi

-Defusonol/Placebo- The medicine did not have a taste or after taste. It only induced a few coughs with no mucous production in all three times that I took it yesterday. It was clear. It did not have the same effect as HTS has on me. At this point I am assuming I am on the Placebo. I go back in one month and do PFT's and we will see. It's all good becasue I only have 6 months until I know I get the medicine.

The next step is to do another 1 hour clinical visit in 1 month. This is when I will have a good take on if I am on the placebo with the PFT's.

Hope all is well with everyone.
 
T

thebiglug

Guest
Good Morning. I started the medicine portion of the Clinical Trial today. Here was the routine and the details:

-8:00 Arrived at Clinic
-Doctor reviewed labs, x-ray, and signed paperwork
-Did vital signs and reviewed my med lists
-Did 3 PFT's- FEV1-80, 81, 82
-They randomized me in the study (Placebo or medicine)
-Went to Pharmacy to pick up medicine
-Did Albuterol
-Did Clinical Trial Medicine (15 Minutes)
-They monitored my heartrate (1 hour) and how much I coughed (2 hours)
-I got the medicine, 2 compressors, 2 nebs, a backpack, a car electric adaptor
-I have to take the medicine 3 X daily for 15 minutes or when done
-Right now I do the albuterol, Pulmozyme (in am only), Vest/Flutter, Defusonol/Placebo, Tobi

-Defusonol/Placebo- The medicine did not have a taste or after taste. It only induced a few coughs with no mucous production in all three times that I took it yesterday. It was clear. It did not have the same effect as HTS has on me. At this point I am assuming I am on the Placebo. I go back in one month and do PFT's and we will see. It's all good becasue I only have 6 months until I know I get the medicine.

The next step is to do another 1 hour clinical visit in 1 month. This is when I will have a good take on if I am on the placebo with the PFT's.

Hope all is well with everyone.
 
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