Poll: PHR

sheanna

New member
I have one of those huge file folder things. It was a promotional thing from pulmozyme a couple years ago. It works great, and there are categories for PFTS, nutrition, lab results, etc.
 

sheanna

New member
I have one of those huge file folder things. It was a promotional thing from pulmozyme a couple years ago. It works great, and there are categories for PFTS, nutrition, lab results, etc.
 

sheanna

New member
I have one of those huge file folder things. It was a promotional thing from pulmozyme a couple years ago. It works great, and there are categories for PFTS, nutrition, lab results, etc.
 

sheanna

New member
I have one of those huge file folder things. It was a promotional thing from pulmozyme a couple years ago. It works great, and there are categories for PFTS, nutrition, lab results, etc.
 

sheanna

New member
I have one of those huge file folder things. It was a promotional thing from pulmozyme a couple years ago. It works great, and there are categories for PFTS, nutrition, lab results, etc.
 

Buckeye

New member
I have a notebook that I take to the appointments and write info in. At one point I tried to put that all on the computer each time I came home, but now I just leave it in the notebook in the handwritten version.In addition I do have one excel spreadsheet that list all his meds and upcoming appointments with specialists and another that is a medical history of my son listing dates of x-rays, cat scans, tests, etc (since he has more going on that just CF this one is crucial to keep all the doctor's up to date) and I take both of these spreadsheets with me to every doctor's appointment.After each doctor's appointment I file the appointment summaries (printout given by hospital/doctor's office) in a file folder in my desk filed by specialist. Before I go to that specialist again I pull the folder out and review the last visit.I personally do not want to use one of the online services. I know that the Cleveland Clinic offers one and I have received info on other ones through the mail, but at this time I question the safety/security of those.
 

Buckeye

New member
I have a notebook that I take to the appointments and write info in. At one point I tried to put that all on the computer each time I came home, but now I just leave it in the notebook in the handwritten version.In addition I do have one excel spreadsheet that list all his meds and upcoming appointments with specialists and another that is a medical history of my son listing dates of x-rays, cat scans, tests, etc (since he has more going on that just CF this one is crucial to keep all the doctor's up to date) and I take both of these spreadsheets with me to every doctor's appointment.After each doctor's appointment I file the appointment summaries (printout given by hospital/doctor's office) in a file folder in my desk filed by specialist. Before I go to that specialist again I pull the folder out and review the last visit.I personally do not want to use one of the online services. I know that the Cleveland Clinic offers one and I have received info on other ones through the mail, but at this time I question the safety/security of those.
 

Buckeye

New member
I have a notebook that I take to the appointments and write info in. At one point I tried to put that all on the computer each time I came home, but now I just leave it in the notebook in the handwritten version.In addition I do have one excel spreadsheet that list all his meds and upcoming appointments with specialists and another that is a medical history of my son listing dates of x-rays, cat scans, tests, etc (since he has more going on that just CF this one is crucial to keep all the doctor's up to date) and I take both of these spreadsheets with me to every doctor's appointment.After each doctor's appointment I file the appointment summaries (printout given by hospital/doctor's office) in a file folder in my desk filed by specialist. Before I go to that specialist again I pull the folder out and review the last visit.I personally do not want to use one of the online services. I know that the Cleveland Clinic offers one and I have received info on other ones through the mail, but at this time I question the safety/security of those.
 

Buckeye

New member
I have a notebook that I take to the appointments and write info in. At one point I tried to put that all on the computer each time I came home, but now I just leave it in the notebook in the handwritten version.In addition I do have one excel spreadsheet that list all his meds and upcoming appointments with specialists and another that is a medical history of my son listing dates of x-rays, cat scans, tests, etc (since he has more going on that just CF this one is crucial to keep all the doctor's up to date) and I take both of these spreadsheets with me to every doctor's appointment.After each doctor's appointment I file the appointment summaries (printout given by hospital/doctor's office) in a file folder in my desk filed by specialist. Before I go to that specialist again I pull the folder out and review the last visit.I personally do not want to use one of the online services. I know that the Cleveland Clinic offers one and I have received info on other ones through the mail, but at this time I question the safety/security of those.
 

Buckeye

New member
<p>I have a notebook that I take to the appointments and write info in. At one point I tried to put that all on the computer each time I came home, but now I just leave it in the notebook in the handwritten version.<p>In addition I do have one excel spreadsheet that list all his meds and upcoming appointments with specialists and another that is a medical history of my son listing dates of x-rays, cat scans, tests, etc (since he has more going on that just CF this one is crucial to keep all the doctor's up to date) and I take both of these spreadsheets with me to every doctor's appointment.<p>After each doctor's appointment I file the appointment summaries (printout given by hospital/doctor's office) in a file folder in my desk filed by specialist. Before I go to that specialist again I pull the folder out and review the last visit.<p>I personally do not want to use one of the online services. I know that the Cleveland Clinic offers one and I have received info on other ones through the mail, but at this time I question the safety/security of those.
 

just1more

New member
As we have only had a son w/CF for 4 days we don't have a good system yet, using the pen/paper records that came with him from the foster mom.

My question is this though:

I have an IT background and do quite a bit of freelance software development on the side (I currently work outside IT). If I were intersted in trying to develop an program specifically for helping out those with CF & their families, is there anyone that might be intersted in working with me from the knowledge standpoint? I have the tech exprience, but it would take years to make sure I knew what we need to document/track and the best way to manage.

If anyone is interested, just email me at tom_overstreet@hotmail.com.

FYI, if I did anything along these lines it would be with the intention of offering free to anyone dealing with CF.
 

just1more

New member
As we have only had a son w/CF for 4 days we don't have a good system yet, using the pen/paper records that came with him from the foster mom.

My question is this though:

I have an IT background and do quite a bit of freelance software development on the side (I currently work outside IT). If I were intersted in trying to develop an program specifically for helping out those with CF & their families, is there anyone that might be intersted in working with me from the knowledge standpoint? I have the tech exprience, but it would take years to make sure I knew what we need to document/track and the best way to manage.

If anyone is interested, just email me at tom_overstreet@hotmail.com.

FYI, if I did anything along these lines it would be with the intention of offering free to anyone dealing with CF.
 

just1more

New member
As we have only had a son w/CF for 4 days we don't have a good system yet, using the pen/paper records that came with him from the foster mom.

My question is this though:

I have an IT background and do quite a bit of freelance software development on the side (I currently work outside IT). If I were intersted in trying to develop an program specifically for helping out those with CF & their families, is there anyone that might be intersted in working with me from the knowledge standpoint? I have the tech exprience, but it would take years to make sure I knew what we need to document/track and the best way to manage.

If anyone is interested, just email me at tom_overstreet@hotmail.com.

FYI, if I did anything along these lines it would be with the intention of offering free to anyone dealing with CF.
 

just1more

New member
As we have only had a son w/CF for 4 days we don't have a good system yet, using the pen/paper records that came with him from the foster mom.

My question is this though:

I have an IT background and do quite a bit of freelance software development on the side (I currently work outside IT). If I were intersted in trying to develop an program specifically for helping out those with CF & their families, is there anyone that might be intersted in working with me from the knowledge standpoint? I have the tech exprience, but it would take years to make sure I knew what we need to document/track and the best way to manage.

If anyone is interested, just email me at tom_overstreet@hotmail.com.

FYI, if I did anything along these lines it would be with the intention of offering free to anyone dealing with CF.
 

just1more

New member
As we have only had a son w/CF for 4 days we don't have a good system yet, using the pen/paper records that came with him from the foster mom.
<br />
<br />My question is this though:
<br />
<br />I have an IT background and do quite a bit of freelance software development on the side (I currently work outside IT). If I were intersted in trying to develop an program specifically for helping out those with CF & their families, is there anyone that might be intersted in working with me from the knowledge standpoint? I have the tech exprience, but it would take years to make sure I knew what we need to document/track and the best way to manage.
<br />
<br />If anyone is interested, just email me at tom_overstreet@hotmail.com.
<br />
<br />FYI, if I did anything along these lines it would be with the intention of offering free to anyone dealing with CF.
 

momtoCory

New member
I have a word document that I have on the computer will all of Cory's meds, insurance and doctor information. For emergencies, several years ago our Fire department started "Vial of life". I have a magnet on the refridge that states "vial of life". That prompts emergencies personel to look in the refridge for the vial. Inside the vial is a list of all current conditions, meds, doctors and emergency numbers(now if I would just keep it up to date).
 

momtoCory

New member
I have a word document that I have on the computer will all of Cory's meds, insurance and doctor information. For emergencies, several years ago our Fire department started "Vial of life". I have a magnet on the refridge that states "vial of life". That prompts emergencies personel to look in the refridge for the vial. Inside the vial is a list of all current conditions, meds, doctors and emergency numbers(now if I would just keep it up to date).
 

momtoCory

New member
I have a word document that I have on the computer will all of Cory's meds, insurance and doctor information. For emergencies, several years ago our Fire department started "Vial of life". I have a magnet on the refridge that states "vial of life". That prompts emergencies personel to look in the refridge for the vial. Inside the vial is a list of all current conditions, meds, doctors and emergency numbers(now if I would just keep it up to date).
 

momtoCory

New member
I have a word document that I have on the computer will all of Cory's meds, insurance and doctor information. For emergencies, several years ago our Fire department started "Vial of life". I have a magnet on the refridge that states "vial of life". That prompts emergencies personel to look in the refridge for the vial. Inside the vial is a list of all current conditions, meds, doctors and emergency numbers(now if I would just keep it up to date).
 

momtoCory

New member
I have a word document that I have on the computer will all of Cory's meds, insurance and doctor information. For emergencies, several years ago our Fire department started "Vial of life". I have a magnet on the refridge that states "vial of life". That prompts emergencies personel to look in the refridge for the vial. Inside the vial is a list of all current conditions, meds, doctors and emergency numbers(now if I would just keep it up to date).
 
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