Feeling like a guinea pig

LouLou

New member
Do you have one of those cf books with the centers across the world listed in the back? I'm not sure if they have email addy's for the doctors but at least a name and snail mail address. Why not make form letter and blast it out to all of them simply asking for anyone with aspgilloma experience to contact you. Then you can get that doctor to consult yours or better yet make a visit to that doctor. If you don't hear from anyone you can follow up with each to confirm they don't have experience but in the meantime a doctor or a few might be in touch with you. Also, you could look up doctors online on cff.org. Seems like a time investment but I would say your health is worth it and don't bank on the doctor having time to undertake a project this size....unfortunately.
 

LouLou

New member
Do you have one of those cf books with the centers across the world listed in the back? I'm not sure if they have email addy's for the doctors but at least a name and snail mail address. Why not make form letter and blast it out to all of them simply asking for anyone with aspgilloma experience to contact you. Then you can get that doctor to consult yours or better yet make a visit to that doctor. If you don't hear from anyone you can follow up with each to confirm they don't have experience but in the meantime a doctor or a few might be in touch with you. Also, you could look up doctors online on cff.org. Seems like a time investment but I would say your health is worth it and don't bank on the doctor having time to undertake a project this size....unfortunately.
 

LouLou

New member
Do you have one of those cf books with the centers across the world listed in the back? I'm not sure if they have email addy's for the doctors but at least a name and snail mail address. Why not make form letter and blast it out to all of them simply asking for anyone with aspgilloma experience to contact you. Then you can get that doctor to consult yours or better yet make a visit to that doctor. If you don't hear from anyone you can follow up with each to confirm they don't have experience but in the meantime a doctor or a few might be in touch with you. Also, you could look up doctors online on cff.org. Seems like a time investment but I would say your health is worth it and don't bank on the doctor having time to undertake a project this size....unfortunately.
 

LouLou

New member
Do you have one of those cf books with the centers across the world listed in the back? I'm not sure if they have email addy's for the doctors but at least a name and snail mail address. Why not make form letter and blast it out to all of them simply asking for anyone with aspgilloma experience to contact you. Then you can get that doctor to consult yours or better yet make a visit to that doctor. If you don't hear from anyone you can follow up with each to confirm they don't have experience but in the meantime a doctor or a few might be in touch with you. Also, you could look up doctors online on cff.org. Seems like a time investment but I would say your health is worth it and don't bank on the doctor having time to undertake a project this size....unfortunately.
 

LouLou

New member
Do you have one of those cf books with the centers across the world listed in the back? I'm not sure if they have email addy's for the doctors but at least a name and snail mail address. Why not make form letter and blast it out to all of them simply asking for anyone with aspgilloma experience to contact you. Then you can get that doctor to consult yours or better yet make a visit to that doctor. If you don't hear from anyone you can follow up with each to confirm they don't have experience but in the meantime a doctor or a few might be in touch with you. Also, you could look up doctors online on cff.org. Seems like a time investment but I would say your health is worth it and don't bank on the doctor having time to undertake a project this size....unfortunately.
 

LouLou

New member
Do you have one of those cf books with the centers across the world listed in the back? I'm not sure if they have email addy's for the doctors but at least a name and snail mail address. Why not make form letter and blast it out to all of them simply asking for anyone with aspgilloma experience to contact you. Then you can get that doctor to consult yours or better yet make a visit to that doctor. If you don't hear from anyone you can follow up with each to confirm they don't have experience but in the meantime a doctor or a few might be in touch with you. Also, you could look up doctors online on cff.org. Seems like a time investment but I would say your health is worth it and don't bank on the doctor having time to undertake a project this size....unfortunately.
 

cf4life

New member
As a patient you have the right to ask for a second opinion. I don't know where you are from, but I would look into travelling to a bigger hospital where they might have doctors that have more experience or can refer you to someone who does.
 

cf4life

New member
As a patient you have the right to ask for a second opinion. I don't know where you are from, but I would look into travelling to a bigger hospital where they might have doctors that have more experience or can refer you to someone who does.
 

cf4life

New member
As a patient you have the right to ask for a second opinion. I don't know where you are from, but I would look into travelling to a bigger hospital where they might have doctors that have more experience or can refer you to someone who does.
 

cf4life

New member
As a patient you have the right to ask for a second opinion. I don't know where you are from, but I would look into travelling to a bigger hospital where they might have doctors that have more experience or can refer you to someone who does.
 

cf4life

New member
As a patient you have the right to ask for a second opinion. I don't know where you are from, but I would look into travelling to a bigger hospital where they might have doctors that have more experience or can refer you to someone who does.
 

cf4life

New member
As a patient you have the right to ask for a second opinion. I don't know where you are from, but I would look into travelling to a bigger hospital where they might have doctors that have more experience or can refer you to someone who does.
 
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