Late Diagnosis

P

Printer

Active member
I'm male 70 years of age and was diagnosed at age 47. I was about 15 before CF had a name and then "only infants had CF"
<br />
<br />After many years of lung problems, stomach surgery and being hospitalized, with pancreatitis, on and off for a period of about 10 years, a Dentist, slightly older than 47 was diagnosed at Massachusetts General Hospital for CF. Fortunatly I was able to be pushed onto his coatails.
<br />
<br />Being diagnosed saved my life. I have been much healthier since and I go to the Adult CF Clinic at MGH.
 
S

sasha

Guest
Hi..I can totally relate to you! I was diagnosed when I was 15, about a year and a half ago. I was going to my regular family doctor, and like so many people are told, she kept pushing asthma. I went back about 6 times over a period of 4 months or so, and was getting increasingly worse, but she still kept saying asthma. And who was I not to believe her? She was a doctor, and although I felt seriously ill, I trusted her. I didn't even know what cf was, even though I kept looking up all my problems on the internet,trying to find answers. So anyway I kept getting sicker and sicker, losing weight, vomiting daily, and not even being able to walk because I couldn't breathe, my nails and lips would even turn blue at times. I guess I knew something was extremely wrong, but it just didn't register or something, that I needed immediate help. So one day it became too intolerable, and I went to the emergency room. Long story short, they transferred me to the children's hospital in a nearby city, and I spent 3 weeks there, learning about CF and how my new life would go . I tell you.. BEST decision ever. After leaving the hospital, my pft's went from 37% to 86%, and now 95%. Needless to say, I haven't been back to my old family doctor!
 
S

sasha

Guest
Hi..I can totally relate to you! I was diagnosed when I was 15, about a year and a half ago. I was going to my regular family doctor, and like so many people are told, she kept pushing asthma. I went back about 6 times over a period of 4 months or so, and was getting increasingly worse, but she still kept saying asthma. And who was I not to believe her? She was a doctor, and although I felt seriously ill, I trusted her. I didn't even know what cf was, even though I kept looking up all my problems on the internet,trying to find answers. So anyway I kept getting sicker and sicker, losing weight, vomiting daily, and not even being able to walk because I couldn't breathe, my nails and lips would even turn blue at times. I guess I knew something was extremely wrong, but it just didn't register or something, that I needed immediate help. So one day it became too intolerable, and I went to the emergency room. Long story short, they transferred me to the children's hospital in a nearby city, and I spent 3 weeks there, learning about CF and how my new life would go . I tell you.. BEST decision ever. After leaving the hospital, my pft's went from 37% to 86%, and now 95%. Needless to say, I haven't been back to my old family doctor!
 
S

sasha

Guest
Hi..I can totally relate to you! I was diagnosed when I was 15, about a year and a half ago. I was going to my regular family doctor, and like so many people are told, she kept pushing asthma. I went back about 6 times over a period of 4 months or so, and was getting increasingly worse, but she still kept saying asthma. And who was I not to believe her? She was a doctor, and although I felt seriously ill, I trusted her. I didn't even know what cf was, even though I kept looking up all my problems on the internet,trying to find answers. So anyway I kept getting sicker and sicker, losing weight, vomiting daily, and not even being able to walk because I couldn't breathe, my nails and lips would even turn blue at times. I guess I knew something was extremely wrong, but it just didn't register or something, that I needed immediate help. So one day it became too intolerable, and I went to the emergency room. Long story short, they transferred me to the children's hospital in a nearby city, and I spent 3 weeks there, learning about CF and how my new life would go . I tell you.. BEST decision ever. After leaving the hospital, my pft's went from 37% to 86%, and now 95%. Needless to say, I haven't been back to my old family doctor!
 
A

Aspiemom

Guest
Ree, I was 43 years old when I was dx. All of my drs. blamed it on allergies, etc. I started coughing up blood and they still didn't take me seriously.

When I got married in 1987 I saw my husband's dr. and he said my productive constant cough was not normal and he sent me to a Pulm. where they dx me with Bronchiectasis. When they went into my lungs in 2003 at Johns Hopkins they found Pseudomonis and sent my blood to a Ambry.

I know what you mean. That's a lot of years of being misdiagnosed and not getting proper treatment.
 
A

Aspiemom

Guest
Ree, I was 43 years old when I was dx. All of my drs. blamed it on allergies, etc. I started coughing up blood and they still didn't take me seriously.

When I got married in 1987 I saw my husband's dr. and he said my productive constant cough was not normal and he sent me to a Pulm. where they dx me with Bronchiectasis. When they went into my lungs in 2003 at Johns Hopkins they found Pseudomonis and sent my blood to a Ambry.

I know what you mean. That's a lot of years of being misdiagnosed and not getting proper treatment.
 
A

Aspiemom

Guest
Ree, I was 43 years old when I was dx. All of my drs. blamed it on allergies, etc. I started coughing up blood and they still didn't take me seriously.
<br />
<br />When I got married in 1987 I saw my husband's dr. and he said my productive constant cough was not normal and he sent me to a Pulm. where they dx me with Bronchiectasis. When they went into my lungs in 2003 at Johns Hopkins they found Pseudomonis and sent my blood to a Ambry.
<br />
<br />I know what you mean. That's a lot of years of being misdiagnosed and not getting proper treatment.
 
J

jhdf

New member
RE;Late Diagnosis

i think for proper treatment of maximm dieses i prefered online pharmacy as it was a wonderful exprince,so guys yo shold contact their.




<a target=_blank class=ftalternatingbarlinklarge href="https://">online pharmacy</a>
 
J

jhdf

New member
RE;Late Diagnosis

i think for proper treatment of maximm dieses i prefered online pharmacy as it was a wonderful exprince,so guys yo shold contact their.




<a target=_blank class=ftalternatingbarlinklarge href="https://">online pharmacy</a>
 
J

jhdf

New member
RE;Late Diagnosis

i think for proper treatment of maximm dieses i prefered online pharmacy as it was a wonderful exprince,so guys yo shold contact their.
<br />
<br />
<br />
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="https://">online pharmacy</a>
 
A

auntcob

New member
My son was dx in Feb. at age 14. His dx came about because of severe gasto problems. His lungs are relatively healthy--PFTs in low 80s. Does have a history of asthma and sinus infections. Any of you late diagnoses folks presented with primarily gastro issues? He has gained 8 much needed lbs since starting zenpep. His pulmo is not doing vest or even CPT unless he has a cold/infection.

Stay well!
 
A

auntcob

New member
My son was dx in Feb. at age 14. His dx came about because of severe gasto problems. His lungs are relatively healthy--PFTs in low 80s. Does have a history of asthma and sinus infections. Any of you late diagnoses folks presented with primarily gastro issues? He has gained 8 much needed lbs since starting zenpep. His pulmo is not doing vest or even CPT unless he has a cold/infection.

Stay well!
 
A

auntcob

New member
My son was dx in Feb. at age 14. His dx came about because of severe gasto problems. His lungs are relatively healthy--PFTs in low 80s. Does have a history of asthma and sinus infections. Any of you late diagnoses folks presented with primarily gastro issues? He has gained 8 much needed lbs since starting zenpep. His pulmo is not doing vest or even CPT unless he has a cold/infection.
<br />
<br />Stay well!
 
H

hmw

New member
auntcob~ I would urge you, AGAIN~ to rethink the instructions you've been given re. vest and cpt. A hx of asthma and his pft's in the low 80's indicates that your son does indeed have pulmonary involvement with his cf. What are his doctors waiting for before recommending daily airway clearance? Preventative care is the backbone of treating cf. Preventing damage is DIRECTLY ASSOCIATED with increasing the lifespan of those with cf. Once damage occurs, it cannot be undone.

eta> you don't need the dr's permission to be more proactive with your child's care (i.e. do airway clearance or vest daily vs. only when sick.) This is the standard of care for the disease, not the exception to the rule... no cf doctor worth their salt could ever criticize you for doing this.
 
H

hmw

New member
auntcob~ I would urge you, AGAIN~ to rethink the instructions you've been given re. vest and cpt. A hx of asthma and his pft's in the low 80's indicates that your son does indeed have pulmonary involvement with his cf. What are his doctors waiting for before recommending daily airway clearance? Preventative care is the backbone of treating cf. Preventing damage is DIRECTLY ASSOCIATED with increasing the lifespan of those with cf. Once damage occurs, it cannot be undone.

eta> you don't need the dr's permission to be more proactive with your child's care (i.e. do airway clearance or vest daily vs. only when sick.) This is the standard of care for the disease, not the exception to the rule... no cf doctor worth their salt could ever criticize you for doing this.
 
H

hmw

New member
auntcob~ I would urge you, AGAIN~ to rethink the instructions you've been given re. vest and cpt. A hx of asthma and his pft's in the low 80's indicates that your son does indeed have pulmonary involvement with his cf. What are his doctors waiting for before recommending daily airway clearance? Preventative care is the backbone of treating cf. Preventing damage is DIRECTLY ASSOCIATED with increasing the lifespan of those with cf. Once damage occurs, it cannot be undone.
<br />
<br />eta> you don't need the dr's permission to be more proactive with your child's care (i.e. do airway clearance or vest daily vs. only when sick.) This is the standard of care for the disease, not the exception to the rule... no cf doctor worth their salt could ever criticize you for doing this.
 
H

HineMaoriNZ

New member
Kia Ora everyone, I was dx with CF when I was 33 (40 now) after my older sister was dx a year before. I was 25 when dx with asthma and bronchiectisis so I guess dr's thought re-occuring chest infections with haemoptysis were due to that. I can't help but wonder if not for my sister's dx would I know today? 7 years after dx I'm still learning and coming to grips with it. In more recent years I've been dx with emphysema, MAIC and B.cepacia....the learning seems to be ongoing!! Yes, I agree, if I was dx earlier I certainly would have taken better care of myself and gone to the dr more often instead of 'riding out the flu' as I did when I was in my teens n twenties...I certainly wouldn't have the amount of irreversable scaring in my lungs from untreated infections....(sigh)
 
H

HineMaoriNZ

New member
Kia Ora everyone, I was dx with CF when I was 33 (40 now) after my older sister was dx a year before. I was 25 when dx with asthma and bronchiectisis so I guess dr's thought re-occuring chest infections with haemoptysis were due to that. I can't help but wonder if not for my sister's dx would I know today? 7 years after dx I'm still learning and coming to grips with it. In more recent years I've been dx with emphysema, MAIC and B.cepacia....the learning seems to be ongoing!! Yes, I agree, if I was dx earlier I certainly would have taken better care of myself and gone to the dr more often instead of 'riding out the flu' as I did when I was in my teens n twenties...I certainly wouldn't have the amount of irreversable scaring in my lungs from untreated infections....(sigh)
 
H

HineMaoriNZ

New member
Kia Ora everyone, I was dx with CF when I was 33 (40 now) after my older sister was dx a year before. I was 25 when dx with asthma and bronchiectisis so I guess dr's thought re-occuring chest infections with haemoptysis were due to that. I can't help but wonder if not for my sister's dx would I know today? 7 years after dx I'm still learning and coming to grips with it. In more recent years I've been dx with emphysema, MAIC and B.cepacia....the learning seems to be ongoing!! Yes, I agree, if I was dx earlier I certainly would have taken better care of myself and gone to the dr more often instead of 'riding out the flu' as I did when I was in my teens n twenties...I certainly wouldn't have the amount of irreversable scaring in my lungs from untreated infections....(sigh)
 
M

marcijo

Guest
I was diagnosed at age 20 (or 21-I can't remember!) and I am 36 now. I had walking pneumonia and my doctor (an HMO doctor even!) wanted to figure out why I got it. They tested me for TB and CF...sweat test came back borderline so they gave me a genetic test.

I never really had too many symptoms before I got the walking pneumonia.....I had my tonsils out at age 12 and also ahd some nasal polyps removed-apparently these are a sign of CF.
 
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