Birthdays are still tough.

[makman]

Hello to all.  I have not been in the forum since 2005, when I originally joined.  I have kept CF.com in my email list, but have not responded.  I lost my Son in 2003 at the age of 21 yrs old.  His BDay is 31 May and the holiday weekend is always a grim reminder, but always smile at the sky and wish him Happy Birthday.  Anyway, I joined the forum in 2005 to ask if there were any facts for adult carriers and potential health related symtoms.  There was not alot of feedback at the time, but due to the weekend coming up, felt the need to readdress the same question.  I am now 46 years old and have always had trouble with breathing, sleeping, and seem to not get the full potential of my food intake.  Having kids with CF before they were diagnosed, you will understand what I mean...stool wise.  Now I am having problems with my pancreas, sludge in my gall bladder, and thyroid issues.  I gave up all alcohol and tobacco to eliminate a false prognosis from the military doctors.  I retired with 20 years and never felt fully healthy throughout my career. 
My question is...have any new studies or findings been discovered with CF related illnesses in CF carriers?  I have never been tested for the different mutations.  I had no idea until reading some Adults entries recently.  I was hospitalized for 4 days for pancreantitis.  A CT Scan was performed and found sludge in my gall bladder and recently, I have been back twice for (Lab) tests (blood drawn) and the results have come back with "Abnormal" readings.  I go back this Friday, May 27th for another (3rd) battery of blood draws. Due to my poor judgement and articles I read in the far past, I have never mentioned my Son's CF and being a confirmed carrier.  Are there ANY new findings?
makman: Son T.J. Dx June 1989- Nov. 2003, Daughter Samantha 16yrs/o, no cf

 

[makman]

Hello to all. I have not been in the forum since 2005, when I originally joined. I have kept CF.com in my email list, but have not responded. I lost my Son in 2003 at the age of 21 yrs old. His BDay is 31 May and the holiday weekend is always a grim reminder, but always smile at the sky and wish him Happy Birthday. Anyway, I joined the forum in 2005 to ask if there were any facts for adult carriers and potential health related symtoms. There was not alot of feedback at the time, but due to the weekend coming up, felt the need to readdress the same question. I am now 46 years old and have always had trouble with breathing, sleeping, and seem to not get the full potential of my food intake. Having kids with CF before they were diagnosed, you will understand what I mean...stool wise. Now I am having problems with my pancreas, sludge in my gall bladder, and thyroid issues. I gave up all alcohol and tobacco to eliminate a false prognosis from the military doctors. I retired with 20 years and never felt fully healthy throughout my career.
My question is...have any new studies or findings been discovered with CF related illnesses in CF carriers? I have never been tested for the different mutations. I had no idea until reading some Adults entries recently. I was hospitalized for 4 days for pancreantitis. A CT Scan was performed and found sludge in my gall bladder and recently, Ihave been back twice for (Lab) tests (blood drawn) and the results have come back with "Abnormal" readings. I go back this Friday, May 27th for another (3rd) battery of blood draws. Due to my poor judgement and articles I read in the far past, I have never mentioned my Son's CF and being a confirmed carrier. Are there ANY new findings?
makman: Son T.J. Dx June 1989- Nov. 2003, Daughter Samantha 16yrs/o, no cf

 

[makman]

<p>Hello to all. I have not been in the forum since 2005, when I originally joined. I have kept CF.com in my email list, but have not responded. I lost my Son in 2003 at the age of 21 yrs old. His BDay is 31 May and the holiday weekend is always a grim reminder, but always smile at the sky and wish him Happy Birthday. Anyway, I joined the forum in 2005 to ask if there were any facts for adult carriers and potential health related symtoms. There was not alot of feedback at the time, but due to the weekend coming up, felt the need to readdress the same question. I am now 46 years old and have always had trouble with breathing, sleeping, and seem to not get the full potential of my food intake. Having kids with CF before they were diagnosed, you will understand what I mean...stool wise. Now I am having problems with my pancreas, sludge in my gall bladder, and thyroid issues. I gave up all alcohol and tobacco to eliminate a false prognosis from the military doctors. I retired with 20 years and never felt fully healthy throughout my career.
<p>My question is...have any new studies or findings been discovered with CF related illnesses in CF carriers? I have never been tested for the different mutations. I had no idea until reading some Adults entries recently. I was hospitalized for 4 days for pancreantitis. A CT Scan was performed and found sludge in my gall bladder and recently, Ihave been back twice for (Lab) tests (blood drawn) and the results have come back with "Abnormal" readings. I go back this Friday, May 27th for another (3rd) battery of blood draws. Due to my poor judgement and articles I read in the far past, I have never mentioned my Son's CF and being a confirmed carrier. Are there ANY new findings?
<p>makman: Son T.J. Dx June 1989- Nov. 2003, Daughter Samantha 16yrs/o, no cf

 

[minimedic304]

It sounds like you have some symptoms of CF. It is very possibly you do have the disease at a milder level. You need to find a cf adult center, get a sweat test and genetic study again. Get away from the military doctors. They are horrible when it comes to treating CF. Keep in mind, if you had been diagnosed with CF you would never have been allowed in the military, so its a disease that is at the bottom of their study list.
New mutations are being found and depending when you last had it, say 5 years ago, there have been others discovered, especially in adults outside the United States. Brazil, and Japan have seen a massive increase in adult CF patients that were not diagnosed until they were 25-40 years old. I personally know 2 people.
Find a cf pulmonologist, they can check xray and see if there is scaring on the lung, another solid indication you have CF. This is no joke, you need to see a expert not a joe shmo physician.

 

[minimedic304]

It sounds like you have some symptoms of CF. It is very possibly you do have the disease at a milder level. You need to find a cf adult center, get a sweat test and genetic study again. Get away from the military doctors. They are horrible when it comes to treating CF. Keep in mind, if you had been diagnosed with CF you would never have been allowed in the military, so its a disease that is at the bottom of their study list.
New mutations are being found and depending when you last had it, say 5 years ago, there have been others discovered, especially in adults outside the United States. Brazil, and Japan have seen a massive increase in adult CF patients that were not diagnosed until they were 25-40 years old. I personally know 2 people.
Find a cf pulmonologist, they can check xray and see if there is scaring on the lung, another solid indication you have CF. This is no joke, you need to see a expert not a joe shmo physician.

 

[minimedic304]

<p>It sounds like you have some symptoms of CF. It is very possibly you do have the disease at a milder level. You need to find a cf adult center, get a sweat test and genetic study again. Get away from the military doctors. They are horrible when it comes to treating CF. Keep in mind, if you had been diagnosed with CF you would never have been allowed in the military, so its a disease that is at the bottom of their study list.
<p>New mutations are being found and depending when you last had it, say 5 years ago, there have been others discovered, especially in adults outside the United States. Brazil, and Japan have seen a massive increase in adult CF patients that were not diagnosed until they were 25-40 years old. I personally know 2 people.
<p>Find a cf pulmonologist, they can check xray and see if there is scaring on the lung, another solid indication you have CF. This is no joke, you need to see a expert not a joe shmo physician.

 

[kiwilady]

Hello Makman,  it's good to see you back on the forum.  I was sorry to read you lost your son.  I do a littlle upward smiling too,  birthdays can be particularly hard.
You sound like you are taking control of your health now, that's good.
Having a final diagnosis will I'm sure give you certain peace of mind-you will be able to start on a pathway to improving your health.
What Minimedic suggests is a sound idea;  a proven sweat test, chest xray and consulting a CF Specialist Physician would indeed give you some answers.
I'm sorry I can't answer your question re new findings or current studies for CF carriers, although,  recently I was reading Norma Kennedy Plourde's website to see she has written some articles relating to CF carriers.  Maybe you will find some helpful info there.
CF Carrier Symptoms,
nbnet.nb.ca
or www3.nb.ca/normap/cfcarriersymtoms.htm
Let us know how you get on.
Good luck!
Cheers
Eileen.<img title="Smile" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-smile.gif" alt="Smile" border="0" />
 

 

[kiwilady]

Hello Makman, it's good to see you back on the forum. I was sorry to read you lost your son. I do a littlle upward smiling too, birthdays can be particularly hard.
You sound like you are taking control of your health now, that's good.
Havinga final diagnosis will I'm sure give you certain peace of mind-you will be able to start on a pathway to improving your health.
What Minimedic suggests is a sound idea; a proven sweat test, chest xray and consulting a CF Specialist Physician would indeed give you some answers.
I'm sorry I can't answer your question re new findings or current studies for CF carriers, although,recently I was reading Norma Kennedy Plourde's website to see she has written some articles relating to CF carriers. Maybe you will find some helpful info there.
CF Carrier Symptoms,
nbnet.nb.ca
or www3.nb.ca/normap/cfcarriersymtoms.htm
Let us know how you get on.
Good luck!
Cheers
Eileen.<img title="Smile" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-smile.gif" alt="Smile" border="0" />

 

[kiwilady]

<p>Hello Makman, it's good to see you back on the forum. I was sorry to read you lost your son. I do a littlle upward smiling too, birthdays can be particularly hard.
<p>You sound like you are taking control of your health now, that's good.
<p>Havinga final diagnosis will I'm sure give you certain peace of mind-you will be able to start on a pathway to improving your health.
<p>What Minimedic suggests is a sound idea; a proven sweat test, chest xray and consulting a CF Specialist Physician would indeed give you some answers.
<p>I'm sorry I can't answer your question re new findings or current studies for CF carriers, although,recently I was reading Norma Kennedy Plourde's website to see she has written some articles relating to CF carriers. Maybe you will find some helpful info there.
<p>CF Carrier Symptoms,
<p>nbnet.nb.ca
<p>or www3.nb.ca/normap/cfcarriersymtoms.htm
<p>Let us know how you get on.
<p>Good luck!
<p>Cheers
<p>Eileen.<img title="Smile" src="include/wysiwyg/tinymce/jscripts/tiny_mce/plugins/emotions/img/smiley-smile.gif" alt="Smile" border="0" />
<p>

 

[makman]

Thanks for the input.  I am getting more serious about the whole situation by the minute.  I will be looking for more specific professional help.  I will let you know how things work out.
makman

 

[makman]

Thanks for the input. I am getting more serious about the whole situation by the minute. I will be looking for more specific professional help. I will let you know how things work out.
makman

 

[makman]

<p>Thanks for the input. I am getting more serious about the whole situation by the minute. I will be looking for more specific professional help. I will let you know how things work out.
<p>makman