Help, Husband might have CF

tinydancer0417 · May 24, 2008

hi there.

My husband is 25 and is having a lot of CF symptoms.
He coughs all the time and coughs up this really nasty sticky spit. He actually fills up about 4 waterbottles of this spit every day. He always has really bad sinus infections and bronchitis. He only weighs 125 and he's 5'9". He complains all the time of stomach pain and back pain, ear pain, and headaches. He's had an MRI and they said it was fine besides a nodule in his thyroid, which is normal. He also has real bad muscle spasms. It's hard for him to do anything with that persistent cough and constant spitting. He also craves Salt all the time. He does taste salty. I'm afraid that his internist will think we are crazy, but I do believe that he could really have this. He also had to take shots when he was little to make him grow. he looks like a teenager. I do too, but I'm not sick all the time either. could someone help me with this??? Where can I go to get him tested for this?

tinydancer0417 · May 24, 2008

hi there.

My husband is 25 and is having a lot of CF symptoms.
He coughs all the time and coughs up this really nasty sticky spit. He actually fills up about 4 waterbottles of this spit every day. He always has really bad sinus infections and bronchitis. He only weighs 125 and he's 5'9". He complains all the time of stomach pain and back pain, ear pain, and headaches. He's had an MRI and they said it was fine besides a nodule in his thyroid, which is normal. He also has real bad muscle spasms. It's hard for him to do anything with that persistent cough and constant spitting. He also craves Salt all the time. He does taste salty. I'm afraid that his internist will think we are crazy, but I do believe that he could really have this. He also had to take shots when he was little to make him grow. he looks like a teenager. I do too, but I'm not sick all the time either. could someone help me with this??? Where can I go to get him tested for this?

tinydancer0417 · May 24, 2008

hi there.

My husband is 25 and is having a lot of CF symptoms.
He coughs all the time and coughs up this really nasty sticky spit. He actually fills up about 4 waterbottles of this spit every day. He always has really bad sinus infections and bronchitis. He only weighs 125 and he's 5'9". He complains all the time of stomach pain and back pain, ear pain, and headaches. He's had an MRI and they said it was fine besides a nodule in his thyroid, which is normal. He also has real bad muscle spasms. It's hard for him to do anything with that persistent cough and constant spitting. He also craves Salt all the time. He does taste salty. I'm afraid that his internist will think we are crazy, but I do believe that he could really have this. He also had to take shots when he was little to make him grow. he looks like a teenager. I do too, but I'm not sick all the time either. could someone help me with this??? Where can I go to get him tested for this?

tinydancer0417 · May 24, 2008

hi there.

My husband is 25 and is having a lot of CF symptoms.
He coughs all the time and coughs up this really nasty sticky spit. He actually fills up about 4 waterbottles of this spit every day. He always has really bad sinus infections and bronchitis. He only weighs 125 and he's 5'9". He complains all the time of stomach pain and back pain, ear pain, and headaches. He's had an MRI and they said it was fine besides a nodule in his thyroid, which is normal. He also has real bad muscle spasms. It's hard for him to do anything with that persistent cough and constant spitting. He also craves Salt all the time. He does taste salty. I'm afraid that his internist will think we are crazy, but I do believe that he could really have this. He also had to take shots when he was little to make him grow. he looks like a teenager. I do too, but I'm not sick all the time either. could someone help me with this??? Where can I go to get him tested for this?

tinydancer0417 · May 24, 2008

hi there.
 
 My husband is 25 and is having a lot of CF symptoms.
 He coughs all the time and coughs up this really nasty sticky spit. He actually fills up about 4 waterbottles of this spit every day. He always has really bad sinus infections and bronchitis. He only weighs 125 and he's 5'9". He complains all the time of stomach pain and back pain, ear pain, and headaches. He's had an MRI and they said it was fine besides a nodule in his thyroid, which is normal. He also has real bad muscle spasms. It's hard for him to do anything with that persistent cough and constant spitting. He also craves Salt all the time. He does taste salty. I'm afraid that his internist will think we are crazy, but I do believe that he could really have this. He also had to take shots when he was little to make him grow. he looks like a teenager. I do too, but I'm not sick all the time either. could someone help me with this??? Where can I go to get him tested for this?

Alyssa · May 25, 2008

Yes, it does sound like he needs to be tested for CF. No, you are not crazy for thinking so, and if the internist doesn't take you seriously, go to another doctor to ask to be tested.

Go to <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org">http://www.cff.org</a> and look for a Certified CF center near you. It may take a while to get in for an appointment, but that would be the best place to start. Also depending on your health insurance coverage, he may also need to be referred there too, so you might have to involved his primary care doctor.

Most of the time doctors want to start with a sweat test but if he doesn't hit particularly high (clearly in the positive range) you will want to be sure to push for FULL genetic testing because not everyone tests out in the positive range. Getting someone to order full genetic testing can sometimes be a battle as most doctors and insurance companies don't want to pay for the full testing. Keep in mind that there are at least 1561 currently known CF genes. Most of the time a doctor will order a genetic test of 89 genes.... this will often times come back with one or no genes found....well duh! of course, if you only search for 89 out of 1561 you will likely miss them! Be sure to ask them how many genes they are testing for - a lot of people are lead to believe they are being tested for all, then find out later that it was really less than 100.

Best wishes, please keep us posted.

Alyssa · May 25, 2008

Yes, it does sound like he needs to be tested for CF. No, you are not crazy for thinking so, and if the internist doesn't take you seriously, go to another doctor to ask to be tested.

Go to <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org">http://www.cff.org</a> and look for a Certified CF center near you. It may take a while to get in for an appointment, but that would be the best place to start. Also depending on your health insurance coverage, he may also need to be referred there too, so you might have to involved his primary care doctor.

Most of the time doctors want to start with a sweat test but if he doesn't hit particularly high (clearly in the positive range) you will want to be sure to push for FULL genetic testing because not everyone tests out in the positive range. Getting someone to order full genetic testing can sometimes be a battle as most doctors and insurance companies don't want to pay for the full testing. Keep in mind that there are at least 1561 currently known CF genes. Most of the time a doctor will order a genetic test of 89 genes.... this will often times come back with one or no genes found....well duh! of course, if you only search for 89 out of 1561 you will likely miss them! Be sure to ask them how many genes they are testing for - a lot of people are lead to believe they are being tested for all, then find out later that it was really less than 100.

Best wishes, please keep us posted.

Alyssa · May 25, 2008

Yes, it does sound like he needs to be tested for CF. No, you are not crazy for thinking so, and if the internist doesn't take you seriously, go to another doctor to ask to be tested.

Go to <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org">http://www.cff.org</a> and look for a Certified CF center near you. It may take a while to get in for an appointment, but that would be the best place to start. Also depending on your health insurance coverage, he may also need to be referred there too, so you might have to involved his primary care doctor.

Most of the time doctors want to start with a sweat test but if he doesn't hit particularly high (clearly in the positive range) you will want to be sure to push for FULL genetic testing because not everyone tests out in the positive range. Getting someone to order full genetic testing can sometimes be a battle as most doctors and insurance companies don't want to pay for the full testing. Keep in mind that there are at least 1561 currently known CF genes. Most of the time a doctor will order a genetic test of 89 genes.... this will often times come back with one or no genes found....well duh! of course, if you only search for 89 out of 1561 you will likely miss them! Be sure to ask them how many genes they are testing for - a lot of people are lead to believe they are being tested for all, then find out later that it was really less than 100.

Best wishes, please keep us posted.

Alyssa · May 25, 2008

Yes, it does sound like he needs to be tested for CF. No, you are not crazy for thinking so, and if the internist doesn't take you seriously, go to another doctor to ask to be tested.

Go to <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org">http://www.cff.org</a> and look for a Certified CF center near you. It may take a while to get in for an appointment, but that would be the best place to start. Also depending on your health insurance coverage, he may also need to be referred there too, so you might have to involved his primary care doctor.

Most of the time doctors want to start with a sweat test but if he doesn't hit particularly high (clearly in the positive range) you will want to be sure to push for FULL genetic testing because not everyone tests out in the positive range. Getting someone to order full genetic testing can sometimes be a battle as most doctors and insurance companies don't want to pay for the full testing. Keep in mind that there are at least 1561 currently known CF genes. Most of the time a doctor will order a genetic test of 89 genes.... this will often times come back with one or no genes found....well duh! of course, if you only search for 89 out of 1561 you will likely miss them! Be sure to ask them how many genes they are testing for - a lot of people are lead to believe they are being tested for all, then find out later that it was really less than 100.

Best wishes, please keep us posted.

Alyssa · May 25, 2008

Yes, it does sound like he needs to be tested for CF. No, you are not crazy for thinking so, and if the internist doesn't take you seriously, go to another doctor to ask to be tested.
 
 Go to <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org">http://www.cff.org</a> and look for a Certified CF center near you. It may take a while to get in for an appointment, but that would be the best place to start. Also depending on your health insurance coverage, he may also need to be referred there too, so you might have to involved his primary care doctor.
 
 Most of the time doctors want to start with a sweat test but if he doesn't hit particularly high (clearly in the positive range) you will want to be sure to push for FULL genetic testing because not everyone tests out in the positive range. Getting someone to order full genetic testing can sometimes be a battle as most doctors and insurance companies don't want to pay for the full testing. Keep in mind that there are at least 1561 currently known CF genes. Most of the time a doctor will order a genetic test of 89 genes.... this will often times come back with one or no genes found....well duh! of course, if you only search for 89 out of 1561 you will likely miss them! Be sure to ask them how many genes they are testing for - a lot of people are lead to believe they are being tested for all, then find out later that it was really less than 100.
 
 Best wishes, please keep us posted.

tinydancer0417 · May 25, 2008