Adult not yet diagnosed.. could it be CF??

[anonymous]

First I will start with a into.. my name is Anna, I am married to my wonderful husband Kyle, I have to wonderful twin boys Matthew and Kristopher (wcf) and they are 5. At 9 months my boys were diagnosed with CF. We had no clue what CF was, or had ever heard of it ... much less knowing of it being in OUR families. We thought it was Asthma and they just had VERY WEIRD stools. Many years later... as we are understanding more, and have accpeted the fact that the boys will be okay... so long as we take good care of them.. and with the help of God. My husband... has always had stomach problmes... very very simular to CF stomach problems, if not excact. But he has never had a diagnoses for it. The doctors have said it might be Iratiable Bowel. But with much time of him being treated for that... it hasn't helped. Only 2 times that I have know of since we have been married (6years) has he had any kind of lung problems.... and it was just alot of tightness in the chest... which would cause him problems with breathing... both time our doc said it just sounded like pluracy (spelling??)...

So I guess what I am asking... is it possible that his tummy problems could be due CF, or not because he has no lung problmes?? What is your thoughts????

TIA!!! Anna

 

[anonymous]

Well...not to say that it is impossible...BUT....males with CF are close to 99% sterile. So if you have 2 sons....is not likely that your husband has CF. CF males do not develop the vas deferens...you can go to CFF.org and find out more info about CF. Hope your husband finds out why he is having problems....Good Luck!
Dea
31 w/CF, CFRD, and too many more to mention

 

[redeemedchild]

<FONT face="Comic Sans MS" color=#0000ff>Hate to be the bearer of bad news,but not all male cfers are sterile...My brother is 35 (today) and was diagnosed w/cf in the last 6 months and he has 2 boys<img src="i/expressions/brokenheart.gif" border="0">My brother has virtually no lung problems, other than in the past couple years he has had pneumonia.His cf symptoms are mainly digestive.one other thing he has had, that we wonder if is related...he has always had severe sinus problems, has had several sinus surgeries?There has never in either side of our family been anyone diagnosed w/cf, but there are several who died from pancreatic problems, I think they just were not diagnosed???Your husband should at the very least, get tested.God bless,pam</FONT>

 

[anonymous]

Not to sound incredibly insensitive to what's being discussed, but how did you get the blue font above? Cool. (I'm easily amused) lol

 

[anonymous]

I didn t say ALL CF males are sterile.....but there is a very high percentage. Do you know what mutations your sons have?
Dea

 

[anonymous]

I also meant to say that I'm glad your brother is doing so well Pam...its great that he has such minimal problems at age 35! Its so strange to me that so many more adults are being diagnosed...I couldnt imagine growing up and having problems and not knowing what was wrong. I was just a few weeks old when I was diagnosed...I'm thankful that I have always known.
Dea

 

[anonymous]

I know that having one copy of the mutation 3849 -10kb c->t sometimes enables men to have children. I have met several men with this mutation that have had families. There is info on this mutation and fertility on pubmed.

Tammy 43wcf

 

[ButtonNO1]

HI ANNA MY NAME IS JO I AM 20 AND HAVE CF. I WAS LUCKY AND DIAGNOSED AT 2 WEEKS OLD . I SUFFER MORE WITH CHEST PROBLEMS THAN I DO WITH BOWELS . YOUR HUSBAND CAN HAVE A SIMPLE SWEAT TEST TO FIND OUT IF HE HAS CF AS PEOPLE WITH CF HAVE MORE SALT THAN NORMAL ALL THE BEST FROM JO

 

[redeemedchild]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i>Not to sound incredibly insensitive to what's being discussed, but how did you get the blue font above? Cool. (I'm easily amused) lol<hr></blockquote><FONT face="Comic Sans MS" color=#0000ff>Not insensitive...I too am easily amused<img src="i/expressions/face-icon-small-wink.gif" border="0">When you are typing your post, at the top there should be a T with a color square...After typing your message, highlight it and click on that t up there and it will give you options for font, type, sixe and color.....enjoy<img src="i/expressions/face-icon-small-cool.gif" border="0">God bless,<img src="i/expressions/heart.gif" border="0">Pam</FONT>

 

[redeemedchild]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i>I also meant to say that I'm glad your brother is doing so well Pam...its great that he has such minimal problems at age 35! Its so strange to me that so many more adults are being diagnosed...I couldnt imagine growing up and having problems and not knowing what was wrong. I was just a few weeks old when I was diagnosed...I'm thankful that I have always known. Dea<hr></blockquote><FONT face="Comic Sans MS" color=#0000ff>To us, his family, it doesn't seem minimal. But I guess to someone who has all of the lung problems, it must.   Seems Kevin was just late diagnosed. He has had symptoms all of his life I think, that are only now making sense.He has always had digestive problems, and horrid sinus problems and some of the most awful migraines.The thing is, we don't really know anything about cf and don't really know where to start to try and understand it all. It just seems sooo complicated. He has been very sick with the pancreatitis for a long time. He has spent more time in the hospital than out in the past year. The docs just put in a j tube (?) because a pic line wouldn't work and they told him he would have it for a year????<img src="i/expressions/brokenheart.gif" border="0">anyway....God bless,<img src="i/expressions/heart.gif" border="0">pam</FONT>

 

[anna]

While at the boy's CF clinic appt today we had my hubby sweat tested. It came out borderline. So in the next week or so they want to do a genitic test. I will keep you updated!

Thank you all for jumping in and giving me your thoughts!!

As for a T for the text color and what have ya... I don't have one! <img src="i/expressions/face-icon-small-sad.gif" border="0"> Only a B I U, for bold, italic, and underline. Did I get jipped or what?? Any clue???

 

[anonymous]

I can sympathize with the sinus problems as well...I have had 4 sinus surgeries since May...and need another one. My headaches are just so painful. I'm curious...you said they put in a J tube....could it be a G-tube for nutrition? I know this a really new thing for your family...and soooo many things about CF. It is a very complicated disease because of the way it affects each person differently. Hang in there! Any questions you have....I'm sure someone here can help!
Dea

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>anna</b></i><br>While at the boy's CF clinic appt today we had my hubby sweat tested. It came out borderline. So in the next week or so they want to do a genitic test. I will keep you updated!



Anna,

The mutation I mentioned above, 3849 -10kb c->t, can also give a normal or borderline sweat test value. My sweat test value was borderline too! Please keep up posted.

Tammy 43wcf

 

[anonymous]

Hello All, can't believe what I've read.............................. my son was diagnoised last yr. at age 13........
I hate this term but lack a better on,,,,,,,,, he has a "light case" meaning that he has never had the stomach problems and was not diagnoised until 13............................. I am 46 and have had terrible
on going sinus problems, terrible headaches had two sinus surgeries and now and wondering if I possibly have CF..... have been unable
to get any answers on the cronic sinus infections. These conversations make me think......................
I am learning that CF can effect individuals soooooooooo differently.....................................

 

[anonymous]

Hi

I had a sweat test as a baby and it was borderline. The at 11 had another which was positive and I was diagnosed (after a childhood full of coughs and being very very underweight).

However, I do also think it's important to remember that regardless of the fact that CF is obviously now a possibility if it has been diagnosed elsewhere in the family, it could just be coincidences that some of you here appear to have issues such as sinus problems etc. Don't automatically think the worst, but probably always best to be tested and find out for sure.

 

[MarkR]

<img src="i/expressions/face-icon-small-blush.gif" border="0">
I to have a son, I'm 40 w/CF and I know quite a few more male CFers with children