Parents of CF'ers, any cf-related symptoms?

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Dank

Guest
Are there any parents here that show symptoms of CF, or something related to the gene you carry specifically? My mother is having an awful time with her pancreas, which recently basically stopped working, and so she's not in such good shape. I am curious if there are others out there who have kids with CF, and they have gene-related symptoms. My father has had "COPD" for awhile now, and my mother has had pancreas problems. I'm not sure which gene each of them carries, but I can tell you my pancreas has been borderline for my entire life, and of course I have the lung problems too... Just wondering if there's some correlation here.
 
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welshwitch

Guest
I definitely think so! Both my parents (obviously carriers) have had morning coughs and have been coughing up phlegm as long as I've known them (TMI, but true!) I've always thought they both have a "touch" of CF.
 
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jshet

New member
My son has cf, and i think i have some "issues", lol. Without much detail, i am pretty sure i have some degree of malabsorption. Similar bathroom issues, and i guess I'm pretty small. 5'1, and 95 pounds. I pretty much eat whatever i want with no real weight gain. When i get a respirtory illness, it kicks my butt, and lasts so juch longer than anyone else in my house either ending in pneumonia or a sinus infection. Luckily, i am not sick often, but when i am, its rough.
 
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Ratatosk

Administrator
Staff member
We have a number of family members with sinus issues requiring numerous surgeries, but really no other issues (digestive, failure to thrive, etc.)
 
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Sarahken1

New member
I am a parent of an adult Cfer. I have always suffered with allergies and sinus problems. The last few years I have had more chesty problems. 2 years ago I got Bronchitis and every winter since I suffer with a cough that goes to my chest. I've always thought there was a link but other people have said this isn't possible.
 
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welshwitch

Guest
Also, my mom in particular has always had horrible allergies and has to get allergy shots constantly. If she's in a room with a cat, she can't breathe. I have always associated her with Kleenex….growing up she had it in her car, in her room, in her jacket pocket. Everywhere she went she was having an allergic reaction. I wonder what her PFT's are?
 
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Gammaw

Super Moderator
I think the official position of CFF is that carriers are symptomless. And I believe there are many carrier parents on this site who agree. I accepted that as true for a long time - until I started to notice so many coincidental issues that I've personally rejected the idea as simply a reflection of the current state of genetic/CF science. Our family is replete with asthma, COPD, sinus issues, reflux, heartburn, recurrent constipation.....you name it. It makes it easier for us to point to family members with similar problems when our little guy wants to know why he takes so much medicine! "This is to help you breathe like Grandma takes...." "Daddy takes reflux meds for that acid feeling too......" My personal bet is that one day they will tie a gene to virtually every physical ailment.....It just hasn't happened yet.....
 
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Aboveallislove

Super Moderator
Hey Gammaw,
A good friend (CF mom) shared this with me when I was talking about my amazingly low blood pressure! http://uvicf.org/researchnewsite/carrierhealth/. So the doctors are starting to get with the game! And re the original question: Beyond the low blood pressure, I've had GI issues forever. Had nasty lung issues in college and actually remember hanging upside down on the bed beating my chest trying to get gunk up, which to this day is so thick I can vomit trying to get up. I actually have no idea which of my folks was the carriers as my dad has horrible asthama, acid reflux, and GI issues; and my mom GI issues. I'd bet my dad if he weren't 1 of 7 and me one of 30 first cousins and no one on that side, but lucky ole' me having discovered I was a carrier the hard way.
 
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Helenlight

New member
Really interesting link Aboveallislove!

In our family, the carriers (myself and my Dad) both have allergies, sinus issues, and are prone to eczema and asthma (my Dad worse than me). We both have to be very careful with what we eat. Neither of us can tolerate dairy (causes a thick, mucus-like substance in the body). My partner is the same except for the asthma. We all do better on non-inflammatory diets with good quality fats. That's why I find the DHA info so interesting!
 
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SuzanneNez

New member
Hi Dank -- I was first diagnosed last summer by my pulmonologist, who had only dealt with one CF patient in the past. I tested positive for only one gene, but I already knew, through doing genealogy, that CF was in my father's family. A half-sister died of it when she was 11. My coughing issues were exacerbated by a bird my daughter brought home, and I became very sick, very quickly. I went to a CF Center where they ran a myriad of tests and determined that I do not have CF, that I have "Non-CF Bronchiectasis." However, the CF doctor is convinced that my one CF gene has mutated as a result of aging, and that's what brought on the bronch. I'm 74 now, and never had respiratory issues until 5 years ago, when I started full-blown coughing one day and couldn't stop, including multipe bouts of pneumonia every year since. I'm otherwise ridiculously healthy and active, but my doctor and I have no doubt that a mutation of the one CF gene has caused my problems.
 
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Gammaw

Super Moderator
Great links AboveAll and CFMom. It's nice to see the light dawning in the CF/medical world. It seems a simple step to recognize that many carriers often have symptoms and that they are related to their CF genetics. I keep trying to convince my "non-cf" mother in laws pulmonologist to put her on a vest and do a sputum sample! Even my relatives just roll their eyes at me. Meanwhile she coughs and remains short of breath . . . It just seems to me that many of the unique therapies developed for CF could benefit others with similar symptoms if the connections were recognized....
I am particularly surprised though by the indication that low blood pressure is even related to CF as related in one of the links. We have always joked around here that my husband didn't even have a blood pressure. So I suspect its not just female carriers who are so inclined. I wonder what the mechanics of this are . . . .
 
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Mama2Five

New member
Dank said:
Are there any parents here that show symptoms of CF, or something related to the gene you carry specifically? My mother is having an awful time with her pancreas, which recently basically stopped working, and so she's not in such good shape. I am curious if there are others out there who have kids with CF, and they have gene-related symptoms. My father has had "COPD" for awhile now, and my mother has had pancreas problems. I'm not sure which gene each of them carries, but I can tell you my pancreas has been borderline for my entire life, and of course I have the lung problems too... Just wondering if there's some correlation here.
Click to expand...

We don't know if our daughter has CF yet, but my Husband is a carrier (DeltaF508) and has Crohn's disease. He's been wondering lately if any of his GI problems could be related to his mutation, but we don't know.
 
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SuzanneNez

New member
I notice that you did not post my comment about finding out that I have a definitive diagnosis from a CF center of "Non-CF Bronchiectasis as a result of a mutated CF gene," rather than adult onset CF, as diagnosed at a non-CF center early this spring. I was replying to the question about close relatives having some of the CF symptoms. My half-sister died from CF at the age of 11, in the early 1950's. Would you prefer that I drop off this list? Thanks!
 
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Melissa75

Administrator
SuzanneNez said:
Hi Dank -- I was first diagnosed last summer by my pulmonologist, who had only dealt with one CF patient in the past. I tested positive for only one gene, but I already knew, through doing genealogy, that CF was in my father's family. A half-sister died of it when she was 11. My coughing issues were exacerbated by a bird my daughter brought home, and I became very sick, very quickly. I went to a CF Center where they ran a myriad of tests and determined that I do not have CF, that I have "Non-CF Bronchiectasis." However, the CF doctor is convinced that my one CF gene has mutated as a result of aging, and that's what brought on the bronch. I'm 74 now, and never had respiratory issues until 5 years ago, when I started full-blown coughing one day and couldn't stop, including multipe bouts of pneumonia every year since. I'm otherwise ridiculously healthy and active, but my doctor and I have no doubt that a mutation of the one CF gene has caused my problems.
Click to expand...

SuzanneNez,

I see your post about non-CF bronchiectasis. I have it quoted above. I'm not sure why you aren't seeing it.

Anyway I think your comment makes complete sense in this thread. Having bronchiectasis warrants a CF test, and that you're a carrier and you have bronchiectasis is important information. I don't know if anyone has studied whether carriers have bronchiectasis more often than non-carriers, but it's a study worth doing I'd think!

I'm with you in having non-CF bronchiectasis. But as far as I know I'm not a carrier. (I never had the full sequencing because of very low sweat test results as a baby and as an adult.)
 
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2005CFmom

Super Moderator
My husband has bronchiectasis and is a carrier of dF508. His doctors felt that his carrier status had some effect on his condition. He is basically on a CF breathing treatment plan...albuterol, hypersal, pulmozyme and vest!
 
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Dank

Guest
Thanks everyone for your replies. It's very interesting to hear some of the issues. Logically I would think it would be easy to pinpoint the gene types and what the issues that may arise. My mother is having awful problems at 56 years old with her pancreas which has basically stopped functioning altogether. I'm not sure what the doctors have been doing for the last five years, but she's not in good shape currently - and the stomach doctor basically told her it was a direct result of her CF gene. I have to wonder if this is a precursor to what I may face later in life. I hope not =( Hope you all have better experiences than she is having!
 
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