CF Carrier symptoms

By Lou1686

1 min read

I found out a few months ago (in my thirties) I am a CF carrier. Whilst I know that carrier symptoms cannot begin to compare to those who have CF, everything I have been experiencing for years just made sense.

Symptoms I've experienced as a carrier

Why I cannot ever seem to get a full lungful of air when exercising hard, despite being the fittest I’ve been in my life, waking up most mornings with an “asthma cough” which doesn’t really seem to go away with inhalers, sinus infections after sinus infections. My friends call me “wheezy” as I constantly have a wheeze. This finally made sense.

I was diagnosed as asthmatic 15 years ago, but I always felt it was something else. This makes sense. My partner and I are thinking about children but I want him to get tested for carrier status first. I'm not quite sure how I feel about finding out I'm a carrier. I know so many have it way worse so I can’t complain.

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SharonCPM Member
<inline-mention username="Lou1686" user-id="4204512"/> As an RN, over the decades I kept most of my weird symptoms (such as coughing up tiny hard balls of mucus plugs when I sneezed hard) from my doctors because I knew I would be seen as a nut cake. I just sucked up my pain. Thank God a few years ago two grossly visible symptoms appeared and yet my primary, who had helped me a great deal with my GI issues, started to do an - are you depressed, is there anything that makes you happy? I said to hubby OMG I need to get a new PCP! Maternal side has had many disparate cancers. My brother 15 years removed from renal cell cancer has been diagnosed with a Stage 2 cancer that is very treatable and concurrently was diagnosed with CLL and SLL. Our mother had metastasis of unknown primary site. I found out I was a CF carrier with genetic cancer screening, which thank goodness showed no known hereditary cancers. Then my brothers and I found out we are of Ashkenazi Jewish heritage of which CF is the second most frequent genetic disease/disorder seen in this group. It explains so much of my lifetime and those of family members multisystem issues and diagnoses - especially respiratory, GI, anemia, food intolerances, kidney function issues, and weird sudden infections and inflammatory diseases indicative of an autoimmune disorder. Genetics team sent me to a specialist to screen for pancreatitis and pancreatic cancer. She was the first provider to ever take the time to closely review my complete medical and that of my family, beginning a serious workup in terms of CF, underlying immunological disorder, and organs impacted by CF. You are probably aware of this research: Cystic fibrosis carriers are at increased risk for a wide range of cystic fibrosis-related conditions: <a href='https://www.pnas.org/content/117/3/1621' target='_blank' rel='noopener noreferrer ugc'>https://www.pnas.org/content/117/3/1621</a> I will return to the conversation once my workup is completed to provide details of my history and any findings to help other newly diagnosed CF carriers. 
1. SharonCPM Member
 <inline-mention username="Lynne" user-id="2082983"/> Thank you so much for asking. So I did have the sweat test about four weeks ago at MGH, and honestly I thought it would not be positive - despite the lifelong clear alignment with CF of lung and GI issues, pseudomonas skin and stool infections with tons of other inflammatory-related multi-system disorders - and said as much to the technician. Hours later received message from my doctor was that I tested in the moderate range on the sweat test. Elastase was within range and my gut has been great lately so for now I am holding on moving towards starting Creon (also concerned about inactive ingredients often derived from soy and porcine source as I buy my eggs and meats from soy-free feed protocol farms). My multiple food intolerances have been well under control, especially the hidden soy issues that led to the start of pancreatic symptoms. I had to stop drinking, and even the alcohol in vanilla extract has caused pain in pancreas! Workup is continuing in terms of seeing an Adult CF doctor, having PFTs - as I have grown older the lungs are returning in the direction of childhood when I constantly had bronchial infections and pneumonias (my mother used to tip me upside down and pull reams of mucus from me) - though I have gratefully been infection free lung wise saving some episodes as an adult. CT scans have been ordered by the pancreatic specialist. My labs are great but I have had a 30 year history of kidney function issues (my only bad routine lab!) and will be receiving fluid support before and after the contrast iodine to protect my kidneys. Full immunological workup was done some light chain elevation, but urine testing for the same was below identifiable amounts. Serum testing will be repeated in the future, but I think they are all thinking it is the generalized inflammation from the CF and not anything worse with the bone marrow causing this slight elevation, and there is some research literature out there that has noted this. I'm sure the CF specialist will be able to address this. That said my brother does have CLL/SLL so it does need to be watched. Recently, I started to take turmeric (curcumin) with black pepper enhancer (my doctors are aware) though like soy it is unfortunately a estrogen receptor and causes me uterine cramping and shooting pains in ovaries when I was taking it daily. I am able to take it every 3-4 days one tablet and its effects are lasting and every day I am taking a ginger supplement - in a effort to keep inflammation and pain (joints, back) so that the pain and spasms don't reach a point where I need ibuprofen with my kidney function issues. I will say that these, as does ibuprofen, really reduce the wheezing and lung mucus issues that have been worsening the past few years. <inline-mention username="Janeil Whitworth" user-id="2082195"/> 
2. Sarah Coff Community Admin
 <inline-mention username="SharonCPM" user-id="2084360"/> I'm happy to hear that you've been able to manage your food intolerances and have been feeling well in general. Have you had any updates since your last appointment? Sending you love and thinking of you! - Sarah, <a href='https://cystic-fibrosis.com' target='_blank'>Cystic-Fibrosis.com</a> Team Member
Janeil Whitworth Member
 Thanks for sharing, <inline-mention username="Lou1686" user-id="4204512"/>! I'm glad you at least have some answers for the mysterious symptoms you have had throughout your life. Can I ask how you found out you were a carrier? it definitely is stressful to find out if you partner is a carrier but it will help you make the most informed decisions. Wishing you well and keep us updated on how you are doing! Warmly, Janeil <a href='https://cystic-fibrosis.com' target='_blank'>cystic-fibrosis.com</a> Team Member