I still have CF issues even though I’ve had a double-lung transplant
My digestion, sinuses, and mental health remain affected post-surgery
Cystic fibrosis (CF) often feels like a foreign friend since I got new lungs five years ago.
Before that, CF was my constant companion; I always felt its presence. With aggressive lung disease, I was continually congested, did rigorous breathing treatments, and cleared my mucus-filled lungs 24/7. Other systems in my body were mildly affected by thick, sticky mucus.
But now, on the other side of my transplant, I have to remember to keep track of those issues simmering in the background.
One factor that hasn’t changed is my risk of illness, which has always been high. Before my transplant, I was frequently sick from germs that got stuck in my mucus-filled lungs. This mucus instantly caused raging respiratory infections, which were beaten by antibiotics and intense respiratory treatments.
Post-transplant, I take immunosuppressant drugs so I don’t reject my lungs. But these life-saving medications suppress my immune system, which makes me more susceptible to colds and viruses. Life before and after my transplant has required extra caution and preventive measures so I can stay as healthy as possible.
The good news is that my new lungs will never have CF. Since my transplanted lungs came from someone else’s body, they’ll always have my donor’s DNA. My CF genetics will never infiltrate my new lungs. Thankfully, I won’t deal with thick, sticky mucus plugging those airways ever again.
But other systems in my body continue to be affected by CF.
My digestive system, for instance, still needs attention. I take enzymes to digest food, as I’ve always had underlying pancreatic insufficiency. I’ve changed my diet so I can digest more easily and not tax my system unnecessarily. Eating a diet of whole foods prevents blockages for me and makes me feel better overall. Additionally, with steroid-induced diabetes, I limit my sugar and carbohydrate intake to keep my blood sugar as steady as possible.
My CF sinus disease has also continued. I’ve had a few surgeries, both pre- and post-transplant, to clear my sinuses of thick, sticky mucus. I do routine sinus rinses, but my system still lacks enough salt, which leads to the clogging of my passages. Try as I may, the mucus is relentless.
And unlike most transplant recipients, I still use my nebulizer from time to time. Sometimes after I exercise outdoors, my chest feels tight and I’m a bit wheezy. Nebulizing helps to open my airways when they’re inflamed by changing weather patterns (especially since I live in the Northeast). I must confess, I take a strange comfort in nebulizing today since that was my daily routine until I got new lungs.
I’ve also noticed that anxiety and depression seem to go hand in hand with chronic illness, at least for me. Through my education, counseling work, and personal therapy sessions, I’ve learned skills to manage the mental health aspects of CF and a lung transplant. Speaking of that, I’ve been in a continuous healing process from the trauma caused by my near-death experiences and chronic health conditions.
These conditions, along with medications and surgeries, will always be part of my life. Accepting this truth has given me the grace to live alongside my CF and double-lung transplant. It’s often not easy, but every day that I’m granted is worth it.
Although I have new lungs, I feel strange if I say I still deal with CF. Celebrating Cystic Fibrosis Awareness Month feels very different for me now, compared with how it felt before my transplant. Then, CF felt like it was my entire life. Now, it’s a tiny piece of my life puzzle.
For those who are post-transplant, can you relate? Please leave a comment below.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
This just shows that CF is more than just a lung problem. lea, You comment that you still have mental issues which shows that it is not just a problem of thick mucous. PwCf often have Adrenal issues such as hypokalaemia and my wife has a plethora of other 'co-morbidities' unexplainable if we see CF as just a problem caused by thick mucous.
Rather it all suggests that the blocked Chloride channel causes abnormal intracellular electrolytes that affect the function of every cell and organ in the body: The Cations Potassium(K) , Calcium(Ca) with Sodium and Magnesium are all probably raided to balance the high anion Chloride. High K in the Adrenal medulla cells may be expected to lead to those cell trying to lower K , hence Hypokalaemia. Similarly high Ca in Parathyroid cells may lead to hyperparathyroidism and Osteoperosis, High K & Ca in heart muscle to heart muscle dysfunction (Cardiomyopathy and Rythm problems) and in the Brain - electrolytes are involved in neural transmission. More needs to be researched on this aspect of CF. This is a good reason that the modulators, eg Trikafta, be continued in persons with lung transplants.