October 13, 2020 at 11:24 am #15722Bailey VincentKeymaster
I’ve been pondering family so far this week, and was wondering:
Has there ever been illness in your family that’s not CF?
How did it impact your family dynamic? How did you feel about it at the time?
My Dad had a really big battle with heart failure in 2017, and we nearly lost him. He was so sick after it hit, that he didn’t even know my name or recognize me when I walked into the hospital. Since his Dad had heart disease and I was in the ICU with Brugada some years before, we definitely know “heart stuff” and hearing loss is part of our familial tree too.
My Dad is deaf in one ear. My brother and eldest sister have some diminished hearing. And I, of course, am super profoundly deaf (progressively and later in life), as is my youngest daughter (mild-to-moderate/hard of hearing).
My Dad’s mother was a really brittle diabetic (Type 1), and of course cancer runs in our tree as it seems to run in all trees, but fortunately, my parents are in their mid 70s and pretty darn healthy now!
What about you?
October 13, 2020 at 1:38 pm #15724Jenny LivingstonKeymaster
Heart disease runs pretty rampantly in my dad’s family. My mom’s family has a history of diabetes and some cancers. In 2009, we were surprised to learn that my stepmom (with no previous family history) had an aggressive form of uterine cancer. That was the most shocking, earth-shattering diagnosis we’ve ever received outside of CF.
My dad doesn’t deal with sickness well. After losing my sister, he’s struggled with all things related to doctors, hospitals, and mortality. It was hard and to watch them battle together. Cancer is a beast! I’m happy to report that between surgery, chemo, and radiation, they were able to successfully rid her body of the cancer and she is still in remission!
October 13, 2020 at 10:37 pm #15728Becky FoxParticipant
Hi again, Bailey, hearing loss and profound deafness is a major debilitating condition that has and does plague my family (mother’s side). My half brother (deceased) was born totally deaf. My mom (also deceased) had hearing difficulties her entire life, and my hearing has gotten much worse, to the point that I have had 3 and a half pairs of hearing aids since my late thirties (I am now almost 75). Thankfully, none of the girls seem to have hearing difficulties. Diabetes was what took my mom, and runs rampant in my husband’s family. His sister recently died of type 1 Diabetes. His mom (deceased) had it and my husband currently has it. Though the risk for Diabetes is high, Kelly has not fallen victim to it. Cancer also is prevalent in both Bob’s and my family. Two aunts and one uncle on my side; also Bob, his mom and dad. His mom had leukemia, and his dad had rectal cancer. Bob has survived prostate cancer. Heart disease has afflicted several members of my mom’s family, including mom. Though I don’t know for sure what finally took my maternal grandma, she lived to be 86 bless her heart. ❤ Unfortunately, mental illness in the act of suicide claimed one uncle and one cousin on my mom’s side. Mom’s youngest sister attempted attempted suicide many times, but never succeeded; cancer was what took her life. That, friends, is our family’s health history. Some ordinary, some not so ordinary.
October 15, 2020 at 6:13 pm #15742Tim BlowfieldParticipant
What is CF related? What is not?
As we learn more about CF the issue is very cloudy. The recognition that CF is not just a disease that causes abnormal mucous that affects the lungs and other mucous membranes but that the failure of the Chloride pump due to the faulty CFTR protein leads to abnormal intracellular electrolytes. If Chloride ions are not pumped out then the levels within the cells will be high. It must be balanced with high Cations, esp Potassium (K) and Calcium (Ca) which may have widespread effects. These cations do affect the function of Muscle (incl Cardiac) and nerve cells. High intracellular Ca may be expected to affect the Parathyroid Gland, and Osteoperosis. What is the effect of high intracellular K on Adrenal function?
Thus there is ample reason to expect that heart failure, osteoperosis and adrenal dysfunction (hypokalaemia) may all be the result of the faulty CF gene. And what else?
CF people have been too often found to have abnormal reactions to many drugs such as Ca Channel Blockers, ACEI’s & ACEB’s, Spironolactone and others. High intracellular electrolytes may well be the reason.
What may we expect with CF’ers who have had lung transplants? All the other cells in their bodies still have the faulty CFTR genes and thus be expected to have abnormal intracellular electrolytes. If gene or other therapy becomes available by an inhaled process to correct the defect in the lungs what will be the effect of leaving other cells in the body with the faulty genes?
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