- This topic has 8 replies, 5 voices, and was last updated 2 years, 7 months ago by Jenny Livingston.
October 6, 2020 at 1:26 pm #15683
Since posting about my surgery last week, a lot of people have asked: “Is that connected to CF?” and I’m left trying to explain how “everything is sort of connected to CF”. Even though my CF is defined as atypical in terms of genes, I find that everything eventually intersects.
In my opinion, the degeneration in my spine is likely due to malnutrition from years of undiagnosed CF (oh how Creon has helped my soul, lol), CF related bone issues, and maybe even impact from years of coughing, straining, and dancing. Of course, that’s just me connecting dots more than anything else.
What health problems or symptoms have you had that don’t seem ‘connected to Cf’?
October 6, 2020 at 1:47 pm #15687Jenny LivingstonParticipant
The first thing that comes to mind for me is the complications I had during my pregnancy. I had many unexplained issues (like near constant bleeding for the duration of my pregnancy) that at the time we said were “likely not related to CF.” But I look back and think, it was totally CF! I’d always bleed after a coughing fit. Always. I was told that I must have an irritable uterus (which, is maybe a thing?) or that my chronic dehydration (which is common for people with CF) was causing problems.
I also get migraines, which I’ve been told is genetic (and it’s true that both my parents, my brother, and my daughter all have) but I experience them far more frequently when I’m having an exacerbation.
To me it seems that if things aren’t caused by CF, they are certainly connected to or worsened by it.
October 6, 2020 at 9:28 pm #15692
I certainly believe that most of the co-morbidities that CF’ers suffer are well connected to CF. I have posted many times that the faulty CFTR protein which stops Chloride being pumped from the cells causes high levels of the Cations Potassium and Calcium in the intracellular fluid. High Calcium in the parathyroid Gland cells is sure to affect Parathyroid Hormone (PTH) levels and thus bone mineralisation. I am not surprised to see skeletal issues & Osteoporosis.
High intracellular Potassium and Calcium will affect muscle function including cardiac muscle as well as Adrenal Gland function (Hypokalaemia (low serum (extracellular) potassium) is most probably the result of higher than normal intracellular levels. Are the Adrenal Cells responding and trying to reduce the intracellular levels. Potassium is important in nerve cells and their function.
CF is a chameleon of a disease of which we have lots to learn. The concentration on the lungs, while important, has let a lot of issues neglected, not investigated and not understood.
October 7, 2020 at 8:33 am #15695Janice HankinsParticipant
I hope so
October 7, 2020 at 8:48 am #15696Janice HankinsParticipant
Please forgive me for the latest remark. I am new to this group. I am also computer inexperienced.
October 7, 2020 at 9:20 am #15697Paul met DebbieParticipant
Ha, the most beautiful question ever asked! Thanks, Bailey.
I am quite sure Everything is Connected 🙂
Even better, All is One!
And let’s not forget indirect connections, like side effects of medication we take because of the direct effects of cf. And the medication we take against those side effects etc.etc.
So indeed, Jenny, doctors should be more aware of the broader connection and yes, Tim, the ion channel defect should be examined much more holistically! Come on doctors and scientists, don’t be so narrow minded.
It would be nice though to also consider positive effects of cf. I mention a few personal plusses to start:
1. I can eat what I want without getting overweight;
2. It made me totally aware of the present more than anything else did;
3. It made me take really good care of my body;
4. I never persued a stressfull occupation;
5. I taste delightfully salty;
6. I learned to enjoy spending time in home, and
7. It’s one of the myriad circumstances that brought me here and now.
Please feel free to add to the list of cf-plusses!
October 7, 2020 at 6:12 pm #15701
Fear not – computer (confuser) inexperienced or not – your comments are important. You will learn.
October 7, 2020 at 6:15 pm #15702
Hi Paul met Debbie. I like your positives.
October 8, 2020 at 11:07 am #15704Jenny LivingstonParticipant
I love this! I’ve got some positives as well.
The people. My closest friends are people I’ve met directly because CF helped me get to the right time and right place to meet them and forge strong connections.
Empathy. Not only has CF helped me fine-tune my empathetic ability, my daughter has learned the importance of empathy and understanding for others.
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