Check this graph out. I’m so old I’m not even on there.
This one here says a little more relevant for my age group. Both graphs are from Cff.org 2019.
A reminder of some quick stats:
- Cystic fibrosis is an example of a recessive disease. That means a person must have a mutation in both copies of the CFTR gene to have CF. If someone has a mutation in only one copy of the CFTR gene and the other copy is normal, he or she does not have CF and is a CF carrier. About 10 million people in the United States are CF carriers.
- CF carriers can pass their copy of the CFTR gene mutation to their children. Each time two CF carriers have a child together, the chances are:
- 25 percent (1 in 4) the child will have CF
- 50 percent (1 in 2) the child will be a carrier but will not have CF
- 25 percent (1 in 4) the child will not be a carrier of the gene and will not have CF
- People with CF can also pass copies of their CFTR gene mutations to their children. If someone with CF has a child with a CF carrier, the chances are:
- 50 percent (1 in 2) the child will have CF
- 50 percent (1 in 2) the child will be a carrier but will not have CF
- Children of two carriers may be CF carriers like their parents. In a family with four children, it is possible that none of the children, some of the children, or all of the children will have CF. Each baby has the same chance to inherit CFTR mutations from both parents, no matter whether any of the other siblings are carriers or have CF. When someone with CF has children with a CF carrier, the children will either be CF carriers or have CF.
Still around 1,000 people are born with cystic fibrosis each year. There are more than 30,000 people living with cystic fibrosis in the US (more than 70,000 worldwide). (cff.org).
I check from time to time to see how the community is doing. I expect the stats to improve.
On Instagram, I see everyone working their damnedest. 💗 It’s a tough one. We are looking a heck a lot better than we ever did: color in our cheeks, hair with coated texture, tissue on our arms and legs, not so-barrel chested like we used to be.
There are many graphs of pre-transplant, post-transplant, where are we at transplant.
What you do today becomes your tomorrow.
These daily exercises;
the daily momentums;
the daily get your butt out of bed and put your sneakers on – that becomes your tomorrow.
And for me, I have to get back to the clinic. I have zero excuses. I have had the extreme privilege of a booster. Even though it’s been Covid – it’s been a wonderful reprieve from getting my PFTS. Mentally I have to suit up and get it done.
MN and Boston keep contacting me to make a follow-up appointment- I don’t need another virtual; I need hard stats. I have to see where I stand.
No matter what they say, I can move a bit faster. I jumped up in my ability of cardio. Yet – I still have shortness of breath time-to-time. I need to get it done, for myself –
I skipped a treatment for the first time in over ten years. Crazy right? Why would I do that? Cause I had the luxury of feeling good and knowing if I coughed, I would be alright.
I was exhausted and I allowed my body to sink into the couch. My mistake. I just wanted to see.
I heard the echo, “Did you do your treatment?” It was from far away, not in the present day. That grates on me. Same, “Don’t forget to take your pills.”
I coughed. My cough was clear, but I coughed a fair amount. When I fed the dogs at 5 am – I thought “I should just do a treatment.”
I went back to sleep for a couple hours, but I did an hour treatment. The experiment is complete for now. Treatments and pills forevermore. I would be foolish to think otherwise.
I got stuff to do. I have a life to live yet. I have things to write. I’m obsessed with this middle grade or YA book idea I’m stuck on. First – I have some other stories to write. Or maybe work on a bit here, a bit there.
Listen – we have one life. It goes by fast and it goes by with peace and love, anxiety and fear, sadness and sorrow, and a brilliance that you and I can live a life we are proud of –
That is from a little Claire Wineland. I miss her. Check out her youtube channel.
We are fragile, strong, tired maybe. Whatever. Get it done – a pep talk for you and me.
I know that CF folks in the US are over 40 right around 5%, maybe 6-7%. It will grow, but that is where we are at.
Your today will be your tomorrow.
Do your exercises –
Do your treatments damn it.
Much love to you and to you and to you. To the many strong people who are working their hardest –
postscript.
I watch “Memory Box Echoes of 9/11” It kind of change my life. Check it out. It is easy to find.
And I have a piece coming out soon. Fun stuff.