I don't even know how long its been since I updated. Been a bit busy the past few months in a good way. But at the exact same time my life is still kinda boring as the pandemic is still going on. I have gotten into arguments with people close to me about mask!! Just wear them. Please. Fun fact in CF centers prior to this mask are required at all points for us while we are in the hospital. And we need to stay 6 ft a part as not to transfer bacteria to each other. I also had lots of testing done at my CF center.
My lung CT scan showed a few issues. Which was to be expected. I have been having some chronic pain with them which they took very seriously. There wasn't a hesitation. I also had to do a reflux test and my chest x ray and most of the reflux study focused on how bad my lungs look. Which is also why I was not shocked to hear my lungs are a bit damaged. But I was shocked to know that my heart is a mess. I have not gotten any phone calls as of yet but there are a few issues with my right ventricle. Which is common in lung disease because it puts added stress to the heart. I know my local heart doc has warned me about this for years and it was just a matter of when it happened. But it would be tricky to treat it because I have low blood pressure and theres a debate whether or not I have asthma. One doctor says yes, one says no. Some its up in the air.
My one gene came back from testing that I am one 8 with the gene. I can't remember off the top of my head what the exact number is but its rare. Go figure. They want to some gene splicing and such. I got sent 2 genes that were similar but they state I have one (i dont even try to understand this) so they want to gene splice and find another gene they assume I have but can not find because my disease is so active. They also want to do genetic testing for primary celia dyskensias which is similar to CF but very different. Chronic mucus, damaged lungs, multiple infections, and so on.
This entire thing started as a POTS blog, which I do have. I run my fluid daily. I deal with my POTS daily. But as for constant testing and constant work we sorta have what works for me and body down. IVs, gluten free, no meat, and easily digestible foods. I also balance this with low cardio exercises. I see all the time "do not tell me its my diet and I need to exercise" but oh darling how it has changed my life. I eat much differently then everyone else and I am ok with it.
I guess thats all for now. Wanted to update this quickly while I had a moment.
Love Yall
~Poppet
