Today I had CF clinic. Thanks to Trikafta my weight is up, not that I want it to be. haha My lung functions are holding steady at 37%/1.06 L FEV1. In October they were 36%/1.02 L FEV1. It is unclear if I will gain any lung function on Trikafta, only time will tell. I’m just happy if I hold steady and put off lung transplant as long as possible which gives us more time to fundraise. The hope is that Trikafta will extend the time between exacerbations (lung infection) needing IV antibiotics.
The damage that is already done to my lungs will not change thus I may not gain much lung function. At 37% there is a lot of damage already done. Plus with my asthma, Trikafta won’t touch that. My doctor is pleased with how I’m doing. He did hear some wheezes which is most likely my asthma. I have been having some rattles and wheezes off and on. With all that said it was a good appointment. I will have my liver enzymes drawn in mid February to make sure my liver is behaving with Trikafta on board. It is filtered through the liver thus they have to check my liver enzymes every 3 months for the first year and then yearly after that. I have another regular CF check up in April. The only thing I have noticed since starting Trikafta is that I am more anxious. It hasn’t affected my depression at this point. I also have not had any of the bad side effects that some others have had which is good.
I’m turning 40 on February 1st!! My sister is throwing me a party/fundraiser on January 31st in Overland Park, KS. All the proceeds will go to my COTA lung transplant fund. If you want the info on the fundraiser please email me at LTLHOOK@yahoo.com. If you are not able to come to the fundraiser or just want to donate to my lung transplant fund, you can do so by going to www.COTAforShannonM.com. Every little bit helps!
Until next time…
2 thoughts on “CF Clinic Check up”
Shannon: if I could breathe life into your lungs, I would. I’m so happy to hear that initial results are good. I would suspect that when you live 39 yrs with a fatal disease that now may be at bay or may not, it’s normal to have anxiety. Just keep your hope alive. Love you, Margaret
Amazing! Happy Birthday! Wish I was closer to attend!