Day 64 - Trikafta explained

My cf journey through lockdown staycation vacation and starting Trikafta #cysticfibrosis #trikaftastarted #wonderdrug

[@peterleid5060]

Congratulations!! What an encouraging story that Trikafta brings Sammie. A little too late arriving for me, but I guess 13 years ago when I received a bi-lateral lung transplant I received the best available option. Diet wise I found that it's best to cut out almost all carbohydrate and up the fat and protein so my ratio is +/- 75-80% fats, 15-20% protein and up to a maximum of 5% carbohydrate. I never count calories because they are misleading... only calories from carbohydrates can be stored as "extra weight"... fat in the diet cannot be stored as fat and only a small amount of protein will be metabolised to make glucose and perhaps make it to fat storage (unlikely). The anti-rejection medication I must take makes me a diabetic, but my HbA1c is 53... normal on this Hi Fat, extremely low carb lifestyle. I'm a lean 12 Stone. The clinicians at Papworth Hospital are very happy with my overall health and I'm about to enjoy my 64th birthday!! Sounds to me as if you'll get to a good old age too Sammie, with this new group of breakthrough genetic modifier medications. My very best wishes.

[@ThePollydoodles]

Hey glad the meds already started working (i have cf too) . did you get the drug on compassionate use? guessing your from uk also? x

[@sammieread4402]

ThePollydoodles Hi, yes on compassionate grounds it’s amazing. I’m from the UK how’s your cf? X

[@ThePollydoodles]

@@sammieread4402 aw im glad !!..its good that it's available for those who really need it :) My Cf is not too bad currently, last blow was 68, but was normally mid 70's-80, but struggled alot after having my baby (now nearly 2 )and my pfts droppped into 50's but got them back up to a more comfortable level at 68.. however i have quite tricky bugs so is hard to improve now as IVs to treat are too harsh on liver etc!! Can't wait fot trikafta to be out properly! How was your lung function before and how are you now? if you've been able to do blows with everything going on!? xx

[@sammieread4402]

ThePollydoodles started just below 40 now mid high 50’s within 4 weeks it really is amazing. Fingers crossed it’s available to everyone soon who needs it X stay safe X