Viewing 3 reply threads
  • Author
    Posts
    • #17217
      Paul met Debbie
      Participant

      One day before my 58th birthday is a bit remarkable. Not only because of tomorrow. But next Monday, 1 week after, I will start my go at Kaftrio (/Trikafta).

      I have no expectations, but it still feels special after so many years of taking all sorts of medication that did nothing to really tackle the origin of cf, this time it possibly will do just that. These pills will try to change the defective cftr protein and allow it to form a working chloride ion channel. And this, in theory, could influence the entire dynamics of cf in the body.

      Of course there are some hopes. With a lung function of around 27%, some improvement would be welcome. A little more energy would be well spendable. Perhaps less antibiotics would make for a nice change.

      But the predominant hope is not about me. In the core, I wish for nothing. Without thoughts, stillness is always complete.  Sharing this stillness with Debbie is a miracle. One can not improve on nature’s miracles.

      But the body, which has performed so beautifully and flawlessly in the past almost 58 years, working so hard to compensate for and bypass the obstructions that its genome presented, I gladly grant some relief. Some well deserved enlightenment from its burdens. Specifically my lungs that have taken the lion’s share of the affliction, I would happily gift the opportunity to experience the feeling of some proper functioning, albeit in their old age. Some shower of life for a hitherto dried up well. I delight and rejoice in the surprise they might get this first day, not knowing for so long that this was possible and, actually, the natural state they are supposed to experience. They will finally dig it. I can feel them smile already through the salty tears they will produce for the first time in their life.

      Tomorrow I hope to get some nice birthday presents and cards. Debbie has already been acting mysteriously all week long. I will accept them with love. Starting the second of August, I will present my body with the new pills. May this gift in like manner be accepted in the spirit in which it is granted.

       

    • #17235
      Jenny Livingston
      Keymaster

      Paul, I hope you had a wonderful birthday! I am so happy you’ll soon be able to start Kaftrio – what a neat birthday present. Wishing you all the best, today and always.

      • #17246
        Paul met Debbie
        Participant

        Thanks Jenny, that is very sweet of you. I had a great birthday with even three surprise visits from family and friends that I had’t seen for more than a year. The Kaftrio has found a place in my medicine cabinet and I will start monday morning.

    • #17244
      Judy Moreland
      Participant

      Paul, Happy Birthday!  My best to you in starting Kaftrio.  I have been on Trikafta for over a year and a half, and it has helped me tremendously in many ways.  I’m still struggling to gain weight, but the lung function has improved.  My FEV 1 is still lower than I would like, but I went for 3.5 years without needing antibiotics, and when I did need them earlier this month, I was able to get by with 2 orals.  Let us know how you do.

      Jude

      • #17245
        Paul met Debbie
        Participant

        Thank you Judy, that is good to hear. I certainly will. Best wishes,

        Paul

    • #17271
      Tim Blowfield
      Participant

      I do hope that birthday was great and Debbie gave you a great day. You do know that persons who have most birthdays live longest. I’m working on it have had 77 so far – plan on another next year.

      Do document effects of Trikafta on body systems other than the lungs. It is great to hear in the improvement in lung function and exercise tolerance. Has it improved adrenal function, heart function, bone health or even the brain? We need to document all it’s effects. Will it help PWCF who have already had lung transplants?

Viewing 3 reply threads
  • You must be logged in to reply to this topic.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account