christina-kolassa
Forum Replies Created
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I have 2 kids with CF, Will and Sarah. Will was the first in our family to test positive back in Oct of 2020. He was completely a-symptomatic. We only had him tested because he traveled in a car with a friend that tested positive. Will remained positive for over 3 weeks with no symptoms. His sister, Sarah, has yet to test positive. We have our fingers crossed that she’ll remain healthy. I kinda feel like God (or the universe, whichever your prefer) thought the folks with CF have enough to deal with so they don’t get very sick if they contract the sickness. Just my opinion.
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What do the docs attribute the decreased need for enzymes? I’m wondering if they’ve figured that out yet. Trikafta is bringing new and exciting news in the CF community on a daily basis. Go Vertex!
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Has anyone had a blood draw showing a high CK Level? My son, Will, who has been on Trikafta since Oct 2018 recently was hospitalized for very high CK level in his blood. Just prior to the blood draw he lifted weights with a friend. The docs were concerned that the drug may have caused the elevated levels. While in the hospital they monitored his heart and gave him IV fluids. He only stayed 2 nights because his levels began to decline. I believe he had the elevated levels because of a condition called Rhabdomyolysis. “Nontraumatic causes of rhabdomyolysis include extreme muscle strain, especially in someone who is an untrained athlete; this can happen in elite athletes, too, and it can be more dangerous if there is more muscle mass to break down.” It’s my un-medically trained motherly instinct that believes this is what happened. I would love to know if anyone else, that has high CK levels, exercised more vigorously before a blood draw. I know lots of people are feeling a ton better after being on Trikafta and I wonder if because you feel better you’re able to exercise more and that’s causing the CK levels to become elevated. (Within 10 days after the initial blood draw Will’s CK levels were in the normal range, which is exactly what you’d expect if you suffered a bout of Rhabdomyolysis.)
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I have been told that my kids were going to die from the day they were born. I have 2 kids with CF. So for the last 18 years that’s something I’ve had to deal with. Now since the discovery of the drug Trikafta, the death card has been removed from the table. I am wholeheartedly going to continue along the path of happiness and no fear and send my kids to in-person school as soon as possible. I am tired of living in fear and Trikafta has removed fear for me!
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My CF kids will grow up thinking I was a nut because of all the things I was willing to try. We’ve tried Colloidal Silver, low level laser therapy, muscle testing, acupuncture, drum lessons and anything that I thought wouldn’t hurt them. My thought was “nothing we know of now has worked so why not try things outside the norm”. I did everything I could to keep my kids away from the harmful effects of antibiotics. On the other hand, or should I say the Western side, we participate in ALL clinical trials we qualify for. As a matter of fact my daughter, Sarah, just asked me if there were any trials she could be part of because she wants to use the money to buy a hanging chair for her room. Maybe not the Nobelist motivation, but she’s 12! Because of my crazy out of the box efforts, my son Will, was on of the 400 participants in the trial for Trikafta. I think crazy moms, like me, are driving this effort and I think we’re going to succeed!
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I totally get what you’re saying. This week my son, with CF, got “normal people sick”! His CF carrier brother got a virus and passed it to him. It’s such a different feeling knowing that now that he’s on Trikafta and his body is functioning more normally, that this sickness is going to pass without major pulmonary setbacks! I’m so tired of hearing that lung function can’t be recovered and we need antibiotics for every little illness. We have strong bodies that can fight these “normal people” illnesses. By the way, I’ve always considered my CF kids as normal people!
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My 12 year old daughter has scars from her 3 surgeries at birth to fix a blockage caused by Maconium Illius. Just recently she mentioned that she wished she had a flat stomach. I know she’s just entering puberty and it’s going to be a rough road, but it broke my heart to hear it. I’ve told her they’re war wounds and she should be proud of the battle she won, but that doesn’t take away the anxiety she feels. I pray that I can provide her the comfort she needs when she feels judges by others. We’re very positive and motivating as a family, but some things are out of our control.
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Participating in Clinical Trials at this time in history is life-changing! I believe participation in trials has an even greater impact on finding a cure than fundraising at this point. The drugs being introduced now WILL CHANGE YOUR LIFE! My son participated in the Trikafta trial and he’s a different person. His life has been renewed. It’s provided hope and a future for him and his sister who also has CF. Don’t be afraid! Please participate! We need you!
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The first time my son’s pediatrician heard about him being on the trial for Trikafta, he mentioned the unexpected issue of a change in reproductive health. I was a little surprised but it’s true, we need to re-evaluate how this amazing drug will impact all aspects of our lives! Thank you Vertex and Alex Abela, the scientist that created the molecule now called Tricafta.
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After reflecting on my initial response to the article, I feel the need to apologize. I understand the change will create lots of emotions. I’m just so happy with the results we’ve experienced, all I could do was focus on the good. I know how important mental health for the patient is and I’m just the mom. I don’t know what it feels like to actually have the disease. All I know is that a positive outlook has been a blessing for my kids. (I actually have 2 kids with CF!) I hope that moving forward CF patients can forge a new trail when it comes to employment and future planning. We need to let the world know we’re warriors that overcame a life-threatening challenge that seemed impossible before the development of this drug! Thank you Vertex, especially Alex Abela, Paul Negulescu, Fred Van Goor, Sabine Hadida and Mark Miller!
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Wow, wow, wow! I never thought I’d hear such a sad sentence… “I’ve recently come across multiple posts from people who are eligible for Trikafta, but are concerned that with the increase in lung function that is predicted with this drug, they’ll lose disability.” I will pray for the folks that have these thoughts. My son, Will has been on the drug for the last year. His life is new! It will bring you out of depression and darkness into the light of love and hope. Believe it!
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I have 2 kid with CF. I had the extreme privilege of meeting some of the top scientist at Vertex as well as top researchers in CF back in Oct 2018. They were amazing. I went to Harvard Medical School to witness the Warren Alpert award ceremony and symposium. The top 5 medical researchers for Cystic Fibrosis were being recognized as the world’s foremost scientists, physicians and researchers for their breakthroughs in bio-medicine. I met Francis Collins, Paul Negulescu, Bonnie Ramsey and Michael Welsh. (Lap-Chee Tsui was the 5th scientist, but he wasn’t able to make the ceremony.) They all thanked ME! I went there to thank them. We hugged and cried. They are real people with hearts and souls. It was a life changing experience for me. I definitely felt more committed to having the kids follow through with treatment and therapies after meeting the actual scientists that created them.