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Helpful friendly advice PLEASE one cf patient to another.

Hello everyone. To try to make a long story short, I will try to be as non detailed as possible. This is sort of a question that is bothering me quite much. I have cf, and I have ddf508. I take trikafta. However, I am currently trying to get evaluated for lung transplant. I have only met with the team 3times. They keep telling me how HUGE this surgery is. Beleive me I know. And in one hand it scares me and guilts me, am I willing to go through a 12 plus hour surgery to have my born - with lungs removed and replaced with someone else's? Did they end that person's life because they know I am a candidate and possible match for their lungs? I don't want to kill someone to give me life. I don't want to kill someone ever. But in the in the other hand If I die my family will miss me so bad. And my mission on earth will not have been done yet. I can regain some strength after surgery to be able to hopefully be able to serve God And Jesus Christ here on earth longer then if I didn't have the surgery.

So as you see I have a very complexing decision situation. Now, what is stopping me from getting on the list? Well, one thing. The Covid shot. As I am not fully trusting the shot. That is the only thing that I have left to do, and it is the one thing preventing me. Do I take the shot and see what bad side effects it does to me, even though I weigh less then I'm sure the adult does calls for, and I already had Covid they said twice, and I am worried about blood clots because I already had blood problems with bleeding from hemoptysis in the past. And I have a family history of blood problems like blood pressure and annyrusms and strokes, and more. It's very complexing. And after getting the shot they want me to take the boosters as well before I'm accepted. Or do I just not take the shot and let cf take it's course and die of cf. I am also worried about inflammation because I have a bad immflamtion problem to. I'm worried the shot could cause more inflammation and cause me to have hemoptysis. It's just so confusing. I would truely like to hear your experiences and thoughts on this. I'm so sorry for this rant. And I'm so sorry if this is so confusing. To those who read this thank you. I tried to be as short about it as possible. ✝️❤️

  1. I'm glad you found us and felt comfortable sharing your situation with us. I know this is a deeply personal and tough decision. In regards to the Covid Vaccination, we have a few health leaders that have written about their experience. I will link those below, as well as an article from another person with CF about lung transplant. Wishing you peace and discernment as you make this important choice. Warmly, Corene (team member)


    From (CF warrior) https://cystic-fibrosis.com/living/covid19-vaccine-advocacy
    From (mom of a CF warrior) https://cystic-fibrosis.com/caregiver/covid-vaccine

    From Kadeem: Lung transplant recipient https://cystic-fibrosis.com/living/breaking-the-silence

    1. Thank you so much ❤️❤️❤️❤️

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