Lung Transplant is not for everyone. But be aware, most people with CF have doubts THEY need it. We acclimate, we adjust and just keep going along. That is that great fighting spirit we have.
The lung tx team will put you through evaluation. There are many tests. The results of the tests are scored and you then have a lung allocation score. People with higher numbers get lungs first. If you number is low, they will put you inactive, and reevaluate every 3 to 6 months to see where your score is.
As you know with CF we can take a sudden nose dive, so then again, they will see where you are on the lung allocation scale.
When lungs become available, your center will be in a region. They ideally want lungs from the region they are in. Lungs can be out of the body for 4-6 hours. So if your center is in California, you will not get lungs from New York.
I doubted I needed a lung tx back in 1995, I thought my doctor had to be talking to someone else - yeah I was sick all the time, gasping for air, a stick of a person, but I adjusted to it ( cut back on hours at work, did not travel, did not do biking, or running etc). Hemoptysis was the worst part of it. I had 30 months, once listed with the old lungs. I will be honest some days I thought " I don't want to do this, what might happen, it could be worse" or "I will not get lungs in time, I am going to die first". When I was listed I was at 27%, when I got my lungs I was at 17%.
If you doctor mentions transplant, be fair to yourself and at least look into it. Then think. If your doctor has not mentioned tx, ask them. If they avoid the topic, or say "you would not qualify", call a tx center and ask some questions. CF docs are not lung tx surgeons. They truly have no clue how one qualifies. Maybe they have fears or thoughts of their own they are mixing in. Don't allow that.
I am almost 10 years post transplant not. Still doing good. Have had acute and chronic rejection, and taking many meds, but life is great.
I wrote a book : Taking Flight: Inspirational Stories of Lung Transplantation. 265 stories from around the world of peoples experience with lung tx. I am guessing it has sold about 5,000 copies. But it is inspiring and you realize - fears are fears, and most are all in our head.... people are living and doing with their new lungs, it is worth it.
Happy to Help in anyway I can
Joanne Schum
The lung tx team will put you through evaluation. There are many tests. The results of the tests are scored and you then have a lung allocation score. People with higher numbers get lungs first. If you number is low, they will put you inactive, and reevaluate every 3 to 6 months to see where your score is.
As you know with CF we can take a sudden nose dive, so then again, they will see where you are on the lung allocation scale.
When lungs become available, your center will be in a region. They ideally want lungs from the region they are in. Lungs can be out of the body for 4-6 hours. So if your center is in California, you will not get lungs from New York.
I doubted I needed a lung tx back in 1995, I thought my doctor had to be talking to someone else - yeah I was sick all the time, gasping for air, a stick of a person, but I adjusted to it ( cut back on hours at work, did not travel, did not do biking, or running etc). Hemoptysis was the worst part of it. I had 30 months, once listed with the old lungs. I will be honest some days I thought " I don't want to do this, what might happen, it could be worse" or "I will not get lungs in time, I am going to die first". When I was listed I was at 27%, when I got my lungs I was at 17%.
If you doctor mentions transplant, be fair to yourself and at least look into it. Then think. If your doctor has not mentioned tx, ask them. If they avoid the topic, or say "you would not qualify", call a tx center and ask some questions. CF docs are not lung tx surgeons. They truly have no clue how one qualifies. Maybe they have fears or thoughts of their own they are mixing in. Don't allow that.
I am almost 10 years post transplant not. Still doing good. Have had acute and chronic rejection, and taking many meds, but life is great.
I wrote a book : Taking Flight: Inspirational Stories of Lung Transplantation. 265 stories from around the world of peoples experience with lung tx. I am guessing it has sold about 5,000 copies. But it is inspiring and you realize - fears are fears, and most are all in our head.... people are living and doing with their new lungs, it is worth it.
Happy to Help in anyway I can
Joanne Schum