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I'm considering double lung transplant any advice?
Interested in more discussions like this? Go to the Transplants group.
@zazanana, I am happy to welcome you to Mayo Connect. I hope that I can provide some information that might be useful to you as you consider making this important decision. I am a liver/kidney recipient, however, I believe that all type of organ transplant patients can identify with the difficulties involved in making this decision.
Here are some ideas that helped me: I spoke to my family, a few close friends, my pastor, and to doctor(s). I searched for reliable information from major transplant centers. When I was referred to the transplant center, the transplant team was able to provide educational materials and to personalize it to my own specific situation.
I also made it my primary goal to focus on the positive aspects. It is a fact that transplant is a major operation that can involve many complications, however, it can improve your health and quality of life. Knowing what to expect of the lung transplant process, the surgery itself, potential risks and follow-up care are important to consider.
Here are stories that lung transplant recipients for you to read.
Here is the link to Mayo Clinic Lung Transplant Department.
zazanana, Are you currently listed for a transplant? or are you beginning to think about it? Could you tell me a little more about your current situation so that I can better assist you?
I look forward to hearing more from you.
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Hi @zazanana and welcome! I'm glad you found our site. In addition to the resources Rosemary shared, I'd like to provide a webinar that may be helpful: "Transplant 101: Preparing for Your Journey." https://connect.mayoclinic.org/webinar/transplant-101-preparing-for-your-journey/
Has your lung doctor suggeste referral to a transplant team? If your condition is getting worse I would definitely go to the next step. I had a left lung transplant, going into 3 months post op. Still have meds being changed but to breathe again is fantastic. I suggest getting the referral, they go over everything with you. Best of luck!
Hello Rose Mary thank you for responding, I just made up my mind to sign up for the transplant thru my doctor here in Las Vegas and transfer to a doctor in Arizona as long as my medical insurance is accepted, just gonna take the guidelines they give to get this accomplished
Thank you , Glad to hear you are at your best.
Hi @zazanana, I encourage you to join this discussion where other members considering a double lung transplant are getting their questions answered by other members who have completed evaluation and other who have had a double transplant, like @windwalker and @timfair
– Lung transplant https://connect.mayoclinic.org/discussion/lung-transplant-2b6d3f/
@kmg0501, I see that you have recently joined Mayo Connect, and I want to extend a welcome to you. It is a sincere pleasure for me, a transplant recipient, to meet you. Congratulations on your recent transplant surgery and on your recovery.
I have heard people tell of the miraculous feeling of breathing again after the transplant. What was it like for you the first time that you knew that you could breathe? Were you afraid at first?
Rosemary (liver/kidney 2009)
@zazanana, I wish you well. I think that you will be amazed at the knowledge that is available through the transplant experts. I would like to suggest that you begin to keep a list of questions to ask at your appointment.
I want to invite you to keep in touch. I encourage you to read what other lung transplant patients have to say. Questions and updates are always welcome.
@zazanana I like your words "I'm considering." After all, you must weigh your options and if you come to realize transplant is the right thing, then you must get onboard and live it. Our son (myson) was told last July of the severity of his condition and that the only help he could receive from Mayo would be a double lung transplant. He thought they were only going to change his medication. No lie. He went back late September for more testing and more confirmation. Then he had to decide. He opted to defer. It took me a while to understand his choice, only to know that it was "his choice" and how difficult this decision was for him. "I'm considering" is a personal thing after all. He was told he had to wait 6 months. So, this past April, after several re-tests, he was placed and agreed to be placed on the UNOS list. As a parent, we want new lungs immediately. As the patient, he wants to live with his own lungs, no matter how tough it is, as long as he can. One thing also that we as a family have come to grips with is … Even though it's his body and his decision, it is not all about him. There are 3 children 12 and under, a loving wife, and parents who adore him to consider. Tough, tough. I will pray for you in your decision making. Remember that new lungs are a gift….a gift of a longer, wonderful life ahead. God bless you.
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