Lung transplant: investigating the pros and cons of double transplant
I am at the beginnings of investigating the pros and cons of a double transplant. My pulmonary dr and I have been talking about it for the past two years and this years pulmonary function tests showed 29% putting me into state 4 of bronchiectisis. I am on 24 hr oxy/ 3 ltr…always short of breath just getting dressed is exhausting some days. I am 62 have had my disease since infancy and have been pretty healthy and active most of my life. God has blessed me with a full life. Is there anyone who is living with transplanted lungs? How are the inti rejection meds working for you? What was your process like? any input is appreciated
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Thank you, @timfair, for coming to Connect with this firsthand account of your journey. And what a journey you’ve been on! I am going to tag @dthoodjr who inquired about this 4 days ago. I hope that he will see it and gain some idea of what lies ahead.
I am happy for you and your loved ones that you are doing well. You speak volumes to all of us transplant patients when you say, “Stay strong, think positive and exercise as much as possible”.
Tim, I would like to welcome you to Connect, and I invite you to return to any of our discussions about transplant anytime you want. It is always my pleasure to meet and greet a fellow transplant recipient. May you continue to enjoy life as you move forward.
Thank you for sharing your transplant experience. Which location did you
have your surgery at? Terri M.
@dthoodjr, I hope that you are doing okay. It is April, so I am guessing that you are either at your appointment or getting ready for it. I send you my thoughts and hopes, for some satisfactory results for placement on the transplant list.
I know that the road to transplant can be confusing and frightening. Remember that you can come here anytime you want. You do not have to be alone. And your family and caregiver also are welcome to come here, too. Anytime.
@dthoodjr, I hope that you are getting the answers and diagnosis to aid in your treatment.
If you don’t mind me asking, did it take the full 2 weeks that you were prepared for? Other patients ask this same question, perhaps they can benefit from your experience.
Hi there. I just turned 63 on Dec 13. Was told yesterday that I need to get listed for a transplant. I am in the same boat you are in. I was almost listed in 2016, but was put on the wait and see list. I am also at 29%. Living with a transplant is no picnic either. It is hard work to stave off infections, cancer, and organ rejection. I want to fight to stay on this earth as long as possible for my daughter. Are you being seen at Mayo?
@windwalker, Hi, Terri. I was happy when I saw that you made a post on Connect this morning, but I did not expect to see the message that you shared. This is not the kind of belated birthday gift anyone would ask for.
When I read that you will need a transplant, my mind immediately reverted back to the time when I got that same message. Terri, while I have a different transplanted organ(s), I understand the waiting, the stress. the many tests and procedures, and the feelings of aloneness that can accompany the evaluation for being listed and all of the waiting. I wish that I knew more about lung transplant to share with you. One of the most positive things to keep in mind is that the entire transplant team is going to be fully focused on you and they are dedicated to your best health and success.
Were you taken by surprise at this news, or had you expected it? Will you be at Mayo JAX?