Lung Transplant Post-op? would like to hear positive stories

Posted by abmac @abmac, Feb 26, 2020

My son is six years post kidney transplant this month! He is 21 now and was 12ish when diagnosed with HDR syndrome. Vanderbilt never confirmed this initial diagnosis but he still receives care for Hypoparathyroidism and is doing well post transplant (just dang those Steroids). I am his living donor. Ironically, my husband was diagnosed with lung disease almost 3 years ago and we are now starting lung transplant evaluation at Emory University in GA. We are ... managing a lot of emotions right now. Lungs are very different from Kidneys.

Interested in more discussions like this? Go to the Transplants Support Group.

@abmac, Good Morning. Welcome to Connect. As a liver/kidney recipient, I can understand the emotions and turmoil that you are going thru.

I want to call on some members who have talked about lung transplant. They will be the best ones to discuss specifics of lung issues.
@genocurt, @djallan, @wendylsmith44, @estrada53, @paulajcoffer, - Did you qualify for your lung transplant? Have you transplanted? Do you have a positive thought or story that you would like to share with abmac?

abmac, as you are well aware lung transplants are not as common as some other transplants. Sometimes there are members who post here-and-there in other transplant discussions. Here is one specific to lungs - What can I Expect for my Lung Transplant Review?
https://connect.mayoclinic.org/discussion/lung-transplant/?

@abmac, Is your husband in the hospital for evaluation or outpatient? The evaluation process, alone, is stressful. Has the lung transplant team given you any information about the lung post-op process?

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We are scheduled for the week long tests and evaluation and team meetings starting March 9th. Yes, we've been given a lot of information but have not met or known anyone with double lung transplantation. He will be outpatient.

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I also would like to see more comments about lung transplants. My husband is going to the Mayo Clinic in Jacksonville for an interview regarding a possible lung transplant. He has pulmonary fibrosis. He was diagnosed in 2013 and was told at that time he would not qualify for a transplant because of his age. He is now 75. However, I discovered through the website called InSpire, that the Mayo as well as other hospitals have expanded the age requirements. I contacted the lung transplant dept directly, and he is at least getting a preliminary interview next week. I know that there are a lot of other things that determines whether or not you qualify for a transplant. We actually live in Georgia too, but we have fallen in love with the Mayo Clinic in Jacksonville. That is an amazing place. Good luck to you and your husband. I am determined not to give up.

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@wreath, Welcome to Connect. I am happy for you and your husband that you will be having an interview at Mayo JAX. I wish you a safe and informative appointment. And i'm glad you found helpful information on InSpire.

@abmac, @wreath,
Here is a feature article about a lung transplant and a new technology at Mayo JAX -
https://sharing.mayoclinic.org/2020/01/31/breathing-easy-after-new-technology-offers-a-path-to-lung-transplant/

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@wreath

I also would like to see more comments about lung transplants. My husband is going to the Mayo Clinic in Jacksonville for an interview regarding a possible lung transplant. He has pulmonary fibrosis. He was diagnosed in 2013 and was told at that time he would not qualify for a transplant because of his age. He is now 75. However, I discovered through the website called InSpire, that the Mayo as well as other hospitals have expanded the age requirements. I contacted the lung transplant dept directly, and he is at least getting a preliminary interview next week. I know that there are a lot of other things that determines whether or not you qualify for a transplant. We actually live in Georgia too, but we have fallen in love with the Mayo Clinic in Jacksonville. That is an amazing place. Good luck to you and your husband. I am determined not to give up.

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Thank you and best of luck. We should meet up in GA sometime.

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@abmac

Thank you and best of luck. We should meet up in GA sometime.

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I think that a meeting each other in person would be so much fun! You will have to let me know if it ever happens.

I have been able to meet a couple of Connect members during my annual post transplant visit at Mayo in Rochester.
Once I was chatting with another transplant patient in the lab waiting room when I recognized her green transplant bag, and she recognized my face from my tiny Connect photo. And to top it off, we had been talking to each a few days before that chance meeting!
And most recently, another member and I had arranged (via private message) to meet between appointments for a cup of coffee. Both times, it was as if we already knew each other.

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Hi Rosemary 👋 I remember meeting you in the lab at Mayo for my 4 month checkup. How nice it was! I’m going back for my 2 year checkup in April. My daughter and I are both doing very well. I had to make an adjustment recently in my tacrolimus level, but other than that my, labs have been great.

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@rosemarya

@wreath, Welcome to Connect. I am happy for you and your husband that you will be having an interview at Mayo JAX. I wish you a safe and informative appointment. And i'm glad you found helpful information on InSpire.

@abmac, @wreath,
Here is a feature article about a lung transplant and a new technology at Mayo JAX -
https://sharing.mayoclinic.org/2020/01/31/breathing-easy-after-new-technology-offers-a-path-to-lung-transplant/

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Thank you @rosemarya - I’ve read that article to my husband last week. Very interesting.

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@abmac and @wreath, I'd also like to add my welcome. I'm inviting @windwalker into this discussion too. She did the lung transplant evaluation at Mayo in Jacksonville. As luck would have it, her health improved enough that she no longer requires a transplant. But she can share her experience with evaluation and the in-person support group.

In the meantime, you may appreciate watching this video with Dr. Cesar Keller, a transplant physician at Mayo Clinic in Florida talking with Richard Oppelt, the first patient to receive a lung transplant at Mayo Clinic’s Florida campus and his wife and caregiver, Janice Oppelt.
https://connect.mayoclinic.org/webinar/on-facebook-live-patient-surgeon-chat-15-years-post-lung-transplant/

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@rosemarya

@wreath, Welcome to Connect. I am happy for you and your husband that you will be having an interview at Mayo JAX. I wish you a safe and informative appointment. And i'm glad you found helpful information on InSpire.

@abmac, @wreath,
Here is a feature article about a lung transplant and a new technology at Mayo JAX -
https://sharing.mayoclinic.org/2020/01/31/breathing-easy-after-new-technology-offers-a-path-to-lung-transplant/

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Thank you for the article. Believe it or not I have been chatting with Chuck on the Inspire website. In fact, he is the one that encouraged me to contact the Mayo Lung Transplant center directly. I did, and they immediately set us up for the interview. I know God has led me to these two amazing websites that offer so much information and encouragement. Will keep you posted.

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