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

Posted by abmac @abmac, Feb 26 8:34pm

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.

@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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@abmac

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

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That would be great. We have our initial interview Mar. 3. Everything has happened very unexpected because he was told he wouldn't be eligible because of his age. Then I discovered through the website Inspire that the age had been expanded at several centers. I am a little puzzled as to why his Dr at the Mayo failed to inform us of these changes. He is on oxygen full time and now his level has gone beyond his portable concentrator if he is very active. So a new lung would be amazing. Please keep us in your prayers as I will do for your family.

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@wreath

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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@wreath, You have an amazing story. Thank you for sharing how Inspire and Mayo Connect have given you encouragement in your search for answers. Tomorrow is going to be a big day for you and your husband. I hope for the best possible outcome.
Hugs and prayers. Rosemary

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@rosemarya

@wreath, You have an amazing story. Thank you for sharing how Inspire and Mayo Connect have given you encouragement in your search for answers. Tomorrow is going to be a big day for you and your husband. I hope for the best possible outcome.
Hugs and prayers. Rosemary

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Rosemary, I am sad to say that because my husband has some heart issues, a diaphragm that does not work, and is almost 76 he is not going to be eligible for a lung transplant. All this makes him very high risk. He could be worse off or he could die on the operating table. I know that there are hospitals that do high risk surgery, but we are not willing to take that chance or take a lung from someone much younger. So we are going to enjoy the rest of the time we have together. Which will soon be 56 years. We have a granddaughter getting married in August and another one graduating from pharmacy school next year and he plans to see both this events. Thank you and all the others on this website for the information and encouragement. Will certainly keep you posted.

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@wreath

Rosemary, I am sad to say that because my husband has some heart issues, a diaphragm that does not work, and is almost 76 he is not going to be eligible for a lung transplant. All this makes him very high risk. He could be worse off or he could die on the operating table. I know that there are hospitals that do high risk surgery, but we are not willing to take that chance or take a lung from someone much younger. So we are going to enjoy the rest of the time we have together. Which will soon be 56 years. We have a granddaughter getting married in August and another one graduating from pharmacy school next year and he plans to see both this events. Thank you and all the others on this website for the information and encouragement. Will certainly keep you posted.

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You must be exhausted after experiencing a long journey, and now a long day of medical conversation and decisions. I am sad to hear that your hopes for a transplant will not be in the future. Knowing that you have shared 56 years together and that this is a decision that you have made together is what is going to strengthen you and him as you move ahead on a new journey.
The wedding will be lovely, and the graduation will be a grand celebration. I look forward to hearing the beautiful details.

Don't wait until then to respond here on Connect.

Do you and he have any immediate plans?

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Yes, we had already been making plans to sell our home and move to where our son lives. He is the director of a senior living home and has the knowledge and resources that we are going to need. The Dr. suggested that we go ahead and make contact with hospice. Even though we don't need their services yet, it's better if they are already familiar with what you are going to need in an emergency. Thank goodness both my husband and I are realistic and not in denial. I want to be settled where he can enjoy the children and our four granddaughters. And when the time comes, he will be surrounded by the ones he loves and I won't be alone. Please keep us in your prayers.

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