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What can I Expect for my Lung Transplant Review?

Posted by wendylsmith44 @wendylsmith44, Aug 12, 2019

my name is Kevin. im coming into Mayo tomorrow. Im sraying at Gabriel's House. Im coming in for a Lung Transplant review. Ive been told ill be one to two weeks.

i dont know what to expect.

I need prayers

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 19, 2019
In reply to @wendylsmith44 "We've passed all of our tests everything is going good we're still at the Gabriel house..." + (show)
@wendylsmith44

We've passed all of our tests everything is going good we're still at the Gabriel house we did have a couple questions when you are accepted to the lung transplant program and they call you when they have a long for you do they have helicopter you do they bring you by ambulance do you drive yourself do you have a pager how do they get ahold of you there's so many questions that we have

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@wendylsmith44, This is great news to hear that everything is going good! If my memory serves me correctly, your head must be spinning with questions right now. My advice is to keep a pad of paper handy and write down things as they pop into your head.
Do you have more appointments this week? You should be getting a pre transplant nurse coordinator who will help you thru every step, and twist/turn along the way.
When I was listed for my transplant, I lived with my iphone fully chargd and ready for the call. My husband did the same. Both of us provided our contact information. (I received my Call on my iphone at 6:42 one morning from my transplant surgeon). I was living at the Gift of Life House at that time, so we just hopped on the shuttle. You will need to arrange for your transportation and it depends on your own individual situation. I'm sure that others have had an experience with travel arrangements that they will share here.
Wendy and Kevin, We are here to support you and answer any questiont that you might have as you move forward.
With Hugs, Prayers, and Hope.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Aug 19, 2019
In reply to @paulajcoffer "Kevin I've just completed the evaluation process for a lung transplant. Over the next couple of..." + (show)
@paulajcoffer

Kevin I've just completed the evaluation process for a lung transplant. Over the next couple of weeks you will receive the most thorough physical you've ever had. Poked, prodded, questioned, blood tests and all that jazz. You will receive a Patient Visitors Guide that tells you exactly what is expected of you for each appointment. This means that you are not on this journey alone as the appointments are made for you, much like the military you are told where to go, what to do to prepare (if anything) and then be prepared for changes in the schedule as something might be added as you go along. My suggestion is to sit back, chill out and let this well oiled machine work for you. Just follow the directions in the Patient guide (the staff will print it out for you if you want. Mine was 45 pages but also included details on what the tests meant and nutrition information. I wish you success in getting through the process to be listed.

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@paulajcoffer, Hi and Welcome to Connect. And after reading your bio, I think that you might understand the thr reason for my delayed response. I have been away, in the mountains.
I want to commend you on your accurate description of the evaluation process at Mayo. Mayo is, like you said, a well oiled machine - and this level of care continues even after the transplant surgery.

Paula, Are you able to attend the support groups at the JAX Mayo on a regular basis? I think that would be a fantastic experience! I live at a distance from Mayo Rochester, and I have no support groups nearby. That would have been such a welcomed experience for me when I transplanted 10 yrs ago (liver/kidney) In fact, that is the reason that I was searching online and discovered Mayo Connect!

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marvinjsturing | @marvinjsturing | Aug 19, 2019
In reply to @wendylsmith44 "We've passed all of our tests everything is going good we're still at the Gabriel house..." + (show)
@wendylsmith44

We've passed all of our tests everything is going good we're still at the Gabriel house we did have a couple questions when you are accepted to the lung transplant program and they call you when they have a long for you do they have helicopter you do they bring you by ambulance do you drive yourself do you have a pager how do they get ahold of you there's so many questions that we have

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@wendylsmith44 I am not waiting for a lung, I am waiting for a kidney at Mayo in Rochester. I was put on the active list in June. My transplant coordinator told me that I will carry my cell phone 24x7 and I will answer every call even if I don't recognize the number (surgeons come to Rochester from all over the US and don't always have a Minnesota number). When I get the call, I will have 8 hours to get to Rochester. I have no idea if this time frame is also true for lung transplants.

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1 reply
wendylsmith44 | @wendylsmith44 | Aug 19, 2019
In reply to @marvinjsturing "@wendylsmith44 I am not waiting for a lung, I am waiting for a kidney at Mayo..." + (show)
@marvinjsturing

@wendylsmith44 I am not waiting for a lung, I am waiting for a kidney at Mayo in Rochester. I was put on the active list in June. My transplant coordinator told me that I will carry my cell phone 24x7 and I will answer every call even if I don't recognize the number (surgeons come to Rochester from all over the US and don't always have a Minnesota number). When I get the call, I will have 8 hours to get to Rochester. I have no idea if this time frame is also true for lung transplants.

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God bless you 🙏. And what you wrote makes sense. I heard we have 4 hours

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Sep 20, 2019

@wendylsmith44, @paulajcoffer, @djallan and @windwalker and all -
I came across this article today. I wanted to share it here in this discussion about lung transplants. I found it to be a very exciting concept. And it could extend the length of time for a lung to survive before transplant.
https://www.firstcoastnews.com/article/tech/science/in-mayo-lab-donated-lungs-will-be-kept-breathing-for-possible-transplants/77-e98dce91-45db-49c1-bb79-c1e7be028970
@wendylsmith44 and @paulajcoffer, How are you doing? What have you found out since your evaluations for your transplant about how or when to be at the transplant center when you get the call?

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