Mayo Clinic Connect
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
Liked by Rosemary, Volunteer Mentor, jodeej, estrada53, danab
Hi Kevin. You will be covered in prayer for your transplant tests. If it goes anything like my heart transplant preview, there will be blood labs, xrays, CAT scan, a pulmonary function test and perhaps a oxygen/carbon dioxide exchange test. You will speak to many doctors and they will also have you see a psychiatrist to ensure that you are mentally prepared for any possible surgery. Mayo plans out these days meticulously and you will be well taken care of. You are in great hands.
Liked by Rosemary, Volunteer Mentor, JK, Volunteer Mentor
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thank you . how long were you at your review? they said we would be there 7 to 14 days for three review.
Liked by Rosemary, Volunteer Mentor, estrada53
Hi Kevin. I live in Tucson so I was traveling back and forth to Phoenix so they split up my days between a month and a half. By the time I finished my last test and went to my follow-up appointment, they were prepared to discuss listing me for a transplant. I had to have special blood labs taken because I lived in South America when I was younger. They had to send out those tests to Rochester and we waited for results for a little over ten days. You review may not be as long. There was an earlier consideration to do a heart/lung transplant because I had sarcoidosis in my right lung, but it was not necessary. Best wishes and prayers your way. Let us know how everything works out or if you have any other questions, feel free to ask. 🙂
Kevin, which Mayo are you going to be at? When my husband had his workup for his liver transplant we had 4 FULL days of appointments. They do their best to get your appointments as close together as possible. You will meet so many wonderful people and will be very careful for.
Many prayers and blessings to you.
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.
Liked by Colleen Young, Connect Director, JK, Volunteer Mentor, Ginger, Volunteer Mentor
Hi Kevin and @wendylsmith44, thinking of you as you get settled into Gabriel House at Mayo JAX. I'm so glad that you were able to get a spot there. I believe you were first on a waiting list. Did you start the evaluation process yet?
I'm tagging @djallan and @windwalker who have also been at Mayo JAX for lung evaluation should you have questions as you go. Like Paula said, you will be well taken care of and guided by your care team and have the guide book to answer questions that are commonly asked. DJallan also recommends checking out The Lung Transplant Support Group at the Florida campus.
@paulajcoffer, I see from your profile bio that you have BOOP (Bronchiolitis Obliterans Organizing Pneumonia). How are you doing? Did you attend support group sessions while going through evaluation?
Liked by Rosemary, Volunteer Mentor, Ginger, Volunteer Mentor
Yes I did attend the support group meetings. Today and each Tuesday they are held at 1pm, Mayo 2nd floor by the elevator. Some of the best folks you can ever meet are there to help you understand as they have 'been there, done that'
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director, Ginger, Volunteer Mentor
Well your at. The right place. The eval will basically check you out from head to toe to see what problems may caise an issue during the transplant. But my prayers are with you and and this site has a lot of great people to talk to. Im looking forward to hearing about your journey.
Hi Kevin and @wendylsmith44, I'm not sure you have time to go online during your evaluation process this past week. I just want to let you know that I've been thinking of you both. I hope you'll have a minute to check in and let us know how you are doing.
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
Liked by Colleen Young, Connect Director, Ginger, Volunteer Mentor
@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.
Liked by JK, Volunteer Mentor, Ginger, Volunteer Mentor
@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!
Liked by Colleen Young, Connect Director, JK, Volunteer Mentor
@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 24×7 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.
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director
God bless you 🙏. And what you wrote makes sense. I heard we have 4 hours
Liked by marvinjsturing
@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.
@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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