Transplant Evaluation - What to expect

@kequick and @bamagirlgina with our first appointment we had trouble getting the appointment with the dietitian. We ended up having it when we came back for Tim's 3 month check. They had it scheduled for 4 or 5 weeks after our first appointments because that was the earliest they had an opening. After I explained how far we had to travel and that we both worked, they changed it for us.

I live in the town where the transplant (lung) will take place. Can I just stay at home during the evaluation phase?

@ktb77799, I noticed that you are a new member on Mayo Connect, and I want to extend my sincere, "Welcome", to you.

Are you currently a patient somewhere? If so this is a great question to discuss with them. Even if you are not a patirnt yet, I think that this is an excellent question for them to sort. I was originally evaluated at a transplant center that was 45 min from my home, and the evaluation tests were clustered over several days over a 2 week period. It was easy for us to go back and forth during on those days.

I also want to call in one of out mentors, @windwalker . Terri, do you have any thoughts about the question that ktb77799 has posted about living at home during evaluation for lung transplant?

I wish for you to receive the best possible outcome. We are always here for you. I invite you to join in any of our transplant discussions at any time.
Rosemary

Thank you for welcoming me. I have been a patient at the VA in St. Louis for about the last four years.  Before that I was still working and seeing a private practice pulmunary specialist.  I've been using Symbicort and Spiriva
for about six years.  The pumunary doctor at the VA is the one who recommended a transplant. My records were sent to Barnes Hospital this past Friday so I'm waiting to hear from them to see how it will go.

@ktb77799, I feel pretty certain that this is a scary time and also an exciting time for you. It was for me.
(To avoid confusion, if you ever come across any of my story, I was evaluated twice: for my liver locally, and then for liver and kidney at Mayo).

After my local GI sent my records to my regional/local transplant department, I was scheduled for a consult that lasted most of the day. This included labs, social worker, finance, nutritionist, transplant nurse, doctor exam, Q&A with doctor. Then I had to be accepted by the transplant dept for evaluation before being listed. My pre transplant evaluation was on 2 separate days that were scheduled a week apart. This is just my experience, and I don't know what happens elsewhere. Every situation can be different, as each person is different, even with the same disease. I think you will have lots of opportunity to ask questions and to get answers before and during the process.
I am not experienced with lung transplant, but I will always welcome any questions and I will do mu best to help you find answers and resources,

I want to share these 2 discussions by lung transplant patients. I invite you to read them and although they have been inactive, I encourage you to join anywhere you want.
https://connect.mayoclinic.org/discussion/hello-what-are-the-bmi-restrictions-ay-the-mayo-clinic-for-a-lung-tran/
https://connect.mayoclinic.org/discussion/how-many-of-you-decided-to-move-permanently-to-be-near-mayo/
I look forward to hearing from you.
Rosemary

@bamagirlgina how exciting! I am not familiar with Mayo-Jax but I have some familiarity with Mayo Rochester. I was there for kidney pancreas pre transplant evaluation in 2016. It was an impressive, thorough and fantastic experience that lasted a week. In 2017 I returned for a review that lasted 3 days. Both times I stayed in a hotel and used shuttle service for transportation. I did tour the Gift of Life House in Rochester. I thought it was more for current transplant patients and didn't realize it applies to pretransplant patients as well. In Rochester most hotels have shuttle service to Mayo and Mayo patient discounts. My insurance has a lodging and mileage reimbursement. It is good you have looked into that with your insurance. One of the most helpful things I found was the Mayo Portal. It is a patient online system. I'm not very tech savvy but my husband helped me with this. It was useful to keep track of any changes in the itinerary, lab & test results and appointment provider summaries. Mayo Rochester also has a concierge service and information desks where there is information about everything and staff who are willing to help with anything. Mayo-Jax probably has similar features.

@ktb77799 Hi there! I went through a two week period of pre-qualifying tests for a lung transplant. You should be able to return to your home each day after your tests are done. I did not have to stay overnight at the hospital ever for that. Please keep us posted on how you are doing. Good luck with your tests.

I too will be scheduling at Mayo Jax for an evaluation in the near future. Trying to orchestrate getting my daughter there for part of it at least. Please let me know how you make out..Ill be following your path
Good Luck

@ktb77799, I want to send a virtual, "Thinking of You" card.
I hope that you have been seen by the doctors and are getting some answers. If you qualify to move on to evaluation, did you learn if you can live at home since you live nearby?
Prayers and Hope,
Rosemary

@cehunt57, @ktb77799, @windwalker, @bamagirlgina, @jeanne5009,
I want to share this information in case you might be interested, or maybe didn't see it. On Tue, Apr 24, there is a Video Q&A and Behind-the-Scenes: Liver Transplant. It will be showing the procurement process for a liver transplant. If you are not a liver patient, I inquired, and the process at Mayo Clinic's campus in Jacksonville, FL, is essentially the same for all organs.

If interested, you can scroll thru the list of Transplant discussions to find it, or here is the direct link where you can register and ask questions that will be answered during the presentation. https://connect.mayoclinic.org/webinar/video-qa-and-behind-the-scenes-liver-transplant/

Sending my thoughts and hoping that you are making forward progress.
Rosemary