Transplant Evaluation - What to expect

@rosemarya thank you for the reminder about the liver transplant procurement presentation. I worry so much about this. I feel guilty knowing someone has passed to obtain a liver. There have been a few close matches but they have never been quite right for me. I wonder if others feel this way about receiving a liver transplant?

That's so interesting, thank you.
Now I'm curious as to why it is important that liver recipients & donors need to be close but for kidneys, they can be strangers. Off to search for answers.

That's so interesting, thank you.
Now I'm curious as to why it is important that liver recipients & donors need to be close but for kidneys, they can be strangers. Off to search for answers.

I have set my appt for May 21st. Hopefully when I get the itinerary I will have enough time to schedule air fare for my daughter to meet with the social workers and locate lodging for what I expect to be 10 days to 2 weeks hopefully. Im lookimg forward to this. I am currently under the vare of the Tampa General Transplant group and they are also very dedicated professionals.
Im signed up for the webinar on April 26. Is there anything else I should do to prepare?
Thank you for helping me learn the ropes..

I am scheduled for my evaluation for kidney transplant at the Phoenix Mayo Clinic in May for 4 days and yes I am excited but scared too. I am not a fan of invasive tests and the thought of tests like a colonoscopy are freaking me out a little 🙂 I had a kidney/pancreas transplant in 1994 and after 22 years the kidney failed. The pancreas is still working so I am still taking immunosuppressants. This year I have also developed some gastroparesis so it has been a challenge to find food I can eat especially when I have no appetite. Some days I only have protein drinks and I have little energy due to low calorie intake. So I am also worried about fasting for a lot of these tests too. But I will do what I have to do and hopefully will get good results from all the tests.

That's so interesting, thank you.
Now I'm curious as to why it is important that liver recipients & donors need to be close but for kidneys, they can be strangers. Off to search for answers.

I am scheduled for my evaluation for kidney transplant at the Phoenix Mayo Clinic in May for 4 days and yes I am excited but scared too. I am not a fan of invasive tests and the thought of tests like a colonoscopy are freaking me out a little 🙂 I had a kidney/pancreas transplant in 1994 and after 22 years the kidney failed. The pancreas is still working so I am still taking immunosuppressants. This year I have also developed some gastroparesis so it has been a challenge to find food I can eat especially when I have no appetite. Some days I only have protein drinks and I have little energy due to low calorie intake. So I am also worried about fasting for a lot of these tests too. But I will do what I have to do and hopefully will get good results from all the tests.

@dorifg - One thing I will do next time we go is bring a rolling case for everything. I carried a big bag that ended up being stuffed with all kinds of folders, paper, my husband's meds for the day, drinks, snacks, crossword puzzle books, etc. and it got really heavy. Next time we will bring a small rolling bag like a laptop case.

That's so interesting, thank you.
Now I'm curious as to why it is important that liver recipients & donors need to be close but for kidneys, they can be strangers. Off to search for answers.

@bambalina I received my pancreas transplant at Mayo Clinic, Rochester, MN, in 2011. I initially went to Mayo for assistance to better manage my Type I diabetes and was quickly referred to the transplant team. My evaluation was initially scheduled for 4 days, but grew as I completed tests and consultations. I will list the tests and consults that I remember, without finding my notes: Lab, EKG, x-rays, Cardiac Stress Test Using Medication, Tilt Table Test, transplant physician and PA, nephrologist, Kidney Function Test, 24 Hour Urine Test, Renal Clearance, and 24 Hour Ambulatory Blood Pressure Monitor.

At our initial visit to Rochester, when we were referred to the transplant team, we were also referred to the Transplant House and encouraged to contact them. We did so and are glad we did. For our first visit we stayed at the Kahler Inn, right across the street from Mayo Clinic, Charlton Building for over $100 a night. We initially stayed there because of it's location and unfamiliarity to the area. I now know that there are less expensive hotels further away from the Methodist Campus and near the edges of Rochester. We were glad we checked in with the Transplant House because there we learned that we needed to take a tour and be approved before we could stay there. On subsequent visits we have stayed almost exclusively at the Transplant House except for a few times the were full and we placed by them at a hotel for a lower rated that they negotiated. The Transplant House is located about 6 blocks from the Charlton Building, where we had most of our appointments. We used the transport bus contracted by the Transplant House once following my transplant surgery and otherwise drove and used our own car. I was extremely sore and found the bus rough, bumpy and crowded. Rochester is a small town and easily laid out, so we had no trouble finding places there. It might be possible that if you arrive a few days early for your initial appointments you may be able to tour the house and be approved to stay there. This would save you quite a bit of money. Even though the cost to stay has increased over time, it still is only about $40 per night.

Mayo Clinic, Rochester has contracted with the City and parking ramps around their campuses for free or reduced rates for patients, which we have taken advantage of as much as possible. Restaurants and other merchants are well aware that their primary clients are patients at Mayo Clinic and are willing to work with any special dietary or other needs you may have.

Of course this information is for Rochester, MN. I do not know the campus or services at Jacksonville, FL. You might contact them to find out if they have something like the Transplant House in Rochester or a list of commonly used hotels and check out the best choice for you. I encourage you to also consider that if your hotel is more than a few blocks from the campus, unless you drive to Jacksonville or rent a car there you may be able to use hotel transportation or city bussing. Also, if you are not comfortable driving in Jacksonville, you will also be dependent on other transportation resources.

I was quite daunted during my initial transplant evaluation visit and am glad my husband was along to support and help me get through everything. It was quite taxing for me, as I had never before been so thoroughly checked out by so many doctors and with so many tests in such a short time. Once done, though, I was glad I was able to get through it and very happy to have been so thoroughly reviewed. I was comforted by having an entire team of physicians that worked so well with each other to provide the best care options for me.

I expect you are not in the best health and will also find the initial visit tiring. Do not be afraid to borrow a wheelchair and save your energy for the tests and consultations. Everyone there understands and you become a part of the community. I got congratulations and high-fives when I became stable following my pancreas transplant and was placed on and then taken off the kidney transplant list. It is a big deal to be able to improve your health enough to not qualify for a transplant!

Good luck on your upcoming visit, trust the Clinic system and forgive yourself for any inadequacies you may have. We tend to worry ourselves sicker than we need to be. Blessings to you and your caregiver.