Transplant Evaluation - What to expect

Good idea! Those are so handy.
My husband always has a travel backpack that we fill with our necessities.. When I was in a wheelchair he draped it over the handles. That worked well at the time.
Rosemary

@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.

@cehunt57 Yes I was started on Reglan last month. It has helped me but I will ask my doctor about the erythromycin because I know Reglan can have bad side effects. I am doing a low fiber diet and have not had any nausea in a while but there are some days where I know if I force myself to eat I will be. On those days I resort to just protein drinks and smoothies. I was eating yogurt, cottage cheese and mashed potatoes but in my last lab report my potassium was a little high (it's usually low) so I have to eat those very sparingly now. I don't eat meat so it's hard because all the food I used to eat (beans, nuts, salads) are off the table now.

@mlmcg Yes I have a dietician at the dialysis center I see once a month. I just spoke to her the other day because my labs came back with my potassium a little high even though it's usually low. So I have to back off the greek yogurt a bit which I love. I drink Nepro which is a protein drink for dialysis patients.

That's a great idea. Thank you! I am going to get one.

Thanks for this great overview of what to expect. It relieves a lot of anxiety. My schedule has been pushed back until June 11th. That gives me a little more time to schedule everything. My daughter from NJ is meeting me in JaX and my other caregiver is going along too. Im more worried about how they will handle all of this..its a lot to absorb.
Will keep all of you in my prayers for being strong pioneers in this new journey..

@jeanne5009 it is over-whelming when you walk in the door for the first time. Everyone there is so helpful and kind, that it really helps to settle your nerves. It's scary, but oddly enough, it just becomes your new normal over time.
JoDee

Hello, I just want tell you that my son had his transplant at Mayo in Jax 2010 , Dec. This is the best place and support is great. There is a Second Chance Group that meets there every week and everyone is very helpful. Seek out Kristin Corlet and Steve Binder. They will be of big help in getting to know the area. We stayed at the Inn attached to Mayo. It is nice and you can try. Very convenient. We ended up renting an apartment on Kernan..I think.. and furnished it via Cort furniture after he was accepted for transplant. He received his transplant call within three weeks. We are blessed as this was a miracle.

@amlak
I would like to welcome you to Mayo Connect. I am happy that you have found us and joined us. Your information about your experience at Mayo Jax will be valuable to our members because we all learn so much from each other. Thank you for sharing your experience.
I invite you visit our other transplant discussion groups and to join in anywhere you want.
What kind of support was the most meaningful for you and your son after his transplant? Did you find any support once you returned home?
What organ did your son receive?
Rosemary

I am not familiar with Nepro, but I was able to eat foods while I was on dialysis. My potassium was always very low but it is more in the normal range now. Having to watch how much potassium I can have now would be hard because I am so use to eating foods high in potassium so I could stop taking the pills. When you said that you were drinking a protein drink I was hoping it was not one of those sports protein drinks. Have you lost a lot of weight or are you able to maintain your weight?

Does Nepro come in different flavors? I am not a chocolate person but I like Rich Chocolate Boost Plus, room temperature. Did your dietitian give you some suggestions on what to eat so you could get some needed calories along with drinking the Nepro? Hopefully, you will not have to back off on your Greek Yogurt for very long. After I had my ostomy surgery I devoured Greek Yogurt while I was in the hospital and the doctors were surprised how fast I healed because my diet was so limited. Once you have your surgery see if the Greek Yogurt works as well for you as it did for me. Good luck.

mlmcg