Transplant Evaluation - What to expect

@dorifg, Welcome to Mayo Connect. I can understand your apprehension of invasive tests. If it is any comfort, I do not believe that your alone with that feeling. You have a couple of real strong positives working in your favor - You are in good hands at Mayo Clinic, and medical procedures have changed tremendously since your first transplant. I am inviting the following members who have experience with kidney transplant. Maybe they have some ideas to share with you. @ca426, @chill28, @cmae, @lori120ann, @mikechevy51, (@mlmcg, (@newlifesociet.
I am sorry to hear about the gastroenteritis that makes eating a big challenge for you.
@bamagirlgina , @jodeej , Do you have any experience to share with @dorifg?

I know that you will do what you have to do. You have a great inner strength and that attitude will get you through the tough parts. Did you get your appointment schedule yet? That should be helpful to try to find an eating time. Make sure to inform the nurses and Drs of your excessive weakness with prolonged fasting.
I look forward to hearing from others right along with you. We are here to share and to support you, anytime.
Rosemary

@dorifg, We were at Mayo Jax recently. Some of the tests my husband was scheduled for he had had recently so the doctor cancelled them when we met with her. He had had a colonoscopy and EGD recently so they didn't repeat them. He, too, has no appetite and had lost a great deal of weight along with significant muscle wasting. He did well with the fasting for tests and, in fact, a couple of times the tech saw that he had another test the next day with the same prep so they went ahead and performed both tests. The staff is so great to work with and will accommodate as much as the possibly can. At Jax Mayo the cafeteria is also very well equipped for various diets so I feel that Phoenix will be too. They have the basic foods, but also have protein bars and drinks, low sodium choices, etc. The food was actually very good there and great variety. My husband, while ambulatory, was a bit slow moving and had a little HE a couple of days, but we never felt rushed by staff who all had great empathy. If you have any difficulties, they are very willing to help in any way they can. We were especially dreading the appointment with the psychiatrist since we are pretty private people and felt like we would be under and microscope, but we were made to feel very comfortable. We went into the evaluation blind to everything but were pleasantly surprised with how everything was handled. We did have some appointments that were spread out with a lot of downtime, but were able to rearrange some of them...but not all of them, but staff did their best to try to accommodate as much as they could. While it's not where we wanted to be, they made the experience has painless as possible were able to ease our minds. One other thing I was appreciative of was their candidness. There is no transparency, they will answer anything you ask them and explain anything you need to know. You will be fine!

Thank you @rosemarya for your welcome and support. I really appreciate it! I have received my schedule of appointments and am busy noting on it when I have to fast and times I can eat. I didn’t have to do all these tests in 1994 so while I’m familiar with the appts with all the doctors a lot of this is new territory for me. I was blessed to have 22 years of good health after my transplant and now it’s hard adjusting to this new life. I often just feel lost. So it’s nice to be around people who understand. 

@bamagirlgina thank you for the information! It’s nice to hear from someone who went through it. 

@dorifg Making notes on the schedule about things like that was invaluable to me. Especially when I knew I had a 45 min window to eat between fasting. I brought a protein bar & a water bottle with me each day.

@dorifg I had a pancreas transplant in 2005 due to uncontrolled type 1 diabetes. I had all the usual complications developing including gastroparesis. My main objective then was to slow down the progression of kidney and vision problems. So far so good. The complications have improved or at least stabilized. My CKD stayed mild-moderate until 2 years ago when my kidney function began to decrease. I met criteria to be listed for transplant. I had pretransplant evaluations and was accepted/approved for kidney transplant at 2 transplant centers. I chose Mayo in Rochester, MN. I was very impressed with the facilities, the staff, the organization and communication at Mayo. They were very thorough and accommodating. Make sure to ask what previous medical records are relevant to Mayo for your current work up and get those records to them asap. It will help in planning your itinerary. That will help you keep on top of your schedule. We also accessed my local records using My Chart on our smart phones and Mayo Portal through Mayo online services. Some tests I'd had done recently and did not have to repeat. Some tests and recommended vaccinations could be scheduled locally including the dreaded colonoscopy. The most invasive thing I had done was the very many tubes of blood collected and a stress echo that involved an I V. (Because I'm a "bad stick").
How is your gastroparesis being treated? I had the huge misfortune of being treated with Reglan aka metochlopramide which caused Tardive Dyskinesia, a neurological movement disorder. Once that was diagnosed I've been switched to off label use of erythromycin for it's side effects of stomach motility properties. The most helpful thing is dietary changes. Smaller more snack size meals more often has helped and low fiber foods has helped. I also learned that for me the two most troublesome things were cabbage and legumes. A good nutritionist can help sort this all out. Mine was type 1 diabetic herself and was well trained in the dietary requirements of various stages of CKD.
Hope your upcoming pretransplant evaluation goes well. My prayers are with you for all the best outcomes.

@dorifg bringing snacks is a great idea! I carry a backpack with a bottle of water, fruit, granola bars and etc. I also keep our schedule, a pen and paper for notes or questions. It there seems to be any place that has a period of feasting that you feel is too long, ask if the last appointment can be rescheduled. Sometimes it can be moved to a different day. They do seem to try to put them first thing in the morning if possible, thankfully.

Best wishes for all to go well!
JoDee

Twenty-two years! Good for you. I just celebrated my 10th year with my kidney. If I did not have to take my meds with food I do not think I would be eating, I am not hungry. If you do not have to eat with your meds try a snack whenever you drink water, if that does not work try eating something during a favorite program. The hardest part has to be finding foods you can eat. I had an ostomy 3 1/2 years ago. Finding foods I can have has not been easy. Each time you have your protein drink you may want to "force" yourself to have something else along with it. Start slow. Did you ever talk with a Registered Dietitian? When spoke with a Dietitian she suggested Boost Plus. I love Greek Yogurt along with the Boost Plus I have a happy tummy. If you like yogurt, do not get it with fruit, unless you need the extra sugar. Once I received my kidney I had to watch my sugar input.

When I had my last colonoscopy I drank my Boost Plus and ate yogurt, I was told that I had the cleanest colon that they had ever seen. So it sounds as if you do not have to worry about your colonoscopy. When I had my colonoscopy, before my transplant, I was so dehydrated they had trouble finding a vein, my suggestion is to drink lots of water before you have yours - even if you have to live in the bathroom.

Most test, I have had, the fasting time is 12 hours. If you can have the test first thing in the morning that is the time I found the best time to have my test, I then have a bottle of water and Boost Plus with me so I can "eat" once the test is/are over. Passing out from not eating is not something I want to do, the staff have other things they need to do.

Everything can be scary, until it is done and over, besides when you are away from the building you know just how easy it was - "a piece of cake". Good Luck.

mlmcg

@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.

Dear friends,
@ca426, @chill28, @cmael, @lori120ann, @mikechevy51, @mlmcg, @newlifesociety,
@bamagirlgina , @jodeej

I want to introduce you to a new member that I recently met on the Kidney and Bladder Group.
@ginal, has recently begun Hemodialysis and has questions about possible transpant listing.
@ginal, I invite you to join us. What is it that you would like to know?

Rosemary