Transplant Evaluation - What to expect

Posted by bamagirlgina @bamagirlgina, Mar 12, 2018

We received a call today from Mayo-Jax saying our referral had been approved for transplant evaluation and to schedule an appointment. We were told to expect to say up to 3 weeks for testing every day, the entire day. We were not expecting that long of an evaluation and told them we would call back tomorrow after we looked into travel/lodging arrangements. We will plan to stay the entire 3 weeks but just wondering what the general time frame it was for most people. Did it usually take the entire three weeks? And can someone give me an idea of the battery of tests/evaluations that will be included. Thanks!

@bamagirlgina

@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.

Jump to this post

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

REPLY

@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.

REPLY
@dorifg

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.

Jump to this post

@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.

REPLY
@dorifg

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.

Jump to this post

@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.

REPLY
@bamagirlgina

@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.

Jump to this post

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

REPLY

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..

REPLY
@jeanne5009

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..

Jump to this post

@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

REPLY

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.

REPLY

@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

REPLY
@dorifg

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.

Jump to this post

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

REPLY
@amlak

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.

Jump to this post

Thank you for your infomation..best part that your son is doing well since his transplant in 2010. I wìll be sure to look up those folks while we are there.
I am familiar with Jax as I lived in Ponte Vedra for 10 years. Kernan would be a convenient spot should I need it.
Hope all continues to go well for all of you…..

REPLY
@dorifg

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.

Jump to this post

You are way ahead of me on all of this transplant stuff. I am hoping my sense of humor helps me out…
Just had an endo / colo. Worst part is the prep.
If its not fun Im not doing it!
If its really not fun…Im going to make it fun to get thru it !
That is what Im saying….
You will be fine…look how experienced you are…

REPLY
@dorifg

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.

Jump to this post

@mlmcg Nepro comes in chocolate, vanilla, strawberry, and butter pecan. I prefer the vanilla and butter pecan. I have lost some weight but not too much. My dietician suggested adding some things to the shakes my husband makes me. Like peanut butter, honey, protein powder. We make them with vegan ice cream and coconut milk. Yum 🙂

REPLY
@dorifg

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.

Jump to this post

Sounds good, especially the butter pecan. (I remember having butter pecan ice cream as a child when I visited my grandparents in the summer.) I found the vanilla Boost Plus too vanilla-ee and the strawberry just did not taste like strawberries to me. There was a time, well before dialysis, I had to drink shakes. I remember having ice cream, some orange juice concentrate, a banana, and some "egg-in-a-box" (that is what I call it – pasteurized eggs) I found it helpful as well as very good.

I lost more weight than I expected to when I had my ostomy surgery, I was almost skin and bones, but I did not want to gain my weight back too fast. I try to work my body every day, I do not do a work-out, just slow stretch moves all day long. I have gained some weight back but I gained more muscle and strength, which was what I wanted. May you maintain your strength and be healthy. Good luck.

mlmcg

REPLY
@dorifg

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.

Jump to this post

@mlmcg That’s something I need to start doing, exercise. I have an exercise bike I’d like to start using again if I can figure out a time to do it. I work full time and by the time I get home I only have about an hour and a half before I have to hookup to dialysis (I do 10 hours every night) so I’m finished in time to get up in the morning for work. That time before hookup is spent feeding the dogs and trying to eat some dinner. So during the week it seems like my life is just work and dialysis. 

REPLY
Please login or register to post a reply.