1. < Transplants

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!

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jeanne5009 | @jeanne5009 | Apr 12, 2018
In reply to @amlak "Hello, I just want tell you that my son had his transplant at Mayo in Jax..." + (show)
@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.

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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.....

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jeanne5009 | @jeanne5009 | Apr 12, 2018
In reply to @dorifg "I am scheduled for my evaluation for kidney transplant at the Phoenix Mayo Clinic in May..." + (show)
@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.

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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...

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dorifg | @dorifg | Apr 13, 2018
In reply to @dorifg "I am scheduled for my evaluation for kidney transplant at the Phoenix Mayo Clinic in May..." + (show)
@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.

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@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 🙂

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mlmcg | @mlmcg | Apr 13, 2018
In reply to @dorifg "I am scheduled for my evaluation for kidney transplant at the Phoenix Mayo Clinic in May..." + (show)
@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.

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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

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dorifg | @dorifg | Apr 13, 2018
In reply to @dorifg "I am scheduled for my evaluation for kidney transplant at the Phoenix Mayo Clinic in May..." + (show)
@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.

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@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. 

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ginal | @ginal | Apr 13, 2018
In reply to @rosemarya "Dear friends, @ca426, @chill28, @cmael, @lori120ann, @mikechevy51, @mlmcg, @newlifesociety, @bamagirlgina , @jodeej I want to introduce..." + (show)
@rosemarya

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

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Everything...lol The process to get your Evaluation once you have started Dialysis.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 13, 2018
In reply to @rosemarya "Dear friends, @ca426, @chill28, @cmael, @lori120ann, @mikechevy51, @mlmcg, @newlifesociety, @bamagirlgina , @jodeej I want to introduce..." + (show)
@rosemarya

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

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@ginal, This is a very good question, and I want to share a couple of resources that might gt you started. But first, I want to ask you' What has your current doctor said about this? That is the first place to start because he/she knows your health situation. (I am a volunteer with no medical training) I believe that that is where you can start as far as getting a referral to a transplant department for a consultation as a beginning step. I think that some other members might have more personal experience, and might be better 'qualified' to respond.

Here is link to Mayo's Departments and Centers for Nephrology and Hypertension
https://www.mayoclinic.org/departments-centers/nephrology-hypertension/overview
and
Here is the Kidney Transplant Program where there is some additional information. And also contact information where you can talk to someone directly about your situation.
https://www.mayoclinic.org/departments-centers/kidney-transplant/contact-us/occ-20209485
@ginal, I hope that this is a helpful beginning as you move forward.
Let me if it is what you are looking for.
Rosemary

,

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ginal | @ginal | Apr 13, 2018
In reply to @rosemarya "Dear friends, @ca426, @chill28, @cmael, @lori120ann, @mikechevy51, @mlmcg, @newlifesociety, @bamagirlgina , @jodeej I want to introduce..." + (show)
@rosemarya

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

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My doctor hasn't said much about it. Thank you Rosemary I check this out.

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ginal | @ginal | Apr 13, 2018
In reply to @2011panc "@bambalina I received my pancreas transplant at Mayo Clinic, Rochester, MN, in 2011. I initially went..." + (show)
@2011panc

@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.

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Lot of great information, Thank you

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mlmcg | @mlmcg | Apr 13, 2018
In reply to @dorifg "I am scheduled for my evaluation for kidney transplant at the Phoenix Mayo Clinic in May..." + (show)
@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

Do you have to be sitting down or in bed while you are on dialysis? I have a little peddle bike, not an exercise bike, and if you can sit in a chair while you are on dialysis you might be able to use a peddle bike to work your legs. Not knowing the type of work you do, if you are sitting at a desk all day you might be able to peddle away under your desk. If you have a job where you can walk, and if it is possible do not take the short cut to where you have to go, take the long way. If you have stairs, use them. I had a boss who's doctor said he had to walk for 30 minutes, 5 days a week. I know he would not do it by himself so I said that I would go with him. See if someone will walk 15-20 minutes at lunch with you, if you need someone to make sure you get out and about.

Do your dogs need to go for a walk? If you can only walk them on weekends they will be "happy campers" spending time out in the sunshine, if and when you have it, every weekend walking with you. If you can spend 5 minutes this Saturday and 10 minutes Sunday on your exercise bike, that is enough this week. Next week you can do the same or add another 5 minutes. Do not over do it until you are consuming more calories. Good luck.

mlmcg

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