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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beckyjohnson | @beckyjohnson | Jun 4, 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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@winemaker Oh that makes sense. Thanks

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Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Jun 4, 2018
In reply to @cehunt57 "@bamagirlgina how exciting! I am not familiar with Mayo-Jax but I have some familiarity with Mayo..." + (show)
@cehunt57

@bamagirlgina how exciting! I am not familiar with Mayo-Jax but I have some familiarity with Mayo Rochester. I was there for kidney pancreas pre transplant evaluation in 2016. It was an impressive, thorough and fantastic experience that lasted a week. In 2017 I returned for a review that lasted 3 days. Both times I stayed in a hotel and used shuttle service for transportation. I did tour the Gift of Life House in Rochester. I thought it was more for current transplant patients and didn't realize it applies to pretransplant patients as well. In Rochester most hotels have shuttle service to Mayo and Mayo patient discounts. My insurance has a lodging and mileage reimbursement. It is good you have looked into that with your insurance. One of the most helpful things I found was the Mayo Portal. It is a patient online system. I'm not very tech savvy but my husband helped me with this. It was useful to keep track of any changes in the itinerary, lab & test results and appointment provider summaries. Mayo Rochester also has a concierge service and information desks where there is information about everything and staff who are willing to help with anything. Mayo-Jax probably has similar features.

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@beckyjohnson I’m not sure what you mean by “opportunities”. Since this is in the transplant group the patients involved are both recipients & donors. Services available for one usually have something similar for the other. Mayo is really good about customizing care for the individual on a case by case basis. There is no “one size fits all”.

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bamagirlgina | @bamagirlgina | Jun 4, 2018
In reply to @bamagirlgina "@dorifg - One thing I will do next time we go is bring a rolling case..." + (show)
@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.

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It worked out great. Because of being there all day, and some downtime between appointments, we brought jackets (it's cold in there), snacks, medications, crossword puzzle books, etc. and then also gives you somewhere to carry all those materials they are going to give you. Also, if you have appointments spread out with downtime in between, check with the schedulers at the particular clinic to see if they have cancellations, etc. We were able to get a few things moved so we could end out day earlier. In fact, the transplant surgeon bumped out appointment up because he saw how long our drive was and wanted to help get us out earlier (which he told us when we got there....we were very grateful since we had a 5 1/2 hour drive home).

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bamagirlgina | @bamagirlgina | Jun 4, 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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We are not at two Mayo's. We are at Jax only. Not sure where the confusion came in but we are only at the one.

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beckyjohnson | @beckyjohnson | Jun 4, 2018
In reply to @cehunt57 "@bamagirlgina how exciting! I am not familiar with Mayo-Jax but I have some familiarity with Mayo..." + (show)
@cehunt57

@bamagirlgina how exciting! I am not familiar with Mayo-Jax but I have some familiarity with Mayo Rochester. I was there for kidney pancreas pre transplant evaluation in 2016. It was an impressive, thorough and fantastic experience that lasted a week. In 2017 I returned for a review that lasted 3 days. Both times I stayed in a hotel and used shuttle service for transportation. I did tour the Gift of Life House in Rochester. I thought it was more for current transplant patients and didn't realize it applies to pretransplant patients as well. In Rochester most hotels have shuttle service to Mayo and Mayo patient discounts. My insurance has a lodging and mileage reimbursement. It is good you have looked into that with your insurance. One of the most helpful things I found was the Mayo Portal. It is a patient online system. I'm not very tech savvy but my husband helped me with this. It was useful to keep track of any changes in the itinerary, lab & test results and appointment provider summaries. Mayo Rochester also has a concierge service and information desks where there is information about everything and staff who are willing to help with anything. Mayo-Jax probably has similar features.

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@cehunt57 I'm glad to know we both understand this is a transplant group as I fully intend to be a paired donor. Perhaps I used the wrong word to inquire if the services mentioned earlier (transplant lodging, shuttle, insurance reimbursement, concierge) are available for both recipient and donor. Though I expect insurance to depend on individual policies I am wondering if the donors & recipients are um afforded the same services or are they for recipients only?

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beckyjohnson | @beckyjohnson | Jun 4, 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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Probably from me getting confused with the multiple Mayos sharing information within their loop along with multiple people participating at the different locations. Thanks for clearing that up.

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beckyjohnson | @beckyjohnson | Jun 4, 2018
In reply to @bamagirlgina "@dorifg - One thing I will do next time we go is bring a rolling case..." + (show)
@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.

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@bamagirlgina Leave it to me to think need in literal terms but I can appreciate something to do during wait time like word puzzles. Thank you for sharing.

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beckyjohnson | @beckyjohnson | Jun 4, 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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@amlak Yes that was helpful. Thank you for sharing.

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2011panc | @2011panc | Jun 5, 2018
In reply to @jeanne5009 "Thanks for this great overview of what to expect. It relieves a lot of anxiety. My..." + (show)
@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..

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@beckyjohnson exchange housing would certainly open another avenue of assistance, however "qualified" might be difficult to determine. The one thing that I am most grateful for after the hospital was the ability to stay at GOL (Gift Of Life). The entire houses are set up for cleanliness, sanitization, privacy, personal interactions, peace, activities, calm, solitude, and companionship according to your desires. Exchange housing might have more difficulty providing those needs and/or options. For example, if I were staying in an "exchange" home I would become uncomfortable if I saw dishes left on the counter, crumbs or spills left on the counters, live plants in the home, cobwebs or dust in corners, cluttered areas in the house or soap scum in a shared bathroom. The need for extreme cleanliness following transplant is of utmost importance. Knowing that the placed I stayed practiced and demanded the utmost cleanliness and sterilization provided me with a great deal of comfort and peace. I am not sure I could find that level of peace and security in someone's home.

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beckyjohnson | @beckyjohnson | Jun 5, 2018
In reply to @jeanne5009 "Thanks for this great overview of what to expect. It relieves a lot of anxiety. My..." + (show)
@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..

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@2011panc Thank you for your reply. It certainly expanded my thoughts. I'm under the impression that transplant houses are for recipients & their caregivers. Are they a possible option for donors & their caregivers as well? It is surprising that live indoor houseplants are a no-no for you. It has been scientifically proven that houseplants serve as air filters for several indoor contaminates as well as contributing to clean oxygen. I'm definitly of fostering indoor container gardening. Your points are well recieved but I wonder if the level of sterilization needed is the same for both transplant participants? I'm experienced with "bad roomate" issues which are so distant in the past that I had forgotten them.

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